22q family

22q conference in Disney

2012-01-27T09:41:00.000-08:00

The 22q conference is in Disney World this July and I sort of wish we could go, but Bria had such a hard when she was there 3 years ago. Last night at dinner we were taking turns answering random questions (favorite color, etc.) and Bria's response for favorite place to go on vacation was Disney. What?! When I asked her why she wanted to go to Disney and what she liked about it, her answer was the pool and getting a Schleich horse in Germany at Epcot. So, we could kind of just do that without going to Disney. I don't think we're willing to risk Disney again. Too bad. The conference sounds interesting, and it's always neat to see a bunch of kids with 22q.

updates

2012-01-13T09:34:00.000-08:00

It's been a while since I updated.

Christmas Break
It was good! Mike's entire family was in town, and we spent a lot of time at Mike's sister's house. They have a dog that Bria has been afraid of and I was worried about her not wanting to spend any time at their house during the break. I can't remember who came up with the idea, but Mike's sister brought the dog to OT for a number of weeks so Bria could get comfortable with the dog. The occupational therapist also came to Mike's sister's house one day and Bria walked the dog and gave her treats. So Bria now loves the dog, and she loved going over to their house during Christmas vacation. That helped so much!

Eyeglasses
We picked up Bria's new eyeglasses a few days after Christmas and she has been wearing them everyday all the time. She even wears them at school with her headphones, so they are a huge success. If she ever forgets to put them on in the morning, she notices right away that she can't see and she goes to get them. I promised her a fish if she consistently wore her new glasses, so we're in the process of picking out a tank and all the accessories.

Autism Assist Dog
We were contacted by Can Do Canines in December. I put our name on their waiting list about two years ago, and they had just reached our name on their waiting list. They sent me an application to fill out about Bria and how we hoped a therapy dog would help her. And they asked for references; I gave them references - neighbors, teacher and occupational therapist. Now all those references have been contacted and we're waiting to hear about the next step.

Babysitter
I've had a job posting on care.com for about 6 months and was just getting up the nerve to interview some of the better sounding applicants, when I was contacted by a young woman we know from our neighborhood church. She's back in town doing her student teaching before graduation in May, and she saw my post on care.com. So I hired her! She is coming a few evenings a week to help out with appointments and giving me a chance to go to yoga one night a week. She is amazing!

lots of appointments today

2011-12-15T18:51:00.000-08:00

Bria went to the 22q clinic at the U of M today. She only saw 4 of the doctors on the list: genetics, dentistry, immunology, and psychiatry. The psychiatrist was new to us, and I really liked him. He's going to have intake call us so we can have someone start working with her re: anxiety. She did not see ENT, plastic surgery, cardiology, audiology or speech. But it still took a very long time. We got there at 10:15, and didn't leave until 3:00 (we did have a lunch break at Punch Pizza.) We mostly just waited in our room for the different doctors to come in for their short visits.

We ran into a young girl who we used to see at the VCFS support group meetings. She's a year younger than Bria. It's been years since we saw her and her mom. Bria wasn't very social, but it was still nice to see them again.

I had thought she might need a blood draw today for immunology, but since she has been infection free, immunology didn't see any point in getting blood drawn just to count her t-cells, etc. So we avoided the blood draw for today. We did get orders to check her calcium levels and thyroid every year, to check her pneumococcal titers, and to get a spine/neck X-ray done. We'll just go to her primary doctor to get those labs done. That's easier than going back to the U.

She had major anxiety about the blood draw. She asked every doctor who came in the room if they were going to do the blood draw. Even though I assured her over and over that if she needed a blood draw, it would be at the lab, not in our room. They even made a special trip to the pharmacy to get EMLA numbing cream in case she needed the blood draw today. I'm not sure if it was wisest to put that off for another time, but the pediatric lab was across the river in another building and it had been a really long day already. Plus I still wanted to take her to look at eyeglasses.

So next we ran to The Glasses Menagerie to look at eyeglasses. I found this store by googling eyeglasses and special needs. When I emailed and told them our situation, they said that they've helped lots of kids with autism, and should be able to find a frame to work with her headphones. They had a huge aquarium that Bria loved. And we found a frame that she said was comfortable with her headphones. Vera Bradley frames :) They'll be ready in 5-7 days. She better wear them!

one of those days

2011-12-07T18:22:00.001-08:00

This morning while Tryg was in preschool, I ran around getting Christmas presents and groceries instead of going for my regular walk. That was probably a mistake. But it needed to be done, and it's so much easier to run errands by myself.

I had to pick up Signy after school to take her to the orthodontist, and that was actually the best news of the day. He doesn't think she'll need braces as long as her baby teeth start falling out pretty soon. She still has 9 baby teeth and 6 or 7 of them are pretty loose. She needs to be kind of aggressive with them and fiddle them a bit so they fall out. If it takes too long for them to fall out, her new teeth may grow in too crooked.

Home after the orthodontist to get Bria off the bus. She walked off the bus with a sneaky smile on her face, and then announced that she ate meat at lunch. The stinker! Sometimes she likes to eat hot lunch, mostly because she likes the dessert. So if there is a vegetarian option, I let her eat hot lunch. It doesn't usually happen more than once a week. Today there was no vegetarian option; it was chef's salad with meat or mandarin orange chicken. So I packed her a cold lunch. But apparently she decided she wanted the chef's salad, and they let her get it, and then they picked the meat off of it for her. (I would never ask her teachers to do that for her, that's why I only let her eat hot lunch when there's a vegetarian option.) They left the meat sitting off to the side, I guess. According to the note from her teacher she asked a bunch of questions about the meat, including "what would happen if I ate the meat?" And then she ate it. First off, I am mad that she spent money on hot lunch when I had packed her a cold lunch. I will be sending a note with her tomorrow telling her teachers not to let her do that again. Second, she.does.not.get.to.eat.meat. We are vegetarians. Her teachers know that. I hope that wasn't entertainment for them. I kind of just want to clear out her account so she can't eat hot lunch anymore, but I know she'll steal food from the other kids' trays. I know there are gluten-free and/or casein-free kids in her class, and I'm sure they don't let those kids eat cheese or bread if they are curious. Grrrrr.

And then tonight after dinner I decided to finally take Bria to Lenscrafters to look for new eyeglasses. She wasn't interested in trying on any glasses, and wouldn't wear any of them for a long enough time with her headphones and see how they felt. When I finally found a pair that seemed like they might work (wire frame with really thin bow), she refused to have her picture taken (that's how they measure how they fit on her face). We had to leave. But then she remembered there was loud music playing in the hallway of the mall, so she dropped to the floor and refused to leave. I gave her her headphones, and went out the first door, and she followed.

And this is what makes her such a challenge. The first time we went to Lenscrafters and got her first pair of glasses, there were no problems at all. She loved trying on the glasses. She let them take her picture. I don't remember it being an issue at all, though maybe that's because it was unexpected. Now that she knew what to expect, maybe she was more worried. But on the way there she didn't mention that she was worried or act anxious. So how do you know when something is going to go smoothly and when there are going to be problems?

Also, the occupational therapist gave Mike a handout at OT this morning about norepinephrine and how not having enough norepinephrine can cause inattention/distractibility, poor non-verbal communication/cannot relate emotionally and poor impulse control. She recommended the book The Chemistry of Calm which I have read. Oddly, I read it for myself, not Bria. But I guess I'll look into the recommendations and see what we can do.

Thanksgiving and getting ready for Christmas

2011-11-27T06:37:00.001-08:00

We had Thanksgiving at my older sister's house this year. They just moved into a new house last month (has a pool in the backyard!). When we visited on moving day, Bria discovered the crawl space in their basement and was fascinated with it. So she was really looking forward to Thanksgiving. She even brought her video camera so she could record the crawl space. Crazy fascination. (Today when I came home from the grocery store, Bria met me at the door on her hands and knees. When I asked her why she was crawling, she said because it reminded her of being in a crawl space.)

My sister has a dog which both Bria and Signy are afraid of, so poor Ernie had to stay in the laundry room the whole day. But we had a really good time. Bria keeps asking me when we're going back to Aunt Bonnie's house because she wants to see the crawl space again.

My kids at the vegetarian table with their cousin Lily.

Tryg loving the IKEA glogg

(HP keyboard plus mac mini = cannot figure out umlaut)

On Black Friday we put up the Christmas tree. We usually have white lights on our tree, but our lights were dead this year and Bria persuaded me to buy colored lights.

On Saturday, the kids begged to make gingerbread cookies.

school pictures

2011-11-27T06:34:00.001-08:00

I sent these pictures back for a refund obviously, so this is a photo I took (with my phone) of the actual school picture. Thought you might like a laugh. How could they think I would want this picture. With her is a boy from 2nd grade and Bria's teacher from last year. Good picture of them! And nice of them to try to help her. We won't try school pictures again. I've learned my lesson.

triennial evaluation for IEP

2011-11-22T18:31:00.001-08:00

Bria's team has been reviewing her records and evaluating her for the past month or so for her new IEP. Tonight we had the meeting at school to go over the evaluation. She still qualifies for special education under the ASD diagnosis. No surprise there. She scored pretty low on most intellectual measures, though her interest in reading and writing has really increased. I think that is partly due to Kumon. She has felt some success at home with that and her confidence in reading has grown.

They did a Functional Behavior Assessment (FBA) and found that the most common antecedents to challenging behavior (loud verbals, property destruction, aggression) are loud noises and removal of a preferred object or activity. This is exactly what we see at home. Most behavior difficulties occur during group activities which are louder and less predictable. We can't do much about stopping the loud noises at school. Somehow she has to learn to speak about how she's feeling instead of engaging in challenging behavior like screaming and hitting. Punishment doesn't deter a challenging behavior from occurring again, and offering tangibles as a reward for good behavior doesn't work in the long term. It's a challenge.

Another thing her teacher really wants to address is Bria's social thinking and social motivation. Social thinking is thinking about people when we interact with them. How we think about them affects how we behave. That affects how they respond to us, and then how we feel. Bria is very egocentric and doesn't really seem to think about the people she is interacting with. She doesn't think about how what she's doing affects other people. She is not motivated to behave a certain way for social rewards. She lacks the social motivation to do the right thing. She doesn't see how it's a bad move to hit her friend or call him stupid.

I was pretty impressed with how her teacher described this, and I'm having a hard time getting it right here. But it really struck a chord. She described exactly the challenges we have at home, and why getting her to change her behavior has been so hard.

church stuff

2011-11-13T19:54:00.001-08:00

Signy had a confirmation retreat this weekend and had a great time. She rode to Bay Lake Camp with our two pastors and two girls from church on Friday night and came home late Saturday night. She loved the food (they could accommodate both vegetarian and peanut allergy!), the camp, the company, everything. What a relief! I was afraid she'd get homesick.

Last week, I mentioned in an email to our pastor that we were considering sending Bria to Sunday school, maybe with an aide. He spoke to the teacher and then she spoke to me tonight at church. She used to be a kindergarten teacher (I think she's in seminary now) and she has lots of experience with kids on the spectrum, so she was happy to have Bria join the group. She had even printed out some coloring sheets for Bria because she'd heard how much Bria loves to color. So Bria went tonight with Signy (it's a group of kids from 5-12 years old). Signy said it went fine, so that's great! I'm sure there will be Sundays when it doesn't go so well, but I feel so lucky to have found such a great place that fits our family.

Tryg usually goes to the nursery but tonight he didn't want to. Near the end of the service I started rubbing his back while he was sitting on my lap, and he fell asleep. It was before 6pm. We transferred him to the car, and into bed when we got home, and he never woke up. Hopefully he's not awake for the day at 5am.

Bria's 9th Birthday!

2011-11-04T12:40:00.000-07:00

Yesterday was Bria's 9th birthday. She said it was the best birthday ever!

She opened a present before school. The Playmobil pool. And since she woke up at the crack of dawn (so excited!), we had time to put it together and fill it with water.

She brought mini cupcakes to school.

Unfortunately, since it was Thursday we had to go to Kumon for reading after school, but she was cooperative. And when we got home from Kumon, she opened another present. Barbie and her trotting horse, Tawny.

Then after Papa got home from work we went on a wild goose chase for an American Girl doll-sized horse that Bria had seen back in August at the Walmart in Bemidji when we were on vacation. That's what she wanted to buy with her birthday money from Grandmama and Grandfather. The Walmart closest to our house didn't have the color she wanted. So we were going to drive to the suburban Walmart, but then she decided she'd rather go to Hub Hobby and look for a Breyer horse. After searching the shelves for 10 minutes, she found the Breyer horse she wanted, and we went to dinner at Chipotle because she wanted to have a cheese quesadilla for her birthday dinner.

(and there's the horse eating dinner with us)

While we were eating I realized that the first time I ever had Chipotle was during Bria's heart surgery at the U of M nearly 9 years ago, when Aunt Melissa ran there to bring us something to eat.

Then it was home for cupcakes!

The cupcake with the B candle is actually not a cupcake. It's a paper liner filled with frosting! I only made 12 cupcakes and Happy Birthday has 13 letters. So knowing that Bria usually just eats the frosting on cupcakes, I decided to fill a liner with frosting. But even she could not eat more than 2 spoonfuls of frosting.

She's come a long way in nine years.

eye doctor

2011-11-02T06:30:00.000-07:00

Bria had a follow-up appointment at the eye doctor yesterday. All the peds clinics have moved across the river to buildings next to the new children's hospital, so the appointment was in the new space. Bria had a little anxiety about that, and she was so, so anxious that she would need to get eye drops again. I was pretty sure that she wouldn't need them since she had them eight months ago, but I couldn't guarantee her that, so I just said we'd have to wait and talk to the doctor. From the minute we checked in, she asked every person working in the clinic if she'd need to get eye drops.

During her exam, I was shocked by how many letters she couldn't see on the opposite wall. She could see using both eyes, but her right eye alone could hardly see any of them. You would think if her vision is that blurry, she would choose to wear her eyeglasses more! So she got a new prescription. But also, because of the big change in her eyes since last visit, she needed eye drops! Poor girl. She cried, and she scrunched up her eyes, but they got the drops in without me having to restrain her.

Her old prescription was
R plano +2.50 x100
L plano +2.25 x160

and the new prescription is
R plano +2.75 x010
L plano +2.75 x170

So I guess the big change was in the axis number on the right eye, but that means nothing to me. I found this German website where you can enter your prescription and it simulates your vision, but it didn't have a spot to enter the axis value.

The problem we have is that eyeglasses and noise-reducing headphones are not compatible. There is no excuse for her not wearing her glasses at home, because she doesn't wear headphones at home. But she comes off the bus wearing headphones (and no glasses) and I forget to have her put on her glasses right away. I have to remember this! But at school she wears the headphones a lot, and so the glasses don't get worn. The eye doctor said to ask LensCrafters if they have a creative solution. Maybe we can attach the glasses around her head with cloth strip and then the headphones won't be so uncomfortable. She won't wear ear plugs, so that option is out. Any ideas?

cardiology update

2011-10-20T06:00:00.000-07:00

Bria had her echocardiogram and cardiology follow-up appointment yesterday and everything looked great. She used to hate getting her blood pressure taken and would refuse to let them do it, but the last time she was there (two years ago), there was a magical social worker who somehow convinced her to do it, and now she loves it. She even let them take her blood pressure on her leg yesterday.

She has aortic stenosis that they've been following with regular echocardiograms, and it's been staying the same. Her mean gradient was 19 mmHg and anything under 20 is considered mild. The cardiologist said nothing would have to be done about the stenosis until it gets to around 45.

Every year it's the same man doing the echocardiogram who did it was she was 1 day old. She's pretty used to it by now, and brings her own DVD to watch while he does it. But she was funny yesterday asking him all these questions. I finally had to tell her to quiet down and let him work:) Then while he was moving the wand around on her chest, she sighed and said "This is so relaxing."

This was our first time in the new clinic next to the new children's hospital at the U. It was really nice. Lots of dolphin pictures everywhere which Bria loved.

good stuff

2011-10-14T06:56:00.000-07:00

We've had a string of good days at school. At least they haven't told me of any incidents of pushing or hitting. I hope it keeps up.

Last night we went to the book fair at Bria's school and she used her allowance to buy a few things, all non-books :) The girl loves stuffed animals and actually plays with them, so I let her buy a little calico kitty. She also wanted a dolphin poster for her room. Each year they hang the posters in the hallways and the kids can sign up to win each poster. Since she actually won a horse poster last year, I thought it was highly unlikely she'd win again this year, so I let her buy the dolphin poster. Now all her allowance is gone. But she was a super happy girl last night and this morning. She kept saying "I'm really lucky."

