musical today!

The 3rd and 4th grade classes at Bria's elementary school are performing a musical today, and Bria has memorized a line to speak into the microphone. I'm so excited to go and watch her today. Tryg and I are going to go this afternoon's performance, and then the whole family will go to tonight's performance. Can't wait to see it!

Update: Here is the video. I would like to edit it and try to zoom in on her.  And add the video of her closing her eyes and sticking out her tongue every time the audience laughed. It was pretty funny, but it's in a different video (on a different device) so I'll try to add that if I ever understand iMovie. It's not going to happen today. I have to study iMovie but Tryg is building Legos at my side while I write this. And while he builds he is narrating his build, just like they do on Lego.com. With that narration going on, I can barely think to write this blog, let alone figure out editing in iMovie. Maybe I need to go to the apple store for a class.

After the evening show, we went out for pie to celebrate how well she did. She knew we were going out, and she was torn between going to Culver's for a big Oreo ice cream sandwich and Baker's Square for pie. She kept changing her mind about it and giving me an update. Even during the last song at the afternoon performance, she stopped singing at said, "Mom! I guess I want to go to Culver's now." Hilarious. Perseveration queen.

Also, that girl has a crazy memory. Monday night (yes, we've been talking about where to go since Monday night) she reminded me that she was tickling the waitress at Baker's Square the last time we were there. The last time we were at Baker's Square was Pi Day (March 14) 2011, nearly a year ago. I had forgotten all about our last visit. I can only vaguely remember the tickling; I mainly remember she was chatty with the waitress and the waitress was nice about it. So we had a talk about how that was inappropriate and why. But then last night, we sat down at the table and Bria told the waitress that she had tickled her the last time we were there. And the waitress looks at Bria and says, "Yeah! I remember that." Bizarre.

Bria's line starts out "They were the ancestors.."

playing in the snow

We finally got enough snow in MN for the kids to make some snowmen. And it happened to fall on a day when they don't have school.

Bria wanted a snow dog. I tried.

Then we all came inside for a hot cocoa/tea party lunch.

22q conference in Disney

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

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

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

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

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

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

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

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!

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

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

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

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

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

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

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

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

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

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.



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

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

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).

Read more: http://wiki.answers.com/Q/How_many_miles_deep_is_the_ocean#ixzz1YLL7ve4W

dentist, IEP

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

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

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

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!

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

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

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

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

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.