Another breakthrough

One of the speech goals on Buddy's IEP is "increase vocabulary to enable three- and four-word sentences." He will echo pretty much anything we say or sing and occasionally he'll say things on his own (not necessarily clearly), but today he said what may be the longest and clearest sentence I've ever heard from him -- six words!

Granted, his phrase was, "Wanna watch TV on the computer," but nevermind that part. He actually said what he meant and meant what he said -- and it was understandable.

And so, because he'd done such a good job, we did, in fact, watch TV on the computer, meaning we watched some YouTube videos of, in this case, tricycles and unicycles. Oh, and a few airplanes.

Breakthroughs

We started working with Kieran on potty training in May or June of 2011. I can't count the number of times I've said, as I'm carrying him to the bathroom while he's in the middle of going or has already gone in his diaper, "You need to tell mommy when you have to go to the potty. You need to say, '[in my best singsong voice] Mooommmy, I have to go poooootttttyyyy.'" But he just won't tell me.

My most recent incentive for him is letting him blow out a candle, something he really likes and something that also serves as speech therapy, when he goes. And, finally, the past few days, he's said (albeit quietly and in an oh-by-the-way kind of way), "I have to go potty." And I've taken him and he's gone. I'm hoping this is the breakthrough we've been waiting for on this front.

Another breakthrough that thrilled my heart today happened on his tricycle. His aunt and uncle gave him a tricycle last year for Christmas, and he's been pushing himself around on it since then. We've continually tried to get him to push the pedals with his feet to no avail.

This past Christmas, we got him a bike with training wheels, thinking maybe he would be more interested in riding on that but we weren't successful. I think part of it may be that the muscle tone in his legs is low enough that he can't move his legs as he's supposed to in pedaling. I wish now that I had kept the PT he had a year ago instead of letting her go when she thought he didn't need her.

At any rate, we've let him use the tricycle both outside and inside, so that he can keep practicing. Today was an inside day since it was a bit on the chilly side, and I was once again pushing him around the kitchen, trying to get him to pedal. And, for a few brief moments, he pedaled on his own.


And there was great rejoicing.

Snacking preference

I don't usually buy snack cakey-type snacks for Buddy. Not because I necessarily have anything against artificial and processed forms of food, but primarily because I, lacking any type of self-control, would end up eating the entire box of snack cakes myself. Most likely in one sitting.

And also because he's such a light eater and because he can't have a regular multi-vitamin due to the extra doses of vitamin D and calcium they have (those with Williams syndrome can have problems with too much calcium in their bodies), I try to make sure that every calorie counts toward his overall health and well-being. (I did find this multi-vitamin that doesn't have vitamin D in it to give him.)

So, all that to say, Buddy doesn't get these types of snacks too often.

Apparently, however, he has somehow developed a taste for Christmas snack cakes. They were the snack du jour at preschool the other day, and he liked them so much that his teachers a.) wrote about it in his daily journal, and b.) sent him out to meet me at the end of the day with an empty box and a "Tell your mom how much you like these!" (Buddy dutifully said, "Like this!")

So, in the spirit of overindulging at Christmas, I saw the Christmas snack cakes while I was at the store today and threw a box in my basket for him (and maybe, perhaps, quite possibly also for me). After I got home and showed him what I'd bought, he downed two cakes with a glass of milk. Thanks, Little Debbie, who did not in any way provide compensation for this post, for all that trans-fat-laden high-fructose-corn-syrupy goodness!

Letter to the preschool teachers

This was the letter I wrote to Buddy's preschool teachers.

Dear Teachers,

We’re looking forward to having Buddy in your preschool class this year!

We wanted to let you know a few things about Buddy that make him unique. He was diagnosed with a rare genetic disorder called Williams syndrome, which can lead to learning and physical disabilities. If you’d like to learn more about this disorder, you can visit www.williams-syndrome.org or UnderstandingWilliamsSyndrome.blogspot.com.

As part of that disorder, Buddy faces some special challenges.

1.     His hearing tends to be more sensitive (called “hyperacusis”). This doesn’t mean he’s deaf or has hearing loss—instead, it means that sounds that might not bother normal people can bother him. You may see him put his hands over his ears frequently to block out noise he has difficulty tolerating. In some cases he may say no to let you know he doesn’t like a noise; other times he may cry. A few examples of noise that have bothered him in the past include small wind-up toys (that make a buzzing sound) and loud yelling by other children. We try not to make a big deal out of it or baby him too much and just tell him he’s ok.