I've had a few responses to the babysitting job I posted, but nobody that I'm super excited about interviewing. We'll give it another week.

sculpture park

2011-10-11T11:09:00.000-07:00

On Sunday we went to the Franconia Sculpture Park. I had heard about it on facebook from Signy's former Montessori teacher. The kids really loved it, but like all new things it was a little hard for Bria at first. When we drove up, we noticed right away that at least 4 people were walking around with dogs. I hadn't anticipated that. It just hadn't occurred to me that people might bring their dogs. But not one of the dogs barked the entire time we were there, so after standing by the car for a few minutes, Bria felt safe enough to start walking around.

There were many sculptures that the kids could climb on and those were their favorite. After walking around the whole park, we climbed back on the playground sculpture and had lunch. Then we took off for swimming lessons. It was a great time!

This sculpture has swings underneath it, two slides, and two picnic tables.

cardiology follow-up

2011-10-05T13:32:00.000-07:00

Good grief, I have been on hold for at least 20 minutes trying to get a cardiology follow-up appointment scheduled. Bria's last echocardiogram was in November 2009 so she's due for another one. But it is proving to be extremely difficult for them to schedule. They told me at first that she could have the echo at 9am and see the cardiologist at 1pm. Um, what do we do for all those hours in between? So I said no, we need to get the echo closer to the cardiologist appointment. I guess because it's scheduling with two different departments, it's complicated. Okay, they just figured it out: echo at 12:30. They need to work on that process, that was kind of ridiculous.

Also healthcare related, we just found out that our health insurance plan will not be offered by Mike's employer next year. Apparently the administrative costs were too high. I won't have any more details until the end of the month when the open enrollment information comes out. So I'm going to worry all month about what this means for Bria's access to all the specialists she sees, like the pediatric cardiologist.

Mike works for a healthcare system (Park Nicollet) and I understand that it's more economical (and just good business) for their employees to use that healthcare system. But it doesn't make sense in every case. We live much closer to other healthcare systems. When Tryg was born, we paid $1000 for me to give birth 10 minutes from home instead of 45 minutes away at a Park Nicollet hospital. Also, they don't have all the specialists that Bria needs to see, like her pediatric cardiologist. If we were enrolled in the cheaper PN plan we'd have to see a doctor and then get a referral to her pediatric cardiologist, and I am not going to waste my time doing that every time. Or maybe after one time, we wouldn't have to do it again, but I can see it being a paperwork nightmare. So we chose the plan that included all the specialists she's seen since birth, and now I'm worried that she's going to lose that easy access.

another post about finding a caregiver

2011-10-01T20:32:00.000-07:00

We're thinking again of finding a part-time caregiver.

On Wednesdays Mike goes into work late so he can stay with Tryg in the morning while I take Bria to occupational therapy. This means he works really late. He's usually home after the kids are in bed. He's been telling me this would be a good night to hire a babysitter so I can go to yoga or whatever. This is a hard thing for me to do. It seems so frivolous. But at the same time I know that it's important to take care of myself and get a break once in a while. Yet, I can't hire our usual high school students to babysit on a school night, so the idea hasn't gone anywhere.

Then today we both commented to each other how easy it seems for our friends to go on family outings to the apple orchard or wherever, and how envious we feel about this. We do manage to do some things as a family, but they are usually pretty stressful events, and not entirely enjoyable. Today I went to a baby shower by myself, and at one point (during the gift opening?) someone started clapping and I immediately panicked thinking Bria was going to meltdown. She wasn't even with me! I'm just so tense about when the next meltdown is going to be. So anyway, we're thinking of trying to take the other kids on some family outings on the weekends and have Bria stay at home with the babysitter. This is really hard for me. If we find a babysitter that Bria likes, I don't think she's going to care. Most times when we are going somewhere new, we usually have to spend time convincing Bria that she'll enjoy it and making her feel comfortable and not too anxious. Most of the time, she'd much rather stay home. However, it is still hard for me to think of taking the other kids and leaving her at home. But I also have to think about the other kids and the family activities they are missing out on.

So I just sent emails to two potential babysitters/caregivers.

hopeless

2011-09-28T13:11:00.000-07:00

We had a rather rough morning. Bria has occupational therapy on Wednesday mornings before school. It's an early day so we have a ritual of stopping to get her a donut to eat in the car on the way to OT. But from the time I woke her up, she was complaining about going to school and wondering when she was going to be done. Once we arrived at OT, she didn't want to go into the waiting room, saying it was too loud, so we waited in the hallway for the therapist to get her. Then the therapist had to coax her to come along with her. At one point during her therapy, Bria ran out into the waiting room to find me. All of this is pretty unusual. She does have a substitute therapist right now while her regular therapist is on maternity leave. At the end of the session, the occupational therapist recommended we slowly work on decreasing the amount of time Bria wears her headphones, and this recommendation really upset Bria.

When we got to school she didn't want to take her things out of her backpack and bring them into her room. While I was trying to get her to comply, a student ran out of her classroom and then Bria's teacher came out after him.Then when I finally got her to bring her lunch, etc. into her CID room, she didn't want to go the the regular ed classroom where she spends the first part of her day. We finally got down there, with her complaining the whole time, but I couldn't find an aide in the room, so I wasn't sure what to do. Back in the CID room there was just one aide helping another student one on one, so I couldn't go back there. And I couldn't just leave her in the regular ed classroom. As if she would simply go in there, anyway. Then the aide popped out of the room and encouraged Bria to come in the room by mentioning a project they were going to do together. I left in tears. Some days just feel sort of hopeless.

And as I was writing this post, Bria's teacher called! She said she wasn't going to have time to write a note in the notebook this afternoon, so she was calling me instead to say that Bria had been getting extremely upset all afternoon about seemingly small things. She knocked down a shelf, pushed a kid, and kicked a kid.

I'm hoping this is just an adjustment period to everything new this school year, and it soon resolves. That's all I can hope for.

behavior

2011-09-27T15:11:00.000-07:00

Bria had a rough day at school yesterday. Her teacher wrote that Bria started out the day by saying she wanted to go home and being very worried about noises. Her morning at home was completely normal, so I don't know what was going on other than Monday morning blues. She calmed down by mid-morning, but then lost control in the afternoon. She was picking on others and even pushed a kindergartener down because she was mad about something. Sigh. The poor kindergartener just happened to be near Bria when she lost it.

If your kindergartener got pushed by someone at school, you'd be mad, right? You'd want to know what kind of terrible parents that kid has. It's so hard to be that parent. She just so easily loses control, becomes dysregulated. There is no easy solution.

church

2011-09-25T19:10:00.000-07:00

When we pulled into the parking lot at church tonight, Bria realized she had forgotten her noise-reducing headphones. Ugh. Mike wasn't with us because he had a soccer game, so I called to see if he was still home and ask if he could run us the headphones before he left for his soccer game. He didn't really have time to do it, but he did. While we waited for Mike to get to church, Signy went to the service and Tryg went to the nursery. Bria sat on the floor in the corner of the hallway, as far from the service as she could get, and covered her ears. It wasn't loud at all to me, at that point it was just the pastor talking, but I don't know how she hears things. I took a picture of her but it's too sad and pathetic to post. Mike arrived with the headphones after about 20 minutes and she went to the rest of the service with me. I think I better order an extra set of headphones to keep in the car.

Chris Koza from Rogue Valley has been doing his liturgy this month, and it's very nice. He's been singing "Geese in the Flyway" during offering. It's so pretty. I've been listening as I write this. Listen. It's #9.

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Whenever Bria wears her headphones, she speaks loudly (as do most people wearing headphones). Today during the sermon, she said loudly "Where's Chris Koza?" He was sitting a few rows in front of us. I pointed him out to her. Embarrassing. But nobody looked at us, so maybe it wasn't as loud as it seemed to me.

And then after church we went to Punch for pizza. It's pretty close to church and we've gotten in the habit of going there after church just about every other Sunday. Bria eats an entire margherita pizza by herself.

When we pulled into the church parking lot, I thought it was going to be a bad night, but it turned out pretty good.

glasses for S, picture card for B

2011-09-23T20:44:00.000-07:00

Since the start of the school year, Signy had been asking me daily to bring her to the eye doctor. She claimed that things were kind of blurry. I sort of didn't believe her, and just thought that she wanted glasses. But I made the appointment and brought her in. After she read the chart across the room, the optometrist said her vision was near 20/20. But after putting her through the other tests, he said her eyes were weak and he was going to write her a prescription. She is farsighted, and from what I read online, many people with farsightedness can make accommodations and do fine without glasses. But he said that when she is reading for a while, and then looks up, it is hard for her eyes to focus because they have been working so hard. So the glasses will help with that. He suggested that she wear them all the time, except for when she's playing sports.

So today at school she wore the glasses and they were great for reading and doing close work, but she couldn't read the smartboard in front of the room. Back to the optometrist tomorrow to see if the prescription is wrong or if the glasses were made with the wrong lenses.

(By the way, I'm extremely nearsighted. This farsightedness is further proof that my kids inherited most of their genetic material from their dad.)

One challenging thing that Bria does is get upset immediately when there is a problem, no matter how small the problem. She often will be so upset and loud that it is hard to even find out what the problem is or what you can do to help. The intermittent shrieking over small things can be very hard to live with. Bria's teacher noticed this behavior after only a few days of school. For example, Bria saw something different on her schedule, and rather than just complain or ask about it, she dropped to the floor and started screaming. Bria's teacher wanted to come up with a way to teach Bria how to ask for help and prevent these meltdowns. She made this picture card so when Bria faces a problem, she can stop, breathe and ask someone for help. Part of the fun is that she made it kind of sing-song when she explained it to Bria. So it was " Uh Oh da da da (each da getting lower) there's a problem!"

It seems so simple, it seems amazing that it would work. But Bria used it appropriately almost right away. In order to limit the unstructured time Bria spends with her friend N (who she's been bothering), her teacher had reversed the order that Bria had lunch time and outside time. Bria noticed that she was supposed to go outside first and then come in for lunch, but she was hungry and wanted to eat first. But she didn't flip out. She looked at the schedule, and said "Uh Oh da da da There's a problem!" and she explained that she was hungry, and they let her pick something out of her bag to eat before she went outside. Amazing!

never ending questions

2011-09-18T14:56:00.000-07:00

I am a quiet person. I like quiet. I don't understand talking just for the sake of talking. That is not me. However, that is my kids. They are hardly ever quiet. That's not to say that I don't love my kids, but man do I sometimes miss the quiet times. It is especially hard for me when they're all talking at the same time, and that happens a lot.

Also, Bria asks a lot of never ending, random questions. Questions that can be really hard to answer. Lately she's been asking a lot of question about oceans and lakes and how deep they are. Today she asked "Is the Arctic Ocean miles deep like other oceans?" Yes, is the easy answer. But she doesn't actually know what a mile is in terms of feet. I don't actually know where the deepest** ocean is. I don't know how deep the deepest ocean is. Is it in the Arctic? Or somewhere else? These are not facts I have memorized. I barely remember the new time for swimming lessons. How much detail do I need answer here? We've explained that all oceans and lakes have differing depths, that they're not the same depth everywhere. She's always comparing building heights and asking if the ocean is that deep. I say "well, in some parts it probably is that deep. It's not that deep everywhere." But she doesn't quite get that. She likes definitive, black and white answers.

So just tons and tons of questions about measurement of the ocean. Half the time I'm too tired to think about the best answer, and I want to give an answer that doesn't create another question (because, remember, I don't like to talk!). Isn't that terrible? I just get tired of the obsessive questions. I can't wait until she's a great reader, and she can read books on her current topic of interest.

**The average depth of the world's oceans is 12,430 feet with the deepest point being the Mariana Trench with a depth of 6.8 miles (in the Pacific Ocean).

dentist, IEP

2011-09-14T19:55:00.000-07:00

Bria had a check-up at the dentist today. Tryg was along for the fun, so the dentist didn't want me to go back with Bria, but he said she did a good job and her teeth look clean and healthy. Yay, Bria!

Her teacher says she's been doing better with her friend N at school. Not picking on him. But he still doesn't want to sit with her.

Bria came home with a cracked eyeglasses case in the beginning of the week. And then the next day she came home with broken eyeglasses. She'll just take them off and put them anywhere with no thought to whether they're safe. So she took them off in DAPE (adaptive Phy. Ed.) and someone stepped on them. They weren't completely shattered but LensCrafters said the hinge was beyond repair so she got a brand new pair. I knew that paying for their replacement program was a good idea.

We have an IEP meeting next week. It's time for her 3 year re-evaluation so we need to meet to discuss all the assessments that need to be done (speech, OT, social skills, academics, motor skills, etc.) and gather all outside assessments that we've had done. I think that would just be neuropsych. They will also be introducing an interim IEP because her current IEP will expire before the re-evaluation is done. The interim IEP will allow the team to complete the assessments and give them time to write the new IEP using the assessment results.

Then in November we will have another meeting to go over the new IEP.

I was reading a blog post at A Sugar & Spice Life about goals for the new school year. The author's daughter has autism and epilepsy and she was listing things that she thought would make her a better mom, like staying on top of her son's homework. And then she said "You'll notice making bento box lunches is NOT on the list. :)" ha ha! Yeah, not happening here either. Signy's getting the same old boring stuff she always gets. And Bria is so picky, I'm just trying to find some sorta healthy stuff that she'll eat along with the cookies. I have no idea whether she's actually eating the carrots I send. The lunch bag comes home empty, and she tells me she ate everything, but I'm not sure I believe her.

Back to school

2011-09-09T05:16:00.000-07:00

The kids all went back to school this week.

Bria hadn't seen her best friend from school all summer, so she was really looking forward to going back to school. However, already today, the third day of school, she came home sad and said she didn't want to go back to school. Her friend doesn't want to sit by her and doesn't want to be her friend. The note from the CID teacher said that she's been picking on him. But I'm afraid it might be worse than it sounds. Bria told me that she knocked over his chair today while he was sitting in it and he cried. Dang. Why is she doing this? She loves this kid. I truly don't think she realizes how she is jeopardizing her friendship with him.

One positive change for Bria is that she has graduated from the social skills dyad at Fraser and is moving into a social skills group class. She was doing such a good job in the dyad, they decided she's ready for the larger group. She wasn't doing any bad behaviors like hitting in the dyad, so let's hope she doesn't in the group, either. I wasn't worried, but after hearing what happened at school, I am getting worried. She starts that next week.

This week she passed out of another reading unit in Kumon. She's gone through 3 units since she started in July. I'm really proud of her. She never gives me any hassle when I tell her it's time to do her Kumon homework. I still think the work she's doing is probably kindergarten level, but she's making progress and I'm so proud of her. I'd like to also add Kumon math, but I want to see how she settles in at school. She never gets any homework from school, so she definitely has time to work on both reading and math at home.

updates

2011-06-02T19:44:00.000-07:00

I just haven't felt like writing much here lately. I've taken a couple videos of the kids, and was kind of waiting to write when I had enough time to also post the videos. But I haven't gotten them on the computer, and don't feel like it tonight. So updates on their own for now.

Bria had a 2nd grade showcase at school. Both 2nd grade classrooms sang some songs together related to the sea, and then we had treats. Their undersea artwork was displayed around the cafeteria. Of course, Bria had painted a dolphin. She was pretty funny with the singing. I'll have to make sure I get the video up, though Signy was the videographer so it's pretty shaky. Anyway, the first song they sang was Baby Beluga and Bria was swaying and doing all these swimming motions with her hands (nobody else was) and had a huge smile on her face. It was pretty fun to see.

Signy had a peace assembly at school on the same day. She and a friend got to stand on stage and "lead" some of the songs with a group of kids. She was pretty excited about that, so I recorded it. We saw our old neighbor who has taught at the school for 30? years. I told her she couldn't retire until she taught Tryg in 4th grade, but sadly for us, this is her last year teaching.

Tryg has learned how to ride a bike with pedals. He can totally do it on his own, but he'll just do it for a little bit, and then he'll get off and go back to the balance bike. So I have a video of Tryg pedaling his bike in the street.

It looks like we have a behavioral therapist! She came to the house on Tuesday to go over the available programs:
1) skill building program which is 1x a week (3 hours) for 6 weeks or
2) problem solving program which is 2x a week (3 hours each) for 6 months.

I think we're going to start with the 6 week program, though in my gut I think we'll end up with the 6 month program. It's pretty intense work. During the three hour sessions at the house, she'll be observing and coaching us, the parents. We will have detailed data sheets to fill out regarding Bria's behavior and our response and the result. One reason we'll start with the shorter program is the cost. Option 1 is $600 and Option 2 is $1600/month. But another reason we want to start with the shorter option is that the program seems so intense. I'd like to get used to having someone watching me in the house for 3 hours a week before I switch to 6 hours a week.

But they're slightly different programs. And I hope we're making the right choice. The therapist said she thought we could go either way. There are definitely some skills we could teach Bria, like waiting (so option 1 makes sense) but there are also some problems that wouldn't be addressed just by teaching a new skill (so then option 2 makes sense).

The goal with both is to learn how to solve the problems unique to the life of Bria and our family, and to learn to evaluate what works for Bria. So I'm excited, but a little scared.

behavioral aide and babysitter

2011-05-10T12:18:00.000-07:00

Oh, Gabby* where are you?

Bria finally got approved for MA-TEFRA, but we're still on the waiting list for the in-home behavioral therapist. Could be a while. I might look into services from Fraser.

I just sent babysitter/PCA job postings to the contacts I made at St. Thomas University and the U of M. I'm afraid I've missed the boat with that since probably all the students have left for the summer already.

I wish I didn't have to hire somebody.

*the perfect behavioral aid on the NBC show Parenthood

Happy Mother's Day!

2011-05-08T19:51:00.000-07:00

The kids each made me something for Mother's Day.

Tryg made this heart magnet in preschool. He claims to have written his name, but it looks a little too perfect :)

Bria completed this fill-in-the-blank at school. I love the third one, "You make me feel good when you talk about dolphins."

And Signy made me a coupon book full of goodies like "I will help with something without whining."

babysitter search

2011-05-02T10:13:00.000-07:00

I've spent the morning looking for a babysitter. I did this last summer too, and though I found someone last year, I don't think I used her to her full potential. I just have a hard time totally letting go. And I feel guilty paying for a babysitter just so I can go out and do nothing very important. This is why we've never gotten a PCA for Bria. But our therapist thinks it is important for our family happiness, so I'm going to try to find someone. I do think it would be a great learning experience for someone who is studying special education, and specifically autism spectrum disorders, to see how autism affects the child and family at home. And it would be a wonderful experience for us to have some support at home from someone who has interest and experience with autism.

What we're looking for is someone for weekly or bi-weekly date night, some daytime help during the summer when I've got to run the other kids to activities and it would be better for Bria to stay home, and possibly some other weeknight help so Mike can work late without worrying about me, and I can explore something for myself. It all feels kind of self-indulgent to me, but the truth is we are feeling stressed and exhausted, and do need some time away.

So I looked at over 30 pages of listings on sittercity.com filtered for those with experience with autism. I found a few interesting candidates: someone who is studying art therapy (could be awesome for Bria), an older woman who is a special education teacher, a few others who have worked extensively as PCAs for kids with autism. The next step is to pay the sittercity fee so I can contact these people for interviews.

I also sent emails to administrators at the University of MN, Hamline University, and St. Thomas University. All three schools offer Certificates in Autism Spectrum Disorders. I would like to find out if I could advertise our babysitting job to the students in these programs.

minnesota bill 1291

2011-04-27T12:21:00.000-07:00

I got an important action alert email from Pacer today telling me about a bill introduced by a Republican senator from St. Cloud that would repeal or eliminate most of the sections of Minnesota law that tell schools and districts how to serve students with disabilities. "This bill, if enacted, would cause delays in service for children with disabilities, increase misunderstanding and complaints about special education services, and strip 50 years of protections from Minnesota’s special education system." You can read the text of the S.F. No. 1291 here.

The following would be eliminated:
-Specific procedures and protections governing suspension and expulsion for students with disabilities, also known as the Minnesota Pupil Fair Dismissal Act (121A.43) and associated rules (Minn. R. 3525.2325)
-Specialized training for paraprofessionals who will work with students with disabilities (125A.08(c))
-Parents’ advice on special education programming through Advisory Councils (125A.24)

There are many Minnesota statutes and rules that he wants to repeal, including Minn. R. 3525.0755 for Extended School Year Services (summer school) which Bria gets, and Minn. R. 3525.0700 for Parental Involvement: Parents of pupils with disabilities have a right to be involved by the school district in the education decision-making process by participating or being afforded the opportunity to participate at each IEP meeting to develop, review, or revise the IEP.

This really boggles the mind. I think part of it is that he wants to eliminate anything in the Minnesota Rules and Statutes that goes above and beyond Federal IDEA guidelines. However, PACER says that much work has already been done in this effort. And that Pederson's bill will not reduce any paperwork burden on schools and districts, but will actually lead to more work. Complaints and due process filings will increase in MN if this bill is passed, because it will create uncertainty in the system. (all paraphrased/copied from PACER email)

family movie night

2011-04-22T19:11:00.000-07:00

We tried having family movie night tonight. I had ordered "Ramona and Beezus" from Netflix because I had heard it was a good movie for the whole family, and I enjoyed reading those books as a kid. We brought dinner down to the basement. Bria wasn't interested in watching the movie; she generally has a hard time with new things, including new movies. Her idea of a fun movie night is to watch Toy Story for the 50th time. That's not so much fun for the rest of the family. Well, Tryg might enjoy it, but not the rest of us. So we told her to come down and try the movie.

The biggest problem with a new movie is that she doesn't know what's going to happen next, so she talks a lot, asking questions about what's going to happen. Of course we don't know what's going to happen either, so we're no help to her. So at first it was just annoying that we were missing half the movie because she was talking too much. But then she freaked out and screamed hysterically in a couple scenes. Their old cat (who is barely in the movie until this particular scene) died. She totally flipped out. Mike took her upstairs. After she calmed down, they came back downstairs. When Ramona started falling through the attic floor, Bria freaked out and screamed hysterically again. She kept asking over and over if Ramona was going to die. Even when we told her no, she kept asking. Now you might think these are typical worries a kid might have watching this movie, but trust me, her reaction was not typical.

So now Mike was in the kitchen washing the dinner dishes and Bria was sitting on the kitchen stool crying and screaming about the movie. I decided to leave Tryg and Signy watching the movie, and just put Bria to bed.

Our family is stressed. We can't peacefully watch a movie together in our own house. I hate to feel sorry for myself all the time, but it's hard when every day is such a challenge. And this day had already been a challenge. It's hard to stay positive.

She's not severely autistic, and she's not just a bright but quirky kid. She's somewhere in between. Just typical-enough-seeming so that you're momentarily fooled that she can hold it together. Because sometimes she actually does. But lots of times she can't, and we don't know what to do, and it's really hard not to think it's somehow your fault. That if only we were more consistent, if only we found the right consequence... then, what, she wouldn't have any more sensory issues any more? she wouldn't have any more anxiety? I know her autism is not a result of my parenting, and I know there is no therapy to cure her. But I do think if I had some special parenting tricks we could handle this roller coaster a little better. At least we wouldn't feel so completely lost and hopeless.

Well, we should hear this week if the TEFRA application was approved, and we should find out when a behavioral therapist can start. Hopefully we can get the behavioral therapy scheduled in our crazy life, and get that started, and I can start learning some special parenting tricks.

school event

2011-04-15T14:45:00.000-07:00

Last night Bria's school had an open house with a Scholastic book fair, ice cream social, and displays of the kids' work. We've never attended one of these for Bria because she's never asked us to, and frankly, it's always seemed like too much work. But this one she wanted to go to. During the school day, the kids were taken to the library to look at the book fair and create wish lists. So there were books she wanted to buy. And then there was a plant project she had worked on that she wanted to show me. It was complicated because Signy had dance from 5-6, the open house was 6-8, and Mike and I had an appointment at 7:00. I planned to pick Signy up from dance at 6:00, drive to the open house, spend just enough time at the school, and then drop the kids off at my house where my parents would babysit them, and then make it to my 7:00 appointment. Of course, it didn't work out so well. Mike couldn't join us because he was working late. So I was solo with the three kids. The minute we walked in the school, Bria fell on the floor and refused to move because it was too loud. Tryg and Signy had already taken off. A teacher saw us, and unlocked the office door so Bria could sneak in there and exit out a different door, away from the commotion of the front door. She had a few more moments when she fell on the floor and refused to move. I don't know why I didn't think to bring her headphones. She did well in the library though, and everyone picked out a book to buy from the book fair. We never did find her plant project hanging on the wall, though we looked in every hallway. And we didn't make it to the ice cream room.

It's times like these that I think we need a support person/PCA. I was pretty stressed and impatient with Bria at the school. When she flips out, I just want to force her to get through it, rather than calmly work through it with her. If I had a support person, she could either stay with the other kids so I don't have to worry about them, or she could calmly work through the situation with Bria.

There are a couple universities close by that have autism certificate programs for education majors, and I'm thinking of posting a job listing with them. I think it would be good experience for the college student, and it would provide some much needed support for us.

This is a power point presentation about dolphins that Bria has been working on in school.

Edited to add:
Last night at the open house they had some Scholastic posters hanging on the wall that you could enter to win. As we were leaving, I quickly entered Bria's name for the horse poster and she won! Unbelievable. They gave it to her in school today. She got off the bus and told me she won, but then realized she didn't have it with her and started crying. I called the bus company and it was still on the bus (actually a minivan lately! that's another story) and they turned around and brought it to her. Much happier.

Fraser Walk for Autism

2011-04-02T19:40:00.000-07:00

We had a great time at the Fraser Walk for Autism this morning.

22q at the zoo

2011-03-30T11:54:00.000-07:00

Join 22q families everywhere for a fun-filled awareness day taking place
simultaneously at zoos all over the world on Sunday, May 22, 2011!

May 22, 10:00 AM - Como Zoo and Conservatory, 1225 Eastbrook Drive, St. Paul: http://www.comozooconservatory.org/plan/#/directions

Meet at the lawn at the main entrance; for those coming later, look for the 22q tee shirts! It's preferable to arrive up to up to an hour before 10:00 to get a parking spot - the zoo fills up fast. For those who've never been to Como, there are lovely picnic grounds, a lake, trails, the zoo, amusement park, butterfly gardens, conservatory and lighter fare for lunch. For those who don't want to purchase lunch there, they can bring a bag lunch or eat nearby - Snelling Avenue has many restaurants.

Tee shirts are $10.00 and can be purchased by April 15 at: http://www.22q.org/worldzoo.php#tees I would encourage all attending to purchase these as that's our only means of spreading awareness. "Twin Cities 22q" will be printed on the back of the shirts.

If you have questions or would like to indicate that you will be attending contact Shelene at skilcal@usfamily.net

therapeutic listening

2011-03-29T20:31:00.000-07:00

Bria started Therapeutic Listening back in November at the recommendation of her occupational therapist. It claims to help kids who are sensitive to noises. I had heard about it, and was desperate for something to help her, so we tried it out. For the first month, we could rent the headphones and CD player from OT, but then we had to purchase the special headphones and they were really expensive. But we did it (suckers).

A couple weeks ago when she was listening she dropped the CD player and the CD fell out and got a big scratch. It didn't seem to affect how it played, but when I brought it back to OT they made me pay to replace the CD and it was $50. Yeah, I was shocked. I had already started to question the effectiveness of the program, but that replacement cost really ticked me off. $50 for a CD? No CD is that special. Why does every autism therapy cost so much money? You start to wonder if you're just getting taken advantage of.

Also, when we visited the psychiatrist at the Autism Clinic he asked what typed of interventions we had tried, and when we mentioned the listening, he advised us of a website where you can research different therapies and see if they're based on real science. Of course, when I looked it up, I found no research done on Therapeutic Listening.

So tomorrow morning we go to OT and it's time to bring in this CD and switch for the next one. All week I've been thinking that I just want to quit. I haven't been that diligent about having Bria listen to this CD every day, twice a day, for 30 minutes. As you can imagine, some days it's hard to get that done. But I also worry that I don't give things enough time; that we lack consistency and follow-through. And I just don't feel like admitting to the OT that we want to quit.

Then tonight on facebook I saw a link to a blog post by a father who wrote about trying Therapeutic Listening with his 5 year old son with autism: Hi-Fi Pseudo-Sci, Occupational Therapy and Making Some Lemonade. Wow, I could have written the first part of his blog post. Especially this: "it seemed a bit plausible that people sensitive to noise could be desensitized by listening to something dissonant and random on a regular basis, and we are REALLY struggling with these noise sensitivity issues at home." But when it came time for him to purchase the headphones, he did some research and decided " it just sounded like a couple of companies want to sell overpriced CDs and headphones, by controlling the distribution of “approved” devices for their therapy...All of this made me wonder about the effectiveness of this “scientific” therapy in the first place, setting aside the over-priced hardware and non-sense about audio electronics. "

So tomorrow we will be quitting Therapeutic Listening. Thankfully it didn't do any harm, just cost money and time.

another weekend, another walk for a (great!) cause

2011-03-29T13:50:00.000-07:00

Our family is walking in the Fraser Walk for Autism this weekend at the Mall of America in support of Bria. My sister and two of her daughters are walking with us and we'll all be wearing shirts with Team Bria on the back and this on the front.

If you want to support us, please visit my fundraising page. We really appreciate any donation, no matter how small.

What services will this event support?
As the longest-running, largest provider of autism services in Minnesota, the funds raised will help Fraser to ensure the stability of current programs and to expand services. All Fraser programs will benefit from the proceeds of this event.

What autism services does Fraser provide?
Fraser serves individuals with autism in all programs. Our autism programs include:

early childhood education
occupational, physical, speech, music and feeding therapies
parent education, training and support
day treatment
respite care
diagnostic evaluations and referrals
PCA services
residential services
skills training
and more!

Signy's birthday

2011-03-23T15:43:00.000-07:00

Finally getting around to a post about Signy's 11th birthday. We took her and 10 friends to an indoor trampoline park. She had gone there for the first time in February for her cousins' birthday party and loved it. We got a babysitter to stay home with Bria and Tryg because I was pretty sure it would be too much for Bria. They had an hour of jumping time and then 40 minutes in the party room with pizza, pop, and cupcakes.

We made this an Echoage party. Instead of bringing gifts, her friends donated online at Echoage and half the money went to a charity that Signy chose (Love our Children USA, not Autism Speaks as I would have chosen), and the other half went to Signy to spend as she wished.

Here she is opening up presents on the morning of her actual birthday. Actually, this is the only present she had on her birthday morning - Glee Karaoke for the Wii. It was from her aunts and uncles. I had ordered some American Girl stuff for her but it didn't come until that afternoon.

I wanted to do something special with her on her birthday, and she wanted to spend her money, so I took her to the Mall of America. Mike was out of town, so my parents came to babysit Tryg and Bria. I brought Signy's birth certificate so she could get a free wristband to the amusement park. She dropped off her doll at the American Girl store to get her ears pierced, rode a few rides, then we had tea at the AG Bistro and did some shopping at the AG store. She saved half of her birthday money so we can buy a small video camera like a Flip, once we figure out which one we want.

After dinner at home with Papa Tom and JoJo, we went out for pie (March 14 is Pi Day!). And ran into Uncle Mark, Corey, Joseph, and Rowan. It was a full day!

just a picture

2011-03-19T20:26:00.000-07:00

I don't think I ever posted a picture of Bria with her new glasses, so here they are. She's been pretty good about wearing them, they just don't fit with her headphones. So if we're going someplace where she needs her headphones, she doesn't wear her glasses.

video star

2011-03-11T07:38:00.000-08:00

At school they've been reading the book When My Worries Get Too Big with Bria and working on ways to get her to calm down when she's anxious. Her teacher made a video of Bria talking about the book. I guess Bria's teacher told the author of the book, Kari Dunn Buron, about the video, and now the author wants to use the video for educational purposes. She gives presentations to educators about children on the autism spectrum.

Today is the first day of spring break, so the girls are home from school. Yet Bria woke me up at 6:15. She has already had two meltdowns this morning and it's only been 3 hours. The first was because she ran out of memory on her camera and couldn't take more pictures. The only way to solve the problem is to delete pictures, and I did that for a few minutes, but when I stopped (because I had other things to do), she threw a toy. Then she had a meltdown because I wouldn't let her eat pickles for breakfast in the living room. Then for some reason I don't even remember, Signy had a meltdown. I think she just didn't want to be left out of the fun of driving Mom crazy. And then to make the morning even better, when I called for Tryg to come and sit on the toilet before we left for preschool, I discovered that he had pooped in his underwear. So I had to dump him in the shower and spray him down, and then clean out his underwear and pants, and then finally bring him to preschool. He doesn't have preschool next week. The girls don't have school next week. Mike will be out of town at his Nanny's funeral. I will try not to scream the entire week. Maybe I should try some of those calming techniques.

straight talk

2011-03-07T10:20:00.000-08:00

I just bought a book (at the recommendation of the Behavioral Pediatrician at the Autism Clinic) titled "Straight Talk about Psychiatric Medications for Kids". We had the appointment this morning. Wah, I want to have a pity party. Instead I'm going to eat onion rings for lunch and then Tryg and I are going to Signy's orchestra concert at school.

scheduling mishap

2011-03-01T12:25:00.000-08:00

Today Bria was scheduled for a 3-4 hour appointment at the Autism Spectrum and Neurodevelopmental Disorders Clinic (ASND) at the U of MN. When we saw the neuropsychologist in December for Bria's annual appointment, she recommended we see the doctors at the ASND Clinic to get more help looking for behavioral therapy and to get a medication consultation. So the neuropsychologist made the appointment for us. Before the appointment, I received a large questionnaire in the mail from the ASND clinic along with information about the appointment. I did find some of it puzzling since it seemed that we were meeting for more neuropsychological testing, which didn't make sense since we'd been referred by the neuropsychologist after already having neuropsychological testing. But I figured it was a form letter they sent to all new patients, and they needed to collect this information from all new patients.