2.     Many people with Williams syndrome have difficulty eating regular food. We’ve worked with Kieran quite a bit so that he eats a variety of textures; however, for some reason, he has difficulty eating in some public places. He may refuse to eat any snacks you offer him (although please do expect him to sit at the table while the others eat)—this doesn’t mean he isn’t feeling well. And I’m not concerned if he doesn’t eat at preschool—he’ll eat at home (he won’t starve J). He likes some crunchy foods (goldfish crackers, pretzels, etc.) but tends to avoid foods with a gummy texture. His low muscle tone also prevents him from being able to chew harder foods such as raw carrots.

3.     One interesting trait of those with Williams syndrome is that they tend to be overly friendly with everyone—even those they don’t know. They don’t have an innate fear of strangers that most people have. For example, Buddy will say hi to anyone he sees in the store. Obviously, though, this trait can also be a drawback and even a danger to him. While we want to allow him to be friendly with others, we’re still trying to figure out how to best teach him how to interact with others properly.  We want to encourage him to greet people with high-fives instead of hugs and to distinguish family/friends from strangers.

4.      Those with WS can also have low muscle tone, which makes motor skills more difficult. We want to encourage him to keep working on fine and gross motor skills, as well as oral-motor movements.

5.      And finally, visual-spatial areas can be challenging for those with WS. For example, drawing, handwriting, and puzzles may be difficult for him, so we want him to work hard on these areas.

Having said all of that, we want you to expect from Buddy what you expect from the other children in the class. He can learn and we expect him to do his best. We’re excited to see him grow and develop this year as you work with him in the classroom, and as we continue working with him at home. Please feel free to contact us with any questions or concerns. Thanks for serving the Lord in this way!

First day of preschool

Today was Buddy's first day of preschool (as if you couldn't tell by the title of the post).
In addition to giving them the goals we set for his IEP, I'd written a short note (Husband wouldn't let me write a long one, "You've said enough--you don't need to overwhelm them with information.") to the teachers about Buddy and the aspects of Williams syndrome that he deals with. I wanted them to be prepared for some of the behaviors unique to him (e.g., hands over his ears) but also wanted them to know that he can learn along with the other children and that we expect him to do his best.

From all accounts, it went well. His teacher called this evening to give me an update--he actually ate his snack, he covered his ears a few times (she said, "We just said, 'Thank you for reminding us that we're getting too loud.'"), he participated in all the activities, he especially liked the instruments they used during circle time, and in general, he seems like a happy kid (which he is). She was interested in teaching the other children empathy with his sensitive hearing, which I thought was a nice approach.

I asked him on the way home what he did at school and was pleasantly surprised when he answered, "Made a rabbit." He doesn't usually answer "what did you do today?" questions so I was thrilled that he was talking about his day. However, the craft I pulled out of his backpack was an igloo (this is letter I week). I suppose the cotton balls on the styrofoam plate could have been construed as "bunnyish" . . . .

Birthday present

One of Buddy's presents for his third birthday was a harmonica from Husband's parents. Husband was inspired by Garrison, a guy with WS whom we met at a picnic and who is amazing on the harmonica.



Buddy isn't quite there yet, but he's more interested in getting there than I thought he'd be.



It's been an amazing three years, and we love this little guy with all our hearts.

Setting Goals

Buddy turns three soon, which means he'll be leaving the First Steps program and transitioning into our area's preschool special education program.

On Thursday, we went to the first (of many) IEP (individualized education program) meetings. It went well, in my opinion--although I don't really have any other meetings under my belt by which to judge it. And since this was the first, I considered it more about me learning the ropes of these meetings. (As an interesting aside, when the service coordinator requested Buddy's medical records from the children's hospital, she received them on a CD because there were over 500 pages of records.)

The results of their testing a few weeks ago were in agreement with the results we got from Dr. Mervis's team in Louisville--he's average/low-average in most areas. We really are thrilled that he's doing so well.

I was in agreement with most of the goals for fine motor and language that they had written for him, and the one I disagreed with, they willingly changed. (They wanted him to learn his colors, which he already knows.) I also wanted them to add a few goals for gross motor skills, which they did.

The reason for writing these goals is so that his preschool teacher will know what to work on with him and so that we can work on those same things at home. When I talked with the teacher last week about enrolling him there, she and her aide both seemed to have a good background in special education and speech therapy, and she was planning on learning more about Williams syndrome so that she could be prepared.

I'm looking forward to getting him started and seeing how he does in the classroom (it's a small group with six other typically developing kids).