We got to the clinic and they had a waiting room with toys and 101 Dalmations playing on the VCR, so we left Bria with a clinic volunteer and Mike and I went to a room with the doctor. The first thing she said to us was that she had spent the previous evening reading Bria's electronic record (which included reports from her neuropsychologists), and she thought we'd been mis-scheduled. It appeared to her from the most recent neuropsychology report that we were there for a medication consult, and since she was a neuropsychologist (PhD) she couldn't prescribe medication. I felt stupid for not realizing we were scheduled to meet with a neuropsychologist, but I didn't even make the appointment! It didn't occur to me to check. And shouldn't the neuropsychologist who made the appointment have realized we needed to meet with a medical doctor? Arg. So we stayed there for an hour anyway talking with the neuropsychologist and the clinic coordinator about Bria's behavior problems and navigating how to pay for it, and we now have an appointment at the end of March with the medical doctor in the clinic.

It wasn't a complete waste of time because we did learn a few things about paying for Bria's healthcare, but yet it was a waste of time. Mike took off work, Tryg skipped swimming lessons, Bria missed school, and my mom and Melissa both took time to babysit Tryg.

The ASND neuropsychologist told us today that our referring doctor, the neuropsychologist from the Peds Specialty Clinics, is only going to be seeing oncology patients from now on. I probably wouldn't have found out about this until 9 months from now when I called to schedule Bria's annual neuropsychology appointment. That's what happened with the last neuropsychologist. I called to make an appointment and they told me he wasn't seeing us anymore. Nice, huh? Why didn't they tell us that at the appointment in December? So fine, we'll just see the neuropsychologist at the ASND clinic from now on, that probably makes more sense anyway.

But on to the exciting world of paying for behavioral therapy. I don't blame you if you stop reading now. I'm mainly writing it here for myself. There appear to be 2-3 organizations in the Twin Cities that provide in-home behavioral therapy. Health insurance does not pay for it. It costs around $1,600 a month. The average duration is 6 months. Medical Assistance will pay for behavioral therapy, but Bria can't get MA because our income is too high. She will most likely qualify for MA-TEFRA. The application has been sent and we're waiting to hear if she's accepted. Our parental fee for TEFRA is huge, but still less than paying for therapy out of pocket. We've heard that one of the organizations, Behavioral Dimensions, is really good, so we will probably go ahead and get her on the waiting list and figure out how to pay for it.

We found out a few helpful things today. One is that if we pay the $1300 monthly TEFRA fee, but don't use $1300 worth of services in a month, we can get that money refunded. I'm sure it's not an easy process, but it's good to know. I was concerned that we'd enroll her in MA-TEFRA, and have to keep paying the huge monthly fee even when she finished with behavioral therapy (because I'm being optimistic that we won't do it forever). Second, the ASND clinic coordinator was pretty sure that if Bria has MA, it will pay for everything, including her visits to the cardiologist, geneticist, etc. If true, that means we could enroll our family in a less expensive health plan through Mike's employer. So instead of paying $900 health insurance monthly premium for the family, we could pay $300. Third, and this could be the best news, there is a different way to pay for behavioral therapy. There is something called the Minnesota Comprehensive Health Association (MCHA) which is basically health insurance for a high risk pool. In order to get a MCHA policy for Bria, we would have to try to purchase an individual insurance policy for Bria somewhere else, get turned down because of her pre-existing health condition, and then be eligible for MCHA. The cost is much less than TEFRA. With a $500 deductible, the monthly premium is $334. The downside is that the whole application process takes at least six months. Bria cannot have both MCHA and MA. But there's no reason she would need both.

So do we use MA and pay $1000 more per month to start now (well, not really now, have to get on a waiting list) or wait six months to get the MCHA policy. I bet we can get on the therapy waiting list before she actually has the MCHA policy. I would think so.

church and school

2011-02-27T19:35:00.000-08:00

We tried church again today, rather unsuccessfully.

First I had to meet my sister halfway between our houses (about 25 minutes away) so I could return her daughters who had spent the night. Tryg came with me because Mike was with Bria at swimming lessons. He fell asleep on the way home and that was a good thing because he needed it, but when we had to wake him up an hour later to leave for church he wasn't happy. We got his coat and boots on and put him in the car, and he fell back asleep. I figured we'd just have to take turns holding him in church until he woke up. But as Mike got him out of the carseat, he realized that Tryg had peed his pants and of course, I didn't have an extra pair of pants. So I took Signy and Bria inside to church, and he went home to change Tryg.

We had talked to Bria about staying in the service this time and not going to the nursery. She brought some markers and a dry erase board so she could color during the service. But the minute the pastors started talking in their microphones, she started complaining they were too loud, and I could see she was about to run for it. So Bria and I sat in the hallway where I could still hear the service, and the volume was slightly quieter for her. She colored for a while, but then started complaining about being bored. And again, I could see that she was ramping up to do something physical like kick or run. So I resorted to letting her play with my iphone. (Signy went to Sunday school with the other kids soon after Bria and I moved to the hallway).

Obviously this isn't going to work. Either we pay to have a babysitter to watch Bria at home, or we pay for an aide to help her with Sunday school, or one of us stays home with her during church.

We've had school conferences for the girls in the past couple weeks. Bria is doing well. Her DAPE teacher (adaptive phy ed) also taught her at Parkview, and he can't believe the difference in her. She really was so stressed out at Parkview, it was completely the wrong place for her. Her teacher said she'd send some books home for "homework, so we could get a chance to hear Bria read. So far she has refused to read to us at home, but she is reading at school. They got a new student in her class last week, and she was super excited to meet him. Unfortunately, she also got a brand new bus and driver, and last Friday, the bus was so late I ended up leaving before it came because I had to get Tryg to preschool. They both ended up being late to school. The driver explained to me after school that the new student was having a hard time getting on the bus and saying goodbye to his father that morning. I totally know how that is.

With the new student, Bria's classroom is getting a little crowded, so they've started sending Bria and her friend N into the 3/4 classroom in the afternoons. She's been enjoying it. Especially the day they had birthday cupcakes!

Signy is doing fine in school. Her teachers seem to like her and say she is doing well. Just likes to talk. She really wanted to be on the Math Masters competition team, but she didn't make the cut so she was in tears when she came home Friday. Her 11th birthday is coming up in a couple weeks, and I have to get her party invitations in the mail!

dolphins

2011-02-21T08:41:00.000-08:00

Bria has become really interested in dolphins lately. I think it's actually from the Barbie Mermaid movie we borrowed from my sister. They also have a toy dolphin at school that she likes. Anyway, I mentioned to her that I thought there was a place where you can actually swim with dolphins, and she thought that sounded like the neatest thing. She mentioned it to Mike and he immediately told her she wouldn't be able to do it because it was really expensive, so I decided to look it up and see just how expensive it is.

Discovery Cove Orlando has a package that includes a 30 minute "dolphin interaction", snorkeling, floating on a winding river, and admission to Sea World. Now I want to go. It looks super fun. It is expensive, but not as bad as I was expecting. We'd have to take the kids out of school and go during the value season. Signy and I have been dying to go to the Wizarding World of Harry Potter at Universal Orlando, so we could do that, too. I'm insane to be considering a vacation that includes a large amusement park. The only thing that would save Bria would be lots of swimming at Discovery Cove and a really nice hotel pool.

However, as Mike unfortunately reminded me, we may soon be paying a lot for behavioral therapy. So a trip to Florida is not happening for at least another year. It's good he keeps my feet on the ground, but I was having fun with my head up in the clouds.

leg cramps

2011-02-18T05:19:00.000-08:00

Bria had really bad leg cramps last night in bed. She was crying and screaming for a while. While I was rubbing them, I could feel her leg tensing up.

From maxappeal.org:
Leg Pains
Many children suffer leg pains and cramps during the night or on resting from exercise. This can be due to tight ligaments in the legs or abnormalities of the foot or ankle joints.

Probably nothing we can do about it, we'll have to bring it up when we go to the geneticist next month.

eye doctor

2011-02-15T19:44:00.000-08:00

We had a long appointment at the eye doctor today. It took 2 1/2 hours, most of it in the waiting room! But Bria was awesome. She listened to the doctor, asked questions about what they were doing, and did everything they asked her to do. I was so impressed. I just sat there watching her, grateful. I remember how challenging some of these visits used to be. In fact, at one point the doctor looked on the computer for the note from the previous visit (with a different doctor) and scrawled across the bottom of the note was the word "difficult". Ahh, yes. I remember that visit.

So anyway, her vision is not quite as bad as it seemed at the pediatrician's office but she has a high astigmatism so they wrote a prescription for glasses. I'm kind of confused on the astigmatism thing. Apparently, astigmatism makes everything blurry, not just close things or far things. The doctor said that if you try to correct it with glasses at a young enough age, the brain can learn to see things clearly. At eight years old, it might be too much work for her brain, but we're trying the glasses anyway. You can't get rid of the astigmatism, it will always be there, so she'd have to continue wearing the glasses anyway. Like I said, I'm confused. Suffice it to say, the doctor thought Bria should try the glasses and come back in 6 months and see how she's doing.

We picked out some pink glasses with flowers on the side, and she'll get them fitted tomorrow. I hope she wears them and they don't bother her too much. I would think it would help with reading and headaches.

public speaking

2011-02-14T18:05:00.000-08:00

Our school district's autism resource specialist called me last Friday morning to ask if I'd consider talking to the early education parent support group this week. This is a group of parents who have young (pre-K) children with autism. This months topic is the transition to kindergarten, and she'd like me to share our story.

I'd really like to do this, because choosing where to send Bria to school was a drawn-out, difficult decision and I'd like to give any help I can. However, I hate speaking to groups. Even when I attend the monthly support group meeting for parents of elementary kids with autism, I get all flustered and embarrassed when it's my turn to talk. Back when I had a paying job, I spoke in front of FDA panels a number of times. So I know I can do it, it's just uncomfortable. But this audience won't be half as scary.

The other problem is that my memory is terrible. I do have the documentation of this blog, but that didn't start until the middle of kindergarten. I actually think for us, the transition to first grade was a bigger deal that the transition to kindergarten. I don't remember even questioning that she would be in a mainstream classroom in kindergarten. And I can't remember doing anything special before school started to prepare her.

I'll have to sit down, collect my thoughts and get something down on paper. I am going to be nervous.

OT

2011-02-14T11:12:00.000-08:00

I've noticed in the past few weeks that Tryg doesn't hold a pencil or crayon correctly. I don't think he even uses a fist. As a result, he kind of avoids coloring and writing. I'd like to keep my head in the sand and just think that he'll eventually learn, but he's 4 now. He should have this skill. I guess I'll have to talk to Bria's occupational therapist on Wednesday, and see what she thinks. He still has another year and a half of preschool...

physical

2011-02-14T09:40:00.000-08:00

I just took Bria for her physical exam. She was very worried about the doctor looking in her ears, but she did pretty awesome with everything. Unfortunately, her hearing was low in her right ear so now I have to bring her to the audiologist, again. She has a cold so I'm guessing it's just fluid. But even worse, her vision in both eyes was 20/70 so I also have to bring her to the eye doctor. Gah, in the next 4 weeks she has appointments at the autism clinic, the geneticist, the eye doctor and the audiologist.

I was a little worried after she got weighed (49.6 pounds) and measured (47 inches). I don't think she seems overweight at all, but I don't think Tryg does either, and when Tryg was in for his physical he was 40 pounds and 40 inches and his BMI was in the overweight range. So at that visit, the doctor talked to me about healthy eating, and it was almost offensive. I felt like I was being reprimanded. I really don't know what was up with Tryg's measurements. They might have measured his height wrong. Just another inch, and his BMI is healthy. He's not scrawny, but I don't think he looks overweight. Anyway, I was now worried that Bria was going to be considered overweight, too! So while she was doing the hearing test, I was calculating her BMI on my iphone. Well, her height is 4th percentile (short stature is common with 22q) and her weight is 15th percentile, and her BMI is in the healthy range. And the doctor confirmed this when she went over the results.

And as much as the doctor embarrassed me at Tryg's visit, she redeemed herself today by telling me that she had just been reading all about Bria the day before. She also received a copy Bria's neuropsychology report last week and had spent her Sunday afternoon reading through the whole thing. I was impressed.

1st Annual Walk for Awareness

2011-02-12T09:22:00.000-08:00

Our family participated in the 1st Annual Walk for Awareness today at our local mall. Bria was upset when we first got there because they were playing music, and the escalators were turned off. Who knew? I've never noticed music playing in the mall before, and I didn't think about the escalators not being on. But it wasn't too loud, and she adapted after a few minutes. She loves to play a game with Mike about the mannequins with their cut-off heads. So she pointed out all the cut-off heads as we walked a lap of the mall.

The event was not publicized by our local support group, so there were no other VCFS families walking with us. We also had no friends and family walking with us, and that was disappointing. I know everybody has their own busy lives, but this was a short 30 minutes, if even that. It would have meant a lot to us to have some support. We already feel alone in this most of the time.

neuropsych report

2011-02-11T11:52:00.000-08:00

I just finally got the neuropsych report from Bria's visit in December, and now am feeling very sad. She scored low on the IQ test, and is considered to have borderline intelligence. Some of that is a result of her anxiety and poor attention, but it's also consistent with 22q. They actually went on and on about her attention problems and have referred us to the Autism Clinic at the U of MN for a medication consultation to address attention and behavior problems. That's March 1. I have a huge packet to fill out and take to the appointment. It even includes questions about my pregnancy. Really? Time consuming and annoying, since I have already filled out similar questionnaires at least twice before at the U.

She has an appointment with her pediatrician on Monday for a physical. It's a requirement for her medical assistance application. I have a ton of paperwork (IEP, Team Assessment Summary, OT progress notes, seven page Children's Disability Worksheet) to gather and get mailed to the state medical review team by the end of February. And then if we get approved, we will pay more than $1200 a month for medical assistance. To offset that cost a little bit, we might be able to get her share of our Medica insurance premium paid by the state. I keep trying to be grateful that we are in this financial position, but I'm really just wishing that Medica would cover autism treatment and we didn't have to ask the state to pay for it.

I need to take all the paperwork to a coffee shop sometime and get it done. It's either that or stay up late completing it. I can't get it done with the kids around.

Reading the neuropsych reports always makes me cry. I spend too much of my time frustrated and sad by how challenging it can be to have a child with special needs. But I read the report and think how hard life is for her, and how unfair that is, and how too many people take things for granted.

4th Birthday

2011-02-06T18:56:00.000-08:00

Today was Tryg's 4th birthday. I honestly wasn't in the mood for throwing a party, and he only has a few friends to invite at this age anyway, so we didn't plan anything. But we needed to do something! So we decided to go to the Mall of America and take advantage of the unlimited rides you get on your birthday at Nickelodeon Universe. All three kids have been looking forward to it. We don't get to the MOA very much.

On the way, Mike, Signy and I wanted to listen to the new album I had downloaded, but the music made Bria scream and cry (The Decemberists - The King is Dead). It's hard to know what the right thing is to do when she acts this way. I don't believe she's doing it just to get her way. She likes to listen to classical music in the car, and she often asks for it right away when we get in the car. But I don't think it's that she loves classical music so much. It's more that she wants to control her environment and not have any new surprises. Classical music feels safe to her. When she was screaming and crying about our music, Mike and I disagreed on what we should do. I felt like it was already going to be challenging at the mall, why make the car ride a challenge. He didn't want to give in to her and let her have her way. We decided that we'd listen to nothing on the way, and on the way home we'd get to listen to our music. The rest of the car ride she was fairly calm.

As we walked in the mall, closer to the amusement park, she started getting agitated because of the noise even though she was wearing her headphones. Lots of kids scream at amusement parks. As we got off the last escalator, she laid down on the floor and screamed that she didn't want to go. I went off to pick up our tickets with Tryg and Signy, and Mike persuaded Bria to walk a little closer to the park with him, going through the American Girl store.

She made it into the park and went on the carousel a few times. She was still kind of agitated and commenting on all the noises, but she was doing better. After the kids all went on a bunch of rides, we went to lunch. That was challenging as well. The restaurant was playing "poppy" music in the bar area where we had to wait while they set up our table. Then there was different music at the table that she didn't like. Then she had a hard time sharing crayons. Then she didn't like the way her lemonade tasted. Then she wouldn't try her pizza because it was square. We made it through, she even ate her pizza, but I tell you, it was exhausting having to talk her through everything.

We went to the Lego store which all the kids loved, and then back for more rides, and by the time we left she was riding on a kiddie rollercoaster by herself.

And we listened to the entire album on the way home, and she didn't make one comment about it. Sometimes she can handle stuff, sometimes she can't. Makes planning and accommodating really hard.

Also on the way home, we had to stop and pick up Tryg's birthday cake. As we were leaving the mall I had noticed how tired Tryg looked, and as I feared, he fell asleep on the way to get the cake. When we got home he wanted to keep sleeping so I put him in his bed. Bria was very, very worried that we wouldn't be able to have cake. She kept telling me every 10 minutes to wake him up so we could have cake. Usually when he falls asleep this late in the day (5 pm) he stays asleep for the rest of the night, and when I told her that we might not get cake today, she started screaming and hitting me. Ugh. Finally, when I went to change him into pajamas, he did say he wanted to get up and have cake. So we had a happy end to a fun but challenging day.

Happy Birthday, Tryg! Yes, we have a squeaky wheel who gets a lot of grease, but we still managed to do something fun on your birthday.

senses

2011-01-31T08:15:00.000-08:00

Bria is finally well enough to go back to school, but today is a teacher workshop day so the girls don't have school! My exercise routine has really suffered. I was going to try to go for a walk this morning (Tryg's at preschool and I think Signy can handle watching just Bria), but it's snowing and while I was outside for 15 minutes shoveling, Bria was inside screaming for me. I told them both that I was going out to shovel, and Signy tried telling Bria that I was outside shoveling, but Bria kept yelling that she wanted me. So don't know if going for a walk is going to happen today.

And now, as if she didn't already have enough hypersensitivity with sound, Bria has now started complaining about smells. In particular, she doesn't like the smell of our house. Not much I can do about that. It's not even smelly. And it's getting kind of old to hear her complaining about it. Since she's been sick she's also been really picky about food. A lot of the foods that she liked before, she now is refusing to eat. I'm just going to have to be firm about not making her special food. If she's hungry enough, she'll eat, I think.

Bria's neuropsychologist recommended that we take Bria to the Autism Clinic at the U of M, and they scheduled an appointment in March. They sent me a huge packet to fill out before her appointment. And I got another packet from the MN Department of Human Services to fill out for TEFRA. She has to have a routine physical for that paperwork. Ick.

I don't think I mentioned that last week when I finally took Bria to the doctor, the NP wanted to look in her ears for infection, and she had to talk to Bria for about 10 minutes about using the light in her ear. Bria still wouldn't let her look. So we had to get another nurse to hold her upper body down on the table while I held her legs, and the NP looked in her ears. Just to look in her ears!!! And they were filled with wax, so she couldn't see anything anyway.

I have to try to get her ears cleaned out today. I have a theory that the wax is making her extra sensitive and irritable.

church

2011-01-30T11:25:00.000-08:00

Today during Sunday school, Bria bolted from her classroom. We were in the sanctuary attending the annual meeting and someone came to find us. I ended up sitting in the narthex with her (letting her color) while Mike attended the meeting. She had spent the previous hour, during worship, in the nursery with Tryg. It's nice that our church lets our 8 year old play in the nursery, but how long can we keep doing this? And can I send her back to Sunday school next week or is she going to throw a fit about it now? The reason she bolted today is that they asked her to stop coloring for a minute while they prayed. A reasonable request, she was in Sunday school after all. However, I am really questioning the wisdom of sending her to Sunday school. I think the whole concept of God is too abstract for her concrete mind. She can not read the lessons like the other kids in her classroom. Is she getting anything out of it? So what to do?

A church that had Sunday school during the worship service would really be better for us. Then we would only have to find a place for her for one hour, rather than two. I kind of hate putting her in the nursery for an hour during the worship service. And a church that has teachers trained in helping children with special needs would be better for us. I know of one church in the area that has a special needs children's ministry, but I don't know if their worship service is a good fit for me and Mike. Or maybe we should just hire a babysitter for her every week, and leave her at home while the rest of the family goes to church. Or we could just give up. I wonder what other people do.

fever

2011-01-26T06:45:00.000-08:00

Bria has had a fever since Sunday night. This the the third day she'll be home from school. I'm hoping she can go back to school tomorrow. I just took her temp and it was 99.7. She also has cold symptoms so I think it's just a virus. Having my routine disrupted is driving me a little crazy. Being stuck in the house is not fun.

fever and walk for awareness

2011-01-23T18:40:00.000-08:00

Bria has a fever tonight so I'll have to keep her home from school tomorrow. I was just thinking to myself yesterday that the kids have been very healthy this winter. I'm trying to figure out how I'm going to get Tryg to and from preschool tomorrow. Bria will probably still be in bed at 9:00 when I bring him, but I don't want to leave her home alone. Mike offered to go to work really late to help out with preschool drop-off but then he won't get home until after 7:00pm. And I'll still have to figure out how to pick Tryg up from preschool. At least she should be awake at noon, and it should be a little easier to get her dressed for the cold and into the car. I know tons of people have this same problem occasionally, we'll figure it out.

The Velo-Cardio-Facial Syndrome (VCFS) Educational Foundation is holding the 1st International Walk for Awareness the second weekend in February. They're asking people in different cities around the world to walk to raise money and increase awareness of VCFS. I thought it sounded like a great idea so I emailed our local support group leader about it, and now I'm in charge or organizing the Twin Cities walk. Rosedale opens up early for walkers, (and it's close to us!) so I think we're going to walk there on Saturday, Feb. 12. I thought about the Mall of America, but have a feeling there will be more red tape associated with walking there. I'm not expecting a huge group of walkers to participate, but I've emailed Rosedale anyway, just in case we need permission to walk as a group. I think we'll invite everyone to our house after the walk for bagels, coffee and juice.

If you are interested in donating money or participating in the walk, click on the link above. If you do make a donation, write my name for the name of the walker you are sponsoring. If you register to walk before January 31 you'll get a t-shirt! There is even a walk in Schaumburg for you Illinois people :)

what we did last weekend

2011-01-20T16:32:00.000-08:00

Last Friday and Saturday, Signy's dance school performed The Lion King. She was a leopard. So she had a performance on Friday night which I went to as a ticket volunteer. I just got to see part of it that night. On Saturday, she had two performances and she was there from 12:00 to 9:00. I went to the matinee with my parents and Mike went to the evening show with his parents. It was a really fun show. But she was exhausted!

On Sunday, Signy sang a solo in the re-scheduled Christmas pageant at church. She totally volunteered to do it. I don't know where she gets the courage.

And then she had a small line to read.

Then she went to downhill skiing lessons at Como. Mike went cross-country skiing during the lesson, and I didn't go, so no video of that.

Later that day, Bria had swimming lessons. She's been taking private lessons at Foss Swim School for about a year now, and has made so much progress. Her current instructor figured out how to make a swimming game about Subway (because he realized Bria was fascinated with both the trains and the restaurant). They always make it fun, and she loves to go.

playdate

2011-01-08T10:03:00.000-08:00

Bria is going over to her friend N's house today for a playdate. We had him over last weekend. It's the first time she's been invited to a friend's house. I hope she behaves herself. I'm a little worried she's going to scream or throw something if she doesn't get her way.

I'm considering making a rule in our house that toys stay in the playroom/family room in the basement, or in bedrooms. Nobody ever plays in the basement, so I'm going to try to force them down there! But also I'm getting sick of toys scattered all over the house. As soon as the new TV bench gets delivered, we're going to move the bigger TV down to the basement, so maybe that will help. But I have my doubts. Today nobody has even watched TV. Bria dragged a couple bins of animals, as well as her Playmobil house, upstairs to the living room and dining room. Good heavy lifting, but now there are toys everywhere!

2011-01-02T19:45:00.000-08:00

I have some pictures and videos from New Year's Eve that I'll try to add another day. I can't stay up too late tonight, because it's back to school tomorrow and one of my resolutions is to get more sleep! And I'm getting up even earlier that usual so I can do some yoga before I wake up Signy at 6:30. Another one of my resolutions is to do some yoga every day.

Anyway, on NYE we went to my sister Tami's house. The kids played all afternoon, our parents came over, Tami made a bunch of tasty appetizers for dinner, and then we went ice skating at the Buffalo ice arena. Mark has been working there part-time (even driving the zamboni) so he let us in after hours and we had the whole ice rink to ourselves. It was lots of fun.

Bria had a friend from school over this past Saturday for a playdate. Those two sure like each other. It was good. And they invited her over next Saturday. That I'm worried about!

Signy started downhill ski lessons at Como Park today. She's taking semi-private lessons with two girls from our block who are 5 and 7. She had fun! I'm glad she got one lesson in before next Friday when she goes to Afton Alps with her 5th grade class. She had almost decided to skip the field trip because she was so scared and her past experiences with downhill skiing have not been fun. But I think she's feeling a little more comfortable about the upcoming field trip now.

Bria started the new session of swimming lessons today. I was nervous about her new teacher because we loved the teacher she had last session. But her new teacher seems pretty good so far. It was just the one time she had a teacher that was too easy on her, and I don't want to pay for a private lesson if they're not going to push her and help her learn any new swimming skills.

Well, I'm looking forward to the kids being back in school so I can get back into my regular routine, but I am not looking forward to getting up early and making school lunches.

Merry Christmas!

2010-12-26T11:58:00.000-08:00

We had a great Christmas. Signy sang at church on Christmas Eve with the children's choir at both afternoon services. Mike and I went to the 4:30 service with Tryg and Bria expecting to put them in the nursery like usual, but there was no childcare. So we all went to the service. Bria had her headphones on the whole time, and really did quite well. She wanted to sit on my lap or have me or Mike hold her the entire time. Tryg was okay too, just kind of loud and squirmy, which is pretty normal for a 3 year old in church.

Signy sang in a quartet from the balcony. She was super excited to do it. I took a video but it's with my iphone and I was holding Bria or Tryg at the time, so the quality isn't the best. And Tryg is talking the entire time :)

We came home from church and had a candlelight dinner of spaghetti with browned butter and mizithra cheese per Bria's special request. She said it tasted just like the trolley restaurant (Old Spaghetti Factory). And she would tell me otherwise, so that was a success. Then the kids got to open two presents. I let them open two because one of them is just Christmas pajamas.

Christmas Eve slideshow:

Bria had a terrible time sleeping that night. She was up constantly between 12 and 7. Finally around 5 or so, we let her sleep on the floor in the attic room next to our room, but she still couldn't sleep. Just way too excited to open presents. So we were very, very tired on Christmas morning.

We spent most of the morning putting together the Playmobil forest lodge for Bria, some of the Playmobil school for Signy, and making train tracks with Tryg. Bria took at least two baths during the day, not sure what that was about. And then we spent a while cleaning up the wrapping paper and the mess since we had company coming. My parents and my sister, Bonnie, and her family came over for Christmas dinner. We had Tofurky roast, among other things, at Signy's special request.

Mike got me way too many things, including a nook color. It's very nice! Much easier than reading books on my iphone :)

Christmas Day slideshow:

20 Helpful Hints for Parents

2010-12-23T07:50:00.000-08:00

Bria's social skills therapist gave us this list of helpful hints yesterday.

1. Use structure and schedules whenever possible.
2. Use charts and rewards to focus on accomplished tasks.
3. State your request, and then disengage from all negotiations.
4. Keep your voice steady and centered.
5. Try to achieve eye contact when talking to your child.
6. Touch your child lightly to help him attend to what you are saying.
7. Keep your directives as simple and clear as possible. If necessary, write them down.
8. Follow through with what you say, including consequences.
9. Encourage physical activity, such as sports, as often as possible.
10. Provide quiet times and places in your home.
11. Love your child for who he is, not who you would like him to be.
12. Praise your child for her individuality and her attempts, as well as her accomplishments.
13. Don't compare children.
14. Explain to your child what has helped you when you feel distracted or impulsive.
15. Be a role model.
16. Say you are sorry when you are sorry. Your apology will teach your child that it's okay to make a mistake. We all do sometimes.
17. Talk to other parents with high-spirited children or join a support group or an organization such as CHADD.
18. Keep a sense of humor.
19. Schedule time away from your children
20. Love yourself, and give yourself permission to take care of yourself.

I think this is a really good list, and I'm going to keep it posted on my fridge. I know how important 19 and 20 are, but they're also really hard to do. Especially when the kids aren't in school. Finding time to exercise with kids at home is near impossible. I can't take Bria to the child care at the YMCA, so when she's home on break I can't really go, unless I go at night when Mike is home. And that doesn't usually happen with me.

But Signy's finally old enough that we feel comfortable leaving her home alone and even watching one of the kids by herself for a short time. So this morning I went to yoga at the Y taking Tryg with me, and leaving Signy and Bria at home.

It was a really good class but I'm so tired that while we were laying down and doing chavasana, final relaxation pose, I fell asleep! In yoga class! Fortunately, it was just for a moment and no one even noticed. Then I walked out of class, checked my phone and saw that Signy had called 5 times while I was in yoga class. Ugh.

Well, while I was gone Bria wanted some peppermint bark and wouldn't stop begging Signy for some. I had just made it before I left and it was cooling in the freezer. The kids had asked to try it before I left but I told them they had to wait until after lunch. But Bria is the most annoyingly persistent person I know when she wants something. She started biting Signy! Signy didn't know how to get her to stop so she gave her some peppermint bark, which was so frozen that it hurt Bria's mouth, so then Bria flipped out over that.

All the relaxation and peace I got out of yoga class was completely negated by this. Well, maybe that's not entirely true. It was a nice hour, that's better than nothing. I just don't know if I'll be able to go next week and completely relax with Signy and Bria at home.

So how do I find time to take care of myself? I really, really badly need to do it.

Christmas program at preschool

2010-12-22T20:36:00.000-08:00

Tryg had his Christmas program at preschool this morning. He did a very nice job. He sang all the songs loudly, did all the actions, yet wasn't obnoxious :)

Here's a video of one of the songs.

teacher gifts

2010-12-21T18:35:00.000-08:00

There are so many teachers and therapists for the kids. Bria has 2 teachers, 4 teacher aids, 2 occupational therapists, a speech therapist, an adaptive phy ed teacher, and a teacher for social skills group. Signy has 3 teachers, an orchestra teacher and 2-3 teachers at ballet. Tryg has 2 preschool teachers. I probably forgot somebody in that list. I usually just give gift cards. Sometimes it's Barnes & Noble. This year it's Target and Caribou Coffee. I'm too particular about food allergies and preferences that I wouldn't appreciate a gift of food myself, so I don't even consider making or buying treats for a gift. I did find some really cool Christmas cards this year though, at the Usborne Book Fair at the YMCA a few weeks ago.

Christmas cards to color! Bria loved them and had a lot of fun coloring them, though I think she hurried through them a little fast.

gingerbread houses

2010-12-21T18:21:00.000-08:00

Bria's second grade class decorated gingerbread houses on Monday and parents were invited, so I went.

In the cafeteria with both second grade classes:

Ta Da!

Back in the CID classroom with her friends (check out the new haircut!):

2010-12-19T20:17:00.000-08:00

Bria got her hair cut on Saturday. It looks so much better, but I don't have a picture. It was getting so long and hanging in her face. Many times we tried putting her hair in a ponytail or pulling it back with a clip, but she'd take it out right after we put it in. Then she started doing this obnoxious head flip to get the hair out of her face. Even the neuropsychologist commented on it. So it was time. We went to Kids' Hair and she was good, just refused the hair dryer as usual.

Mike and I had the neighbor come over last night so we could go out to dinner and a movie. We are so lucky to have a wonderful neighbor girl who is willing to babysit our kids. And they like her and don't cry when we leave!

We didn't make it to church this morning, so tonight we went to the service at Mercy Seat in Minneapolis. I love the liturgy that Ben Kyle of Romantica wrote. At the end of the service, he played "Go Tell It on the Mountain" and even that sounded good (and I think that must be my least favorite Christmas song). Bria and Tryg went into the nursery during the service. When we went to pick them up, Bria was coloring in a horse coloring book that she did not want to be parted from. She asked the nursery attendants if she could "borrow" the coloring book and bring it back next time, but I interrupted and told her no, it had to stay in the nursery. She ignored me and asked the person again. I again told her no. And then she started kicking a toy shelf and knocking toys down. Fortunately, there were no other kids left in the nursery, but it was uncomfortable. Mike took her out to the car, while I stayed with Tryg and Signy and finished cleaning up the nursery for a couple minutes. I wonder how they'll feel if she walks into the nursery a next time.

It's been kind of a rough weekend, behavior-wise. Lots of meltdowns. Lots of barking stuffed dogs. And the usual sibling fighting stuff. I think I might need to create a weekend schedule for her. The schedule works at school, maybe she needs it at home too.

audition

2010-12-16T13:35:00.000-08:00

Signy has been talking about being in a "real play" for years. A few weeks ago, I tried finding a local play she could audition for and the only thing I could find was Princess Academy at Stages Theatre in Hopkins. The bummer is that Hopkins is least 1/2 hour away. I'm happy to bring her for an audition, so I called an made an appointment for January 3. However, the rehearsal and performance schedule is brutal. They rehearse 5 days a week from 6:30-9:00 for at least 4 weeks. And she'd have to skip school for some of the performances. So I'm not so thrilled with her actually doing the play. I want to encourage her interests and give her the experience, but I don't want to drive to Hopkins everyday. In the unlikely event that she gets a small part (and I just say unlikely because she's never done this before), I'm not sure we'll let her do it. And then I'll feel bad for wasting Stages Theatre's time, and getting her all excited. I guess we'll see what happens.

Bria woke up crying with leg cramps last night, so I had to rub her legs for a while until she fell back asleep. And then I accidentally fell asleep in her bed too. I woke and saw that it was 6:09, just about time for me to wake up Signy!

dentist and listening update

2010-12-15T12:42:00.000-08:00

I forgot to come back and update how the dentist visit went last week. I'm happy to say that Bria did an awesome job. The first time she went to the dentist at the U, she was pretty non-compliant. They forced her to sit in the chair, and when she wouldn't open her mouth, they forced a bite pillow in there to keep her mouth open. This time she remembered the bite pillow, and was worried about it. I told her that if she kept her mouth open for the dentist, they wouldn't have to use a bite pillow. So she did! She asked the dentist a lot of questions first, and he reassured her that he wouldn't use the bite pillow. She wouldn't let them use the hose and suction thing, so they decided not to do the fluoride polish (since they wouldn't be able to rinse it out well). But they let her play with the water and suction. She squirted water in all of our hands, and then suctioned it out. We couldn't get her to touch the suction to her own hand, but maybe next time. Baby steps. There was no running and no screaming, and she sat in the chair without restraint, so I call it a success. The dentist suggested that I call our dental insurance provider and see if they'll authorize visits every 3 months instead of every 6 months so we can keep building on her success. He thought maybe once they viewed her past history (and the need for sedation last time), they might agree to it. Otherwise, we'll go back in 6 months.

And she has now been doing Therapeutic Listening for a full month, so I have to return the rental equipment and buy our own. I guess we do already have a CD player, so I don't think I need to buy that. But I do need to buy the Sennheiser HD500A $145 headphones. Ouch. We'll have to take a temporary break from listening while I order them and wait for delivery. I can't say that I have noticed any improvement since we started the listening, but I hate to bail out. I feel like bailing is what we do best, and would like to give this a little more time.

so tired

2010-12-13T04:54:00.000-08:00

For the last few nights, Bria has woken us up. Saturday night Mike ended up sleeping on the couch in the basement with her because she came upstairs so many times. Last night, I slept in her bed with her for a few hours after she woke up. Then after I went back to my bed around 4, Tryg woke me up a couple times. I am so tired. When will my kids let me sleep the whole night. I should go to bed at 9:00 once they're all in bed, but then I get no time to read or blog or just have some quiet.

I must have cursed us. I filled out a form at OT for therapeutic listening and commented that she'd been sleeping all night in her own bed and not waking us up. And then the neuropsychologist asked about it too, and I commented how well she'd been sleeping. ugh.

At the time I went to bed last night, St. Paul Public Schools had canceled for today. Now Minneapolis has too. I was half hoping ours would be canceled so I could sleep in, but now that I'm up, I'm glad the kids are going off to school. Tryg and Bria have played okay this weekend, but also have fought a lot and it's too cold (-9 right now) to send them outside.

2010-12-10T05:12:00.000-08:00

Bria has become fascinated with wells and cisterns. She checked out a book from the school library on Wednesday about oil wells. Then she remembered the well in Tikki Tikki Tembo so Mike took her to the public library to check that out. She claims that on the bus ride from school she sees a well. Yesterday, she got off the bus upset, and I could tell she'd been crying. Her bus driver said that she took a different route home yesterday and Bria got upset about it, because then she didn't see the well. She kicked the seat, cried, and called them all idiots (the idiots is from 101 Dalmations, thank you Disney). Sigh. On the one hand, she misbehaved and over-reacted. On the other hand, the driver has a bus full of kids who like and need routine. Why is she taking a different route home?! (Idiot).

This morning I'm taking her to the dentist. Kind of worried about it. I'm grateful to Melissa who is going to pick up Tryg from preschool and watch him for me while I'm at the dentist with Bria. The one time I took him along, it was really hard to manage her. She ran screaming from the waiting room into the dental school because they were playing some movie with poppy music. I'm trying to motivate her to cooperate with promises of escalator rides and Subway for lunch.

complete DiGeorge Syndrome

2010-12-09T05:52:00.000-08:00

I am friends on facebook with the Ryan and Jenny Dempster Family Foundation. Ryan Dempster plays for the Cubs and they have a daughter with 22q. Today they shared a link from Huffington Post about a baby, Seth, in Indiana who has "complete DiGeorge Syndrome" and is being denied medicaid coverage by the state of Indiana. They define complete DiGeorge Syndrome as the absence of a thymus, and claim only 5-12 children are born with this a year (very rare), and that most die by their 2nd birthday without a thymus transplant. This is the procedure that medicaid won't pay for, calling it experimental. He's already had one heart surgery and needs another, but they want the thymus transplant before they do the next heart surgery.

When Bria had her heart surgery at 5 days old, they did not find a thymus. She was on prophylactic antibiotics for the first 18 months of her life because she had an immune deficiency. We've always believed that she has no thymus. I remember reading about thymus transplants and talking about it, but nobody ever mentioned the possibility of one. Despite no thymus, Bria has been a very healthy girl. I don't know if she's ever even had an ear infection. Have we just been extremely lucky? Or did she really have a thymus that they just didn't see? That seems unlikely, they had her chest completely open! This is just all very curious to me. Maybe there is more to complete DiGeorge Syndrome. Bria must have had some T-cells at birth, even without the thymus.

neuropsych

2010-12-06T19:31:00.000-08:00

We had day 2 at the neuropsychologist today (day 1 was last week). They said Bria did pretty well with the testing. At one point when she was crawling and barking like a dog, they tried to get at the root of why she was acting like a dog and she told them she does it when she's feeling scared. Interesting. When she does it at home, it's at a neutral time when she has free time to do what she wants. So I don't really get that.

So they tested Bria all morning, and we all met together after the testing was done. They seem pleased with the progress she is making in her new classroom. Things to work on include social problem solving and self regulatory skills. We talked about behavioral therapy and the roadblocks we've encountered getting that started. Bria's neuropsychologist knows the man I spoke to at Behavioral Dimensions and she's going to give him a call and discuss Bria and what we need. She thinks maybe they'll be able to come up with a treatment plan that is shorter duration-both shorter amount of time during the week, and also shorter lasting (6 weeks rather than 6 months). And that would be more affordable for us.

She also encouraged us to apply for a Minnesota home and community-based waiver program. She gave us names of doctors at the U of MN Autism Spectrum and Neurodevelopmental Disorders Clinic who could help if we need documentation of Bria's diagnosis for the waiver assessment: Dr. Michael Reiff (pediatrician), Amy Esler (psychologist), and Robin Rumsey (psychologist).

Bria and her friends

2010-12-02T20:50:00.000-08:00

I found this picture on the Little Canada website. It's Bria and her boy friends (these are the boys that came to the birthday party), and I figure if it was on the LC website I can put it here. This was for a school celebration so they all have the same shirt on. Doesn't she look happy? I'll have to print it out for her, she'll love it.

videos

2010-12-02T04:57:00.000-08:00

Bria's teacher has been making videos of the kids at school. I guess the kids really love when she does it. Yesterday, she sent home a flash drive with two videos of Bria, and Bria loved watching them and showing them to us.

The first video was of her and her friend N playing a memory game. I'm not going to show it out of respect for N's privacy, but it was so nice to watch. They were taking turns, saying "your turn" to each other, and being good losers. Everything. They both took the time to line up their cards perfectly. It was cute.

The second video was of her at circle time in the regular ed class. This video made me so proud of her, yet also made my heart break a little.

She's totally doing what she's expected to do. But her body language really makes me sad. She looks uncomfortable, like she's trying to be invisible. Her head is down, she's not looking anywhere, her earphones are on, and she seems curled inward. But despite this, she shakes hands and greets the kids sitting next to her. I'm so proud of her. My amazing girl, I love you so much. I'm sorry that it's so hard for you to be out in the world.

2010-11-29T14:29:00.000-08:00

It's raining here today. When I went out to meet Bria's bus, the first thing the bus driver said to me was "I just want to let you know that Bria is getting written up today."

Why? Because she hit the bus driver. Bria asked the bus driver if it was going to storm, and I don't know the answer the driver gave, but apparently it didn't put Bria at ease about the storm, because that's when Bria hit the driver.

She hasn't had a lot of weather anxiety since fall started because it doesn't rain and thunder too much in the fall in Minnesota. It's not going to thunder today either, this rain is just going to turn into snow as it gets colder tonight. But the driver didn't understand her true question was about whether it was going to thunder. She probably replied that yes, it is going to (snow)storm. So Bria was anxious and scared about hearing thunder and she hit the driver.

When Bria and I walked in the house, Tryg was hiding behind the front door. He got mad when I said I had to shut the door (and ruin his secret spot), so he threw a boot. He sees his sister hitting and throwing, and thinks it's an acceptable response. What should I do? Put them in a time-out for hitting and throwing? We already do that.

downtown adventure

2010-11-27T17:13:00.000-08:00

Yesterday we went downtown to see the view from the top of the Foshay Tower. At our county library you can check out free passes to local museums, including the Foshay Tower, so it was free. Bria had gone a couple years ago with her kindergarten class, so she knew what to expect. We were surprised at how good the view was up there. At first the kids thought it was too cold up there, but after a bit they agreed that the view was pretty neat.

We also had to see the fountain at the IDS center because that's what her kindergarten class did. And she expected a cookie from a bakery in the IDS center because I bought her one when I met her class downtown. We couldn't find the same bakery but she handled it really well. She loved running through the empty skyways, but was good about stopping when we got closer and more people were in the skyways.

She actually told me the other day that she thinks she's a really fast runner. Maybe she has a future in the special olympics? Running used to be kind of awkward for her. She never ran around as a preschooler like Tryg does. But she has adaptive phy ed for 30 minutes every day, so I guess she's been getting some practice.

We stopped in Macy's to get a present for our neighbors' new baby girl, and Bria had a hard time leaving the toys without getting anything, and she got upset over some music they were playing. When Tryg started falling asleep in the car on the way home, she got upset like usual because she thinks if he falls asleep he'll cry when he wakes up and she can't stand the crying. But overall, it was a pretty good trip. Nice to get out of the house and still avoid the shopping crowds.

just dance

2010-11-23T08:01:00.000-08:00

I'm trying to figure out a family gift to give the kids on Christmas Eve. They always beg to open one present the night before Christmas, and I always have Christmas pajamas for them, but that's not the most exciting gift. I got an email/promo about Just Dance 2 for the Wii, and am considering it. It looks like it could be hilarious, and I'm sure Signy would love it. I just don't know how Bria is going to react. I'm pretty sure she will run screaming from the room at the sound of the dance music. So why am I even thinking about it? Because often the sound that makes her run screaming from a room, is also the sound that she asks to hear again. So she might hate it at first, but then she might come back and actually dance. She loves when we have dance parties just listening to iTunes, but still it's a risk.

headache

2010-11-22T19:48:00.000-08:00

Bria had another really bad headache last night at bedtime. She was complaining a little about a headache at bedtime, but she still fell asleep. Then about 45 minutes later she was up and really screaming about how much it hurt. When I asked her what hurt, she hit her head and also her stomach. She was so upset about it she wouldn't really answer my questions. I was afraid she might throw up so I slept downstairs with her. After I finally convinced her to take a Tylenol Jr. chewable, she fell asleep and slept soundly the whole night. I'm not sure if it was a migraine or just a really bad headache. I have to mention these to her geneticist.

random updates

2010-11-19T17:05:00.000-08:00

Bria started Therapeutic Listening on Wednesday. She listens to the CD for half an hour in the morning and another half an hour in the evening. I've wanted to try it for a while but wasn't sure she'd actually comply. When we travel, she refuses to wear headphones when watching movies on the portable DVD player. She has never willingly listened to anything on headphones before. So her occupational therapist has been trying it out with her in the clinic and Bria has been compliant and even interested and happy to do it.

So we rented the CD player, the special (expensive) headphones, and the CD from OT. We were actually supposed to start last week, but about 5 minutes after listening for the first time at home, she complained about getting a headache. So we pushed her for about 5 more minutes, and then stopped. The next day, I just didn't feel like forcing her to do it. So a week went by, and when she went back to OT I talked to her therapist about it.

She told us which volume level Bria had been listening to in the clinic and also reminded me to make sure the R headphone was on the right ear and L was on left ear. So we made those changes (I'd had the volume too loud, and didn't remember noticing the R and L) and she's been happily listening. She's got a belt to put the CD player in so she can walk or jump around while she's listening. They actually suggest that the kids do move around, and in the clinic she played in the gym while listening. But at home, she's just been coloring while she listens.

So she listens to this CD for 2 weeks, we fill out a questionnaire, and then she might change to a new CD. Very interesting. I wish they made the music available on iTunes. If we continue doing the program we have to invest in our own equipment (they don't let us rent forever), and it seems so ridiculous to buy a portable CD player. So last century.

Signy had her first orchestra concert with the bass last night. It was all the beginner orchestra students in the district. They sounded good. I had to haul the bass to school though, that thing is a beast.

Tryg's preschool teacher has been asking the kids to tell her a story which she then records on a piece of paper. This is the story Tryg came home with today: Cars. Talking cars. That's the end. and then Talking cars. I like Lightning McQueen and Lightning's friend called Mac. That's the end. Wow, are you just blown away by his imagination? Signy saw the story, and remembered her complicated story about a zebra. I wonder if I still have her story somewhere.

Right now Bria and Signy are watching the Hannah Montana (sp?) movie together. Kind of amazing. There's a lot of "poppy" music and clapping in that movie. And Signy just came running in to tell me that there is a bass player in the Hoedown song.

birthday parties!

2010-11-06T19:41:00.000-07:00

We had two birthday parties for Bria today. First, we had the party with three friends from school. It was a success! The parents all stayed, and it was really nice to meet them and get a chance to talk to them. All really nice people. The boys were not interested in coloring the wooden picture frame at all! They just wanted to play with our toys, so we didn't even have to follow the picture schedule. They played, took a break for cupcakes, and then played some more. It was really nice.

The kids all have picture books of their class field trip last year to the Children's Museum. Josiah's dad told me that for the entire past week, Josiah has kept the book open to the picture of Bria. I mentioned that next year I'll have the party in the morning because all day long Bria was asking me when her friends were going to get here. And someone said it would be better to have the party like last week, because the kids have been talking about the party for a week. They were all so excited. I'm just so glad she loves these boys so much. They were holding hands and hugging and being silly together.

And then when that party was done, my sister and her family (except poor Mark who had to work), my Mom & Dad, and Mike's sister and her family all came over for chili and cake. It's been a long, but very fun day.

Bria's favorite cake: oreo

the Playmobil park bench! (and that's Cocky her new dog in the background)

DJ Bria with two keyboards (one went back with Rowan)

I have to say a big thank you to my sister for her suggestion that I try a new memory card for my camera. Ever since I got my camera, I've always had some photos that I just cannot get off the camera and on the computer. I'd say like 25-30% of my pictures. It was killing me. I'd see some great photos, but then get a message that the photos couldn't be downloaded. Well, I got a new card and all the pictures I took today were downloaded to the computer. That's the first time ever that a whole batch downloaded. Yay! Why didn't I think of that!?

2010-11-05T22:28:00.000-07:00

I'm staying up way too late tonight. First I had to bake some cakes for the birthday party tomorrow. Then I decided to paint our back entryway. One half of it was an old dingy color, and the other half was just primer from the remodel, so it really needed to be done! Now I'm waiting for the second cake to cool enough so I can frost it.

Bria's teacher wrote me a note today saying she thought the boys coming to the party tomorrow would do okay with a craft. I ran to Michael's tonight to see if I could find anything, but didn't have much luck. I got some wooden picture frames that have animal pictures stamped on them and then markers to color them in. So we could do that. I'm also planning to print out some coloring pages from a site (that I bookmarked on the other computer) that has pictures of each letter in the alphabet and then a couple of things that start with that letter. I'll print out each letter in the kids' names. Hope they like that.

I'm going to make a picture schedule for the kids, I guess. We'll have a tour of her bedroom, coloring activity, cake time, partner play (Snails Pace Race or Connect Four), and maybe play outside. I'd rather we run out of time than we run out of stuff to do!

sleeping in headphones

2010-11-03T19:00:00.000-07:00

I haven't updated that Bria has been sleeping wonderfully in her bedroom. It's been weeks since she's woken us up. However, she has been sleeping with her headphones on. She claims she can hear Tryg breathing, even though their bedrooms are on different floors. And though the sound of people breathing does not bother her during the day, it bothers her a lot during the night.

So the bad news is that it seems we left her headphones at Fraser tonight. We had brought cupcakes to share with her social skills partner (because it's Bria's 8th birthday today!), and the therapist had a treatment plan for me to sign, so I think with that extra stuff, I just didn't notice that the headphones didn't make it home. I'm guessing they're sitting on a table in the room they were playing in. Tomorrow morning before school we'll have to run to Fraser and get them.

But for tonight she was very worried about sleeping without them. She said she was not going to have a good night, and she guessed she'd be waking me up a lot. I stayed in bed with her until she fell asleep. Let's just hope she stays asleep!!

ETA: Okay, weird, I just found her headphones on the bathroom floor. I don't know how we missed them in our pre-bedtime search. I didn't want to wake her up, so I just put them on her pillow.

Happy Halloween!

2010-10-31T19:58:00.000-07:00

We had a cowboy, a cowgirl, and a fortune teller.

My sister, the awesome seamstress, sewed Signy's costume. The crystal ball is an old glass shade from a ceiling light we used to have in the basement. It crashed on the floor about 15 minutes after I took pictures, so then we covered a styrofoam ball with aluminum foil.

Tryg and Bria's costumes were a little last minute. I was going to have Tryg wear Bria's old Thomas costume. But last weekend when Mike spontaneously took Tryg to ZooBoo with our neighbors, he couldn't find the glue gun to fix the Thomas costume, and I wasn't home. So he came up with this impromptu cowboy costume. And Tryg decided he wanted to wear it on Halloween too (he thinks he's Buffalo Bob from the Wild West-Bob the Builder movie). Bria kept saying she didn't want to go trick or treating because she was worried about dogs. So I was just going to keep her home with me. But then she decided she did want to to go trick or treating, and since we seem to have plenty of cowboy hats, she dressed as a cowboy(girl) too.

She only lasted a short while. Mike said she was a lot of work. She was worried at every house that there would be a dog. But she got plenty of candy despite the short time she was out there.

crystal cave

2010-10-29T19:50:00.000-07:00

Today Bria went on a field trip with the 2nd grade to Crystal Cave in Wisconsin. She loved it. Her favorite part was seeing the micro bats. She thought they were "sooo cute".

I've sent out invitations for her birthday party. So far I've gotten RSVPs from 3 of the 5 boys. And it sounds like their parents are staying. She is very excited. I'm a little worried that it's going to take 5 minutes to eat cake, and then we won't know what to do. I would like it to just be casual, and have them go play in the basement. But even with typical kids this sometimes backfires at birthday parties. The dead time can get ugly. But do I want to go so far as to make a picture schedule? I can't even think of any activities to do.

health insurance

2010-10-26T20:36:00.000-07:00

I'm going to whine about health insurance again.

Tonight my parents watched the kids for 4 hours so Mike and I could go to a PACER workshop about funding. They live an hour away, and I am so grateful they are still willing to come and babysit the kids.

Well, I did learn some new things at the workshop but mostly it just made me angry at health insurance CEOs.

So here is the broken record story, again. Last year, Bria's neuropsychologist recommended in-home behavioral therapy. We didn't do anything about it. Partly it's because I hate making appointments and talking on the phone, and partly because life is sometimes too overwhelming to do anything other than get through the day, and partly because some days are good and I want to live in denial for a while and think we don't really need behavioral therapy.

But we had a lot of days this fall where we felt in crisis, so I started making phone calls. From the provider that the neuropsychologist recommended, I found out that the only way to pay for in-home therapy is out of pocket or with medical assistance/waiver. Private health insurance will not pay for it. Not Medica, anyway. This was confirmed by Fraser, another provide of in-home therapy who we use for social skills class. So then I started looking into applying for MA. Since we are not a low income family, we have to pay a parental fee based on a sliding scale. The parental fee we would pay is just a few hundred less than paying out of pocket.

At the workshop tonight, I learned of changes they are making to eligibility criteria, partly in response to budget cuts. And I learned of waiting lists in the thousands for Developmental Disability waivers. With the new eligibility requirements, it will be harder for kids to qualify for PCA services. I'm not sure that we want to use PCA services anyway, but the kids who are cut from PCA services will then have to apply for waivers to get the services they need, and those waiting lists are already really long. Right now PCA services can act as a kind of bridge until kids get the waiver. And it's fairly inexpensive. Without PCA services, they may have nothing while they wait.

I know that Bria would qualify for MA based on her diagnosis, and MA should pay for the in-home therapy, but it's a huge financial burden. We would have to stop saving for the kids' college funds and we'd have to stop saving for retirement. And maybe I wouldn't mind so much, if I wasn't already paying for good private insurance! It just makes me so angry that our private health insurance can discriminate against Bria for having autism. They shouldn't be able to deny coverage for proven therapy (ABA). They make huge profits by denying coverage. Forcing the state of MN and the federal government to pick up the tab. It's wrong.

I need to figure out who I can contact about this, and start writing some letters. The speaker at the workshop tonight reminded us that we vote next week. Who is going to stand up for health insurance companies and protect their bottom line and who is going to protect services for my child? I'm pretty sure I know.

birthday party

2010-10-20T19:50:00.000-07:00

Bria's 8th birthday is in 2 weeks! And she wants to have a birthday party with friends for the first time ever. She wants to invite the 5 boys from her class at school. Her teacher told me they've all been talking about it.

What am I going to do? I can't think of anyplace she'd really like to have her party. So I guess we'll have it at home. Can I really handle a birthday party where there are 6 kids with autism? Do you think the parents will want to stay? I don't have enough comfortable chairs for that many people in my house. How will I survive the social expectations of that? Oh boy.

And what activities will we do? Maybe just short and sweet - have some cake and ice cream and hand out goodie bags. I really don't want the kids to buy presents for her, but I imagine that will not go over well with Bria. But I can also see her not being polite about getting presents she doesn't want.

I should probably send the invitations to school next Monday. That gives me a few days to figure this out. I am such a terrible hostess in typical situations. I'm pretty worried about this one.

It would be nice if her OT clinic hosted birthday parties. They have that awesome gym with the ball pit and the swing.

cuddle venti

2010-10-16T08:43:00.000-07:00

We have a box of register covers down in the basement, waiting to be installed by the project manager. Bria has been asking if she can take one out of the box, because apparently she loves vents. I kept saying no, but Mike thought it would be okay. So for the past 3 nights she has slept with a register cover. She calls it her cuddle venti.

And today at the park, while she was on the monkey bars, she said "look out, vent lover coming through!"

figuring out health insurance/medical assistance

2010-10-13T08:22:00.000-07:00

Okay, the Lovaas thing is not going to work. They want us to hire a staff who will carry out the ABA in our home. I don't want to do that.

I left a voice mail with Fraser on Monday about their in-home therapy services and still haven't heard back. Their website says funding for in-home therapy is usually MA, waiver, or private pay. Why doesn't health insurance pay for this!?

Behavioral Dimensions could still work out I just have to figure out the funding. If we pay out of pocket it will be around $1600 a month. Our parental fee for MA will be around $1300 a month. So MA seems to be the way to go.

I've got the application for MA mostly filled out, I was just hung up on finding the right identification documents to send in. But I just called the Department of Human Services and they said that since she's under 16 I just need to send a copy of her birth certificate. So I'll try to get that in the mail today.

The dilemma is what to do about our private insurance. The open enrollment forms are due at the end of this month. There are 5 cost tiers to choose from and we are currently in the most expensive. Next year it will be $900 a month. This allows Bria to see her cardiologist, geneticist, immunologist and neuropsychologist in network without any referrals. We could drop down one level into the U of M Physicians Care System since that's where all these specialists are, and that would save us $110 a month.

I'd really like to drop down to the HealthEast Care System which is the low cost group and would save us $400 a month. That would be a big help with the huge MA fee. We'd be paying around $1700 a month for health insurance + MA vs. over $2100 a month. The kids' pediatrician is at HealthEast, so I know we could keep seeing her. However, I'm afraid that we couldn't take Bria to her specialists. PACER told Mike that as long as the U of M Physicians take MA, then MA will cover it. But when I asked DHS about it, they said they couldn't guarantee it. If we take her out of network, MA might not pay for it. So what to do?! This really stinks. I wonder if we dropped down to the lower level, and ended up paying out of pocket for some of Bria's specialists if it would still come out cheaper than $2100 a month. (I just checked online and last year's visit to the neuropsychologist was a charge of $1900 and Medica paid $950).

PACER also said MA could pay for some of our private insurance premium but I forgot to ask DHS about that.

There is a funding workshop coming up at PACER in November that I'd really like to go to, but that doesn't help me now.

ABA

2010-10-07T20:23:00.000-07:00

I'm just wandering around the internet trying to find more home-based behavioral therapy. The Lovaas Institute has a center in Minneapolis and their website says that with early intervention many children with autism achieve normal educational and intellectual functioning by age 7. Wow, do I feel like a failure for not subjecting Bria to ABA since she was diagnosed at 2 1/2. A lot of these interventions are for younger kids. All of a sudden my kid is too old and I haven't done enough.

I'll wait to hear back from Behavioral Dimensions next week. It really looks like the best fit. Most of the other centers I've seen only offer services in their clinic. I need someone to work with us at home.

how bad it is

2010-10-06T19:24:00.000-07:00

I got the call back from TM at Behavioral Dimensions. Although I had already completed a long form, he wanted to get more information about the challenges we have with Bria. It's bizarre. I had trouble thinking of the types of behaviors we need help with. All I could think of was that she has trouble sleeping in her bed, we can't go to church, we can't go to the movies, and we go for walks or bike rides and she freaks out about dogs. As I was talking, it didn't really seem like therapy worthy stuff. He asked about other routines during the day like getting ready for school or getting along with siblings, and I didn't have anything bad to say about those, other than typical kid struggles. It's like my brain is in denial about how challenging she is. I don't want to admit it, or something.

I know I've posted about this before. How I don't really think that her autism is that severe. Yet it must be. Last night at the ASD support group meeting, there were 11 parents there, representing 12 kids. Ten of those kids are functioning fine in their neighborhood schools. Only 2 of the kids are in the autism program at LC. Bria is one of them. Her autism must be pretty severe. I just don't want to admit it.

At dinner, Bria started whining and screaming about what we were eating. It had been social skills night so we were eating later than usual and I just made something easy (curly noodles cooked in vegetable broth, steamed broccoli, and grapes). She was trying to make all these deals about how many grapes she would eat, etc. (Frustrating to me because last week she refused apple slices and said she wanted grapes.) She would not be quiet about the food. To the point that no one else at the table could talk. It was just Bria screaming. And Mike said, when someone asks you how it is, remember this moment. We have moments like this all day long. Poor Signy can never have a conversation with us without being interrupted by Bria screaming about something. It was not an enjoyable dinner time.

I cry nearly every day because these moments are so challenging, yet my brain freezes when someone asks me what I need help with. But I also realized that I have hardly any expectations of her at home, in order to avoid conflict.

So anyway, after that brain freeze on the phone, TM explained more about their program (very parent focused; the kids are there, but the point is to train the parents over a 6-18 month period, 6 hours a week in the home) and then mentioned that historically Medica (our health insurance provider) does not pay for this. The only health insurance to cover it in the metro area would be Blue Cross Blue Shield, which is not an option for us.

If we pay out of pocket, they charge us the same rate that they are reimbursed by insurance which is $67 an hour. That works out to be $400 a week or $1,600 a month. We can't do that. He asked if Bria had Medical Assistance or a case manager. No, we've never applied for MA because our income is too high. We could get TEFRA-MA and pay a parental fee but I've always been afraid the monthly fee would be too high and not worth it. We already pay $900 a month for our health insurance (in order for her to see her cardiologist, immunologist, etc. without a referral).

But getting her into the system has been on my list forever! so I went to the website for the MN Dept. of Human Services and printed out the application for MN Health Care Programs. I've been told to get her in now before she gets too old. The older she is the harder it is to get her in. While I was on the website, I calculated our parental fee for TEFRA and it would be $1300 a month. We can't do that.

So, while it sounds like a wonderful program that we desperately need, I don't see how it's going to happen. Isn't that lovely? I detest insurance companies and their control over my life. Instead maybe I'll go insane, or get really fat from all the stress, and then I'll have different medical bills they'll have to pay.

2010-10-05T20:32:00.000-07:00

I've been so busy with the house that I haven't taken the time to write much, but a lot has been happening.

Bria came home from school last week with a picture of herself holding a book that she read! Very exciting. It was called Asha in the Attic. She seemed pretty happy and proud. She wrote "attic" in chalk on the sidewalk.

By listening to a toy keyboard that plays songs, Bria taught herself to play the opening lines to Frere Jacques. I showed her the rest and now she can play it on the piano. She figured out part of a Ravioli song too. Very cool. (I guess I need to teach her some Journey, huh Tami?) I need to call Fraser and ask about piano lessons. She's got the long, tapered fingers for piano, thanks to 22q.

I got a voicemail from Behavioral Dimensions today. I returned the call and got voicemail, so hopefully I can speak to someone tomorrow. I was expecting to wait forever to hear back from them after submitting the intake paperwork. And maybe we will still have to wait forever for the therapy to begin. I guess I'll find out when I talk to them.

Night-time continues to be a challenge. Mike and I are super tired. She's going to bed fine in her new room, except for the fact that we all have to walk around on tip-toes. If she hears the floor squeak she starts screaming. So it kind of stinks. We put her to bed and then walk around quietly all night, shushing every noise that Signy makes. But the worst part is that when she comes upstairs to our room in the middle of the night, she's being noisy and we can't fall back asleep. We have a monitor in our room so we can hear Tryg, and a few times when she's been up in our room he has started crying in his sleep and then she has started screaming. So then she wants to go back down to her room, but doesn't want to walk down by herself. And she's been complaining about her blankets over and over, and asking me to get them right. So I try to lay the blanket on her differently/better but I don't know what's exactly wrong, so I don't get it exactly right, and she continues to complain about it. So we have no idea to get her to stay in her room. I wish it was as easy as giving her a sticker, a la Parenthood.

I went to the ASD support group meeting for our school district tonight. I love going to those meetings, but at the same time, so many of their kids are doing so well, it makes our challenges seem so much bigger.

Bria's new room

2010-09-30T19:33:00.000-07:00

We got Bria's bed and everything else (except clothes) moved into her new room today. She seems to really like it. I think maybe it doesn't seem so scary anymore now that it looks like a real room. And she got to borrow a toy keyboard from her cousin R, so she's been in a really good mood all afternoon and evening. She must have spent 3 hours down in her room after school playing with the keyboard. Here she is posing with the keyboard on her bed.

2010-09-28T19:48:00.000-07:00

This is the color I painted Bria's new room yesterday.

I hate it. She really, really wanted pink. I tried to talk her into a paler pink, but she said it would just look white. I'm the parent, I know I could have insisted on a paler pink, and I probably should have. But I wanted her to be happy with her room. She doesn't like her current room and never wants to sleep there the whole night.

Well, anyway, tonight Mike was painting the walls in the stairway going upstairs and Bria was complaining about all the noise. I told her I'd haul her mattress down to her new room and she could sleep down there. She was so excited! But it quickly turned into a disaster. I was thinking the basement would be a quiet room for her, but actually it's not. She could hear us walking upstairs, she could hear the kitchen cabinets shutting. She said she could still hear Mike painting. And she screamed and cried.

So she's back in her old room for the night. She'll be back up to our room around midnight.

I told her if she's not able to sleep in her new room then I am not keeping it pink. I have done so much painting in the last 4 days (4 rooms including 3 ceilings) that the thought of repainting that room makes me sick. But I will not keep that room pink if she's not going to be in it.

But then where do we put her?

This big, painful remodel and in the back of our minds we knew it would come to this.

As much as I want a totally separate master bedroom, we might have to put her in the hobbit room next to our room. Maybe if she's that close to us she won't get out of bed every night.

So now we have a new guest room in our basement, I guess.

I just have to paint it first.

I am tired of everything being so hard.

therapy swing

2010-09-23T07:09:00.000-07:00

I've been thinking that we should get a therapy swing for Bria's new bedroom. When she was at autism camp last summer, at pick-up time I always found her in the therapy swing. And her therapists at OT always tell me how much she loves their swing. IKEA has a hanging swing and it's not too expensive but when I asked her OT about it, she said that the fabric doesn't hug like the one they have. I didn't ask what kind they have because I figured it was too expensive.

So I googled therapy swing and found The Cuddle Swing Arsalooly. It's made of cotton with a bit of spandex, so it would wrap around her. And it's a lot cheaper than I was expecting, just $75.

But when I mentioned to Bria that I thought we'd get a swing for her new room, she said "you mean an Airwalker?" So I googled Airwalker swing, and they're super expensive, of course. The Airwalker is $300 :(

I don't know. Seems crazy to spend that much on a swing, but I'm afraid if I get a different one she won't use it. And since it's therapeutic (calming) it might be worth the money.

random Bria updates

2010-09-21T21:53:00.000-07:00

1. I forgot to mention that last week at OT, Bria wore the headphones and listened to music for therapeutic listening. I would go ahead with starting the program at home, except they have a waiting list for renting the CDs and equipment. It would be hundreds of dollars for me to buy everything, so I guess we'll go on the waiting last and wait a few months. Darn it. Wish I had known about the waiting list months ago when I was first considering the therapy.

2. I can't remember if I mentioned that last week at social skills dyad, the other girl was screaming a lot, and Bria didn't have her headphones. Bria and her therapist ended up going into a room by themselves. Not the greatest environment for learning social skills. I don't know if we'll continue. I'm going to bring her tomorrow and see how it goes. If it's more of the same, we'll discontinue.

3. Fraser offers piano lessons and I'm really interested in sending Bria. She says she doesn't want to because then she couldn't play her songs (that she makes up). Remember "John, Johnny, Rick"? (Something odd is happening here).

4. I finally mailed the intake form to Behavioral Dimensions yesterday. We're interested in their Family-Centered Behavioral Intervention in which a therapist would come to the house twice a week for a couple hours each time and "empower parents to manage their children's learning and behavioral challenges through a fundamental understanding of the principles of Applied Behavior Analysis (ABA)." I have no idea if our insurance will cover it.

5. Bria's teacher at school is making a change to her IEP, requesting accommodations for standardized testing. How does a child who can't read take the MAP test? Someone will have to read it to her, in a separate room, with an unlimited amount of time. Remember my rant about these tests and NCLB?

6. After letting her ride the bus without a seat belt for the first couple weeks, her driver asked me today if it would be okay to use a seat belt again. She gets out of her seat, and bothers other kids. Only kids with autism ride her bus. I think she's the only one wearing a seat belt. Sigh.

7. She's having a problem at school keeping her hands to herself. And imitating bad behaviors she sees.

8. She has an awesome swim instructor this session at Foss Swim School.

9. It's about time for Bria's nighly migration to the floor next to our bed, so I better get up to bed first!

Heyd for House

2010-09-11T20:49:00.000-07:00

My dad, Tom Heyd, is running for the MN House of Representatives, and today he was walking in his last parade before November. Signy had ballet so she couldn't make it, but I decided to take Tryg and Bria. Usually my mom doesn't walk the parades, she just waits at the end, so I thought Bria could just wait with Grandma Jo Jo. My sister, Tami, who has walked in just about all the parades this summer, warned me that they yell chants while they're walking. So I was pretty sure being in the parade would be too loud for Bria.

But when we arrived, I found out that my mom was planning on riding on the float this time. I wasn't too sure how this was going to work.

I started to feel that maybe Bria would be okay because while we were waiting for the parade to start, lined up with all the other floats and tractors, she was fine. My sister had brought her puppy and Bria loves Shadow, so she was happy. But then the cement truck lined up next to us (no idea why a cement truck was in a parade) made some loud hydraulic? sound, and Bria got upset. She started crying that she wanted to leave. Uncle Mark said he'd take her to the van to watch a movie, and he didn't mind missing out on the parade since he'd been to all the others. But I felt bad.

We waited a while longer for the parade to start. I think Mark talked to Bria in the van about walking in the parade. When she got out of the van to look at some horses, I asked her if she wanted to ride in the stroller with the shade rolled down and watch a video on my iphone during the parade. She thought she could try that.

So she got all settled in the stroller, but when it was just about time for us to start, she decided she was going to ride in the float with Jo Jo. And she was great the whole time! She loved it! Waving to everyone like she was a celebrity.

Tryg and his cousin Sara waiting for the parade to start.

Tryg pouting because he doesn't want to ride in the float after all.

Walking with my dad :)

My phone rang and I answered it "Hello, I'm walking in a parade right now."

It was Mike, trying to make arrangements to meet us.

first day of preschool

2010-09-09T18:33:00.000-07:00

Tryg had his first day of preschool on Wednesday. It was a short day, just 1 1/2 hours. He seemed to like it. He's back on Friday for the full 2 1/2 hours. I'm so worried about him going pee or poop in his underwear.

They told me he can wear a pull-up, so I guess that's what we'll do. And just hope that he sees all the other kids using the bathroom, and it finally clicks for him.

There's a little boy in his class named Soren. I love that name.

Don't take a picture of me.

social skills

2010-09-09T12:43:00.000-07:00

Today we had a crazy running around afternoon. I picked Bria up from school early at 3:15 so I could get Signy to her last golf lesson at 3:30 and Bria to social skills at 4:00. Signy would be done at 4:30 and Bria would be done at 5:00, but then Signy had dance class at 5:00. So the plan was I'd get Signy at 4:30 and drop her off at home to change into her dance clothes. I'd get back in the car to pick up Bria from social skills at Fraser. Signy would wait at home for Mike who was leaving work early in order to take Signy to dance at 5:00.

However, when I got to Fraser at 4:00, I discovered that Bria's social skills partner had canceled yet again. Apparently they left me a message at 3:00 telling me not to come, but I was already in the car on the way to get Bria from school. Arrrrghhh, so frustrating. Especially since Mike had already left work, and now it wasn't necessary. Since Bria couldn't have social skills without the other child, now I'd be able to take Signy to dance.

This family is driving me crazy. Once Fraser made the match between their daughter and Bria, it took this family forever to be ready to start. I think Bria and the girl have only had 2 sessions together. They have canceled or just not shown up for many of the sessions. They keep having new excuses. The latest is that now she can't meet until 5:00. So I think we're going to switch the time to 5:00 and see how that goes. Fraser is thinking of requiring them to call me if they have to cancel, thinking that maybe if they have to talk to the other family they'll realize they're actually affecting another family. Now it doesn't seem to be sinking in.

I just want Bria to have some social skills practice. Her mental health practitioner said this problem always seems to happen with dyads, and that's why Fraser had stopped doing them. One family is all into it, and the other isn't. Because Bria got kicked out of their larger social skills class, there is nothing else for her at Fraser. I can't believe they don't have a small group class, with just 3 kids. I bet half the time it would just end up being 2 kids and that would work.

I don't think of Bria as severely autistic because she is so verbal and able to do many things for herself. Her official diagnosis isn't autism, it's PDD-NOS, which is usually thought of as milder than autism. Sometimes, as challenging as she can be, I don't even think her behavior is that severely autistic. But I don't know anybody else who got kicked out of social skills class and mainstream education.

First Day of School

2010-09-07T11:43:00.000-07:00

Signy on the first day of 5th grade. Still kind of dark out at 7am.

Bria on the first day of 2nd grade. Holding a baby doll she named Jacob.

Tryg laying on the couch, insisting that I take his picture too.

school

2010-09-06T20:15:00.000-07:00

Tomorrow is the first day of school for the girls. Tryg starts preschool on Wednesday.

We managed to make it to Signy's 5th grade open house/meet the teacher, and to Tryg's preschool open house, but I didn't make it to Bria's. It was scheduled for last Thursday from 5:30-7:00 and she was at Fraser until 5:00. Mike had to work late, so I figured I'd get home from Fraser with the kids, we'd eat a quick dinner, and then run to Little Canada for the open house. But once we were sitting down to eat at 6:00, I re-read the open house announcement and it said the meet your teacher part of it ended at 6:30. The teachers would be closing their doors at 6:30 and heading outside for the end of the BBQ (which I didn't want to attend: we're vegetarian and that sounded too social for me). So crap! We're not going to make it by 6:30! I tried to hustle the kids out to the car, ragging on them to hurry up, but as we pulled out of the garage at 6:21 I realized we would never make it. I didn't want to just meet her teacher, I also wanted to drop off her school supplies. I just drove around the block, and parked back in the garage. Completely ticked off. My fault. Should have gone straight from Fraser to Little Canada.

So I'm feeling bad and guilty that I didn't get there for Bria. She doesn't care, but it just makes me feel like I didn't try hard enough for her. She is having the same teacher as last year in the autism classroom, but she's also assigned to a regular 2nd grade classroom and I don't know that teacher. I wish I could have met him or her. Oh well, I still hope to.

I hope we all get up on time, they get on the bus without incident, and they each have a great first day! I'm feeling a little nervous about Bria.

2010-09-06T20:02:00.000-07:00

Yesterday it was such a nice day that we wanted to do something outside. We decided to take the kids to Harriet Island in St. Paul for a short walk along the river and some time on the playground. Signy was at a friend's house for most of the day, so it was just Bria and Tryg. After a quick trip to Lowe's to look at tile and refrigerators, we stopped at Sonic for some refreshments. It was the first time I had a Sonic limeade, and I loved it. I've been craving cranberry juice lately, so I got a Cranberry Limeade. I'll have to come up with more excuses to go to that side of town.

The kids had a lot of fun at the playground. It had a sloped concrete table with a faucet at the top end (about the height of Bria's chest) and sand covering the ground around it. The kids were making dams, walking through the sandy water, etc. We had a fun time, but we were getting hungry.

We headed for a restaurant near home where we could use a $10 coupon. When we pulled up we noticed that kids eat free on Sundays, so it was going to be a great deal. However, once in the restaurant, the kids were really badly behaved. While Mike and I were standing at the counter trying to read the menu board and decide what to order, Bria and Tryg started chasing each other around the restaurant. Loudly. I went to grab them and bring them back to some benches by the menu board. Tryg fell down and started crying. The head of the toy dog that Bria was carrying broke off and she started screaming. So we left. It was embarrassing.

They were pretty upset that we weren't staying. I was pretty upset as well. I didn't feel like making dinner! Those are the hard times. When you have to discipline your kids, and the result feels like you're losing too. But I'm hoping that next time we go out to eat, or just out in public, I can remind the kids what will happen if they scream and run around.

2010-09-03T20:18:00.000-07:00

Bria has been waking us up a lot at night and every time she does I have to walk her back down to her bedroom. She always goes back to her bed easily, but after walking up and down the stairs, I am awake. Just when I start falling back asleep, she comes back upstairs. She says her room makes sparkly noises, and she doesn't like it. So I decided to put a pillow and comforter on the floor next to my bed, so when she comes upstairs she can just go to sleep on the floor. We've had two successful nights with this. I'd prefer that she stay asleep in her bed, but this is better than having to walk her back down to her bedroom. Last night Mike never even knew that Bria came up and was sleeping on the floor.

She seems to be pretty excited about starting school next week. I think she's a little anxious because every day she asks me if she has to go to school. But she's also talking about seeing some of her friends again.

Yesterday I brought her to social skills group and the other little girl didn't show up. Apparently her father called earlier in the day to cancel her Care Cab ride to Fraser, but he didn't cancel social skills. So Fraser couldn't call me and tell me not to come, since they didn't have a definite cancelation. Bria ended up staying anyway and just playing/working with her therapist. On paper, this little girl seems to be a good match with Bria for social skills group, but there have been a lot of problems with her not actually making it.

Next week Bria is going down to once a week for OT. She'll be going before school on Wednesdays. It's going to be a little tricky getting Tryg to preschool on time and then running her up to school on time. I hope I don't get too stressed about it. Her therapist is going to help her try out the Therapeutic Listening program. We can rent the headphones and CDs at first to see if Bria will do it. I think she has to listen 30 minutes, twice a day. It's going to be interesting to see if she does it. Though she will wear her noise blocking headphones anytime she's worried about noise, she doesn't like to hear music or movies through headphones.

getting out

2010-08-15T21:13:00.000-07:00

Today was a long afternoon. Mike went to play soccer in the old folks' league, and left me with crabby kids for nearly 3 hours. It was a beautiful, breezy day so I had all the windows open in the house. Signy was walking around closing all of them because she was cold. Then she started closing all the shades so she could see the movie she was watching on the laptop. When I asked her to watch the movie in her room where she could make it as dark and warm as she needed, she had a complete meltdown. I decided to take Tryg and Bria outside to play in the backyard where I could ignore Signy's tantrum. When she tried opening up her bedroom window to whine and complain out the window, I told her she had to shut the window. So then she started putting sticky notes on her window that said things like "Why me?" and "Why are you so mean to me?" Seriously. I don't know how we're going to make it through the teen years.

She finally calmed down and came outside all loving and apologetic. Then Tryg started having a fit about the swing being too short or something. So I locked myself in the garage for a few minutes.

Mike came home from soccer while Bria was in the middle of a time-out for hitting me. He wanted to do something outside as a family, to enjoy the nice weather. I'd had enough of the crabby kids, and didn't feel like doing anything with them. I just wanted to crawl in a hole.

He convinced me it might be good for them to get out of the house and do something. So we did. And we had a great time. We packed some food and had a picnic next to the cherry & spoon at the sculpture garden and then we wandered around and looked at all the sculptures. The kids loved it.

My preference is always to stay home. I am such a homebody. I think doing things with the kids is so hard. And it is, but I have kids, this is my life. I have to get over it.

Tomorrow the week of sheetrock starts, so I am going to have to leave the house with the kids a lot. I'm trying to come up with things we can do. On Monday, we're going to Maplewood to visit the mall with the carousel, hang out at Barnes & Noble, have lunch, and then go to OT. Hopefully the sheetrockers will be mostly done by the time we get home. No idea what we'll do the rest of the week.

neuropsych

2010-08-13T23:31:00.000-07:00

We got a letter from Medica today that nearly got my undies in a bunch. Yeah, not a good mail day. The letter said that Bria's neuropsychologist was no longer a covered provider and if we continued to see her, the visits would not be covered. When I called Medica to see if they could recommend another provider, they told me that actually she is still a covered provider, she just didn't get her yearly credential info in on time, so they sent out the letter. Geez, what a silly waste. But I am hugely relieved that we don't have to find someone new!

But as I was getting all worked up, I couldn't remember when she was actually due back at the neuropsychologist, so I read through her file. The one that should be better organized with notes from every doctor visit.

One thing that the neuropsych recommended last December that we haven't done, is a consult with a developmental behavioral pediatrician around possible pharmacological management of her symptoms: short attention span, poor impulse control, and anxiety as exhibited in her perseverations. I'm just so wary of going down that path. I don't think we're ready for that yet.

Another thing that she recommended is family-centered behavioral intervention.
Family Centered Behavioral Intervention (FCBI):

Service description: Board Certified Behavior Analysts teach parents to generate solutions to problem behavior inside of difficult

routines. Parents learn functional assessment techniques and are gradually introduced to making independent treatment

recommendations

Time commitment: Five hours of service; two 2.5‐hour blocks of time each week

Length of service: Services range from 6 months to 2 years depending on scope of family needs – we include all members of

family in treatment planning.

Where the service takes place: Service occurs in the child’s home; caregiver must be present

Five hours a week in the home is a pretty huge commitment, but we need to do this. Bria has become the largest personality in the family and nearly all decisions revolve around her. That needs to change. There is too much frustration and resentment in our family. I just don't know if Medica will cover it.

NCLB rant

2010-08-13T23:08:00.000-07:00

We got a letter from Roseville Area Schools today that really annoyed me. Apparently, for the 2nd year in a row, Little Canada Elementary (which Bria attends) did not make Adequate Yearly Progress (AYP) toward the goal of all students being proficient in reading.

In 2010, the cell that did not meet the state proficiency in reading was Special Education. In 2009, two cells did not make the target but they don't name those cells. Nice that they can single out special education and blame them, but they can't name any other demographic. But also, DUH!!! I am not surprised that special education students are having a hard time reading. Of course they are going to make slower progress.

So as a consequence of this distinction, two things are going to happen. First, a team of LC teachers and administrators is developing and will implement a School Improvement Plan. Ugh, what a waste of time and money. I trust that Bria's special education teachers are already working very hard trying to teach their students how to read. They have a very hard job. I don't see how a School Improvement Plan is going to help. And second, Little Canada must provide School Choice for families of students at LC who no longer want to attend LC because of this distinction. Transportation to the school of choice, which in most cases will farther away, will be provided at no cost to the families. Another waste of money. Thank you No Child Left Behind. God knows you wouldn't want your children to be educated at a school with a large group of kids with autism and other learning disabilities who are bringing down your schools' reading scores.

Ticked off. Why oh why do we still have No Child Left Behind? Stupid.

And I wonder, if this school is so deficient, why was it named a Minnesota School of Excellence last year? Oh this is why:

“In this time of high stakes testing, the quality of our school communities can far too easily be misrepresented by the single-purposed federal testing requirement,” said P. Fred Storti, MESPA executive director. “High stakes tests, such as the MCA II tests used to evaluate Minnesota schools for Adequate Yearly Progress as required by the federal No Child Left Behind Act, offer a snapshot in time with no context. One high stakes test should not determine a school’s public stature and cannot adequately assess its educational effectiveness... and the Minnesota School of Excellence program clearly connects the education process to student learning."

Because they know NCLB is a crock.