That Child

So, you know how at any event showcasing young children, there's always that one child who can't be corralled, who isn't paying attention, who isn't participating nicely like the rest of the children?

Yes, well, that one is my child.

The other night, we went to a "graduation" party for Buddy's preschool class. It was mainly just the kids singing a few songs, saying the months and seasons of the year, going through the alphabet--you know, pre-K stuff. Most of which Buddy knows.

But he wasn't interested in participating. At all. You'll notice he's the only one not wearing a hat and not standing in line with the other kids.

He did, however, receive the "Best Hugger" award, which he then proceeded to demonstrate by giving out some more of his hugs. Can you count how many time he hugs someone in this two-minute clip (two of the people he didn't even know)? And can you see how uninterested he is in the whole thing?

 

(Have I mentioned that over-friendliness is byproduct of Williams syndrome? I'm really looking forward to the session on "Distinguishing Between Friends and Strangers" at the WS national conference we're attending in July . . . .)

At any rate, I really appreciate the patience and the genuine interest and caring his teachers have shown toward him this year. Mrs. Karla's twenty years of experience in working with kids and those with special needs have been invaluable in helping him--he definitely wouldn't be as far along as he is without the help and support he received through her. I'm so thankful the Lord let us to her little preschool, and I'm looking forward to having her continue to teach Buddy over the next few years.

Writing a letter

During the past few months, Buddy has made some big strides -- learning to ride his tricycle, learning to use the potty, learning to put words together in longer sentences. We've also been working with him on writing his name, as have his preschool teachers.

I've been doing a lot of hand-over-hand with him because his fine motor abilities are still pretty weak and drawing isn't a strength in those with WS. They tend to have visual-spatial difficulties (difficulty in recreating complex shapes -- for example, when drawing a house, they may draw a square in one place, the triangle for the roof in another spot on the page, and the rectangle for the door in still another spot on the page) which makes drawing difficult, as well.

We try to have a daily time where we draw and write on the white board my parents got him for Christmas. He likes using that more than coloring in coloring books or drawing on paper. His current favorite thing to draw is a "mixer" -- he's fascinated by KitchenAid mixers and likes to have us help him draw them. Writing his name is a necessary evil, in his eyes. He's not really into writting letters.

So I was understandably thrilled when he climbed on the chair this afternoon, grabbed his marker, and said, "Let's make a K." And then proceeded to write something -- on his own -- that actually resembled a K. He continues to surprise and encourage me.

And the cute vest that I ordered for him arrived today--now I just need to make some bean (or rice) bags to put in the pockets to turn it into a "weighted" vest.

Success

We put Buddy to bed tonight after having the first accident-free potty-training day. And there was great rejoicing.

"Participate in toileting routine" was one of his IEP goals for this year so his preschool teachers have been working with him, as well, over the past few months. I'm so thankful for Mrs. Karla who said about two weeks ago, "You know, we wouldn't have a problem if you decided to send him in underpants--we've dealt with this for years." I really didn't think it would go well or quickly but decided to listen to her words of wisdom and just do it. One week later and here we are.

 

Rest assured I'm under no delusions that there will never be another accident, and night-training is another animal entirely. But I'm so proud of our little guy, who I guess isn't so little any more.

Brushing

I mentioned last week that I'd noticed Buddy was having trouble concentrating and paying attention during circle time at his preschool. After reading the post, my mom (a school teacher) asked some of her fellow teachers for ideas to help him.

The OT at her school suggested getting him a weighted vest for him to wear during the times he needs to concentrate. When I mentioned it to our OT, she suggested purchasing an inexpensive fishing vest and filling the pockets with bean (or rice) bags. So I checked on ebay, found a cute one I think might work, and ordered it. I'm hoping it will be here within the next day or two.

When I mentioned the weighted vest idea to Buddy's preschool teacher, she readily agreed that it would be helpful for him (she's taught children with special needs for 20 years) and suggested that a "wiggle disc" might help, too. So, I purchased two of those (one for school and one for home), and they arrived today. We'll see how he likes them.

This morning, our OT mentioned that she had another technique that she's used in the past with other children: "therapeutic brushing." At the WS conference we attended in 2010, I heard several of the lecturers mention brushing but since Buddy doesn't really have too many sensory issues (which is what the brushing is supposed to treat), I hadn't pursued it any further.

Our OT said that brushing is also good for developing focus and concentration. So she gave me a brush and showed me what to do.

He didn't seem to mind it -- he likes having his back scratched. I'm supposed to do it 3-4 times a day for two weeks and see if we notice any difference. Now I'm wondering, however, if I should hold off on using the vest and the wiggle disk so that we don't skew the results of this "experiment."

Bubble wrap as OT

Buddy's preschool teacher mentioned a few days ago that she thought the bubble wrap the kids had been doing during sensory time was helping to strengthen Buddy's fingers. That's one of the reasons I'm glad we have him in preschool--the teacher has been great about working with him in so many areas and with so many tools that I wouldn't think of on my own.

When she mentioned the bubble wrap, I immediately began trying to remember if we had bubble wrap anywhere at home that he could play with. We didn't.

Today, the mail lady brought us a package with the contents wrapped in "bubble pops" (as Buddy calls it). And he knew just what to do with it.

Is there any irony to the fact that the bubble wrap enclosed a book I'd ordered a few days ago about disabilities?

Party Time

February 13 was the Valentine's Day party at Buddy's preschool (he only goes Monday, Wednesday, and Friday).

Last week, in preparation for the party, we (and by "we" I mainly mean me) filled out the V-day Elmo cards I'd bought and took them in so he could "mail" them to his friends.

Today, I (and Cubby) stayed with him since they'd asked for volunteers to help the kids read the cards and I had volunteered. It was enlightening to watch how he did at the various activities.

I've always thought that his attention span was comparable to others his age, but I got a healty dose of reality as I watched him fidget throughout circle time and need to have constant reminders by his teacher to sit on his pockets, to sit up, to pay attention -- all while the other boys and girls were docilely doing what they were supposed to be doing. Is there something we should or could do with him to increase his attention span in a classroom situation? I'll have to look into it.

At any rate, the party was fun and he got to decorate a huge heart-shaped cookie. Somehow, Buddydidn't inherit my sweet tooth, so his cookie went relatively untouched . . . until we got home, that is, when my sweet tooth took over and I, uh, "took care of" the cookie for him.

Another try at OT

Delays in fine motor skills are common in those with Williams syndrome. This involves actions such as handwriting, drawing, buttoning, self-feeding, and dressing. So the early intervention services usually include occupational therapy.

Buddy had an OT from the time of his diagnosis (August, 2009) through last May, when our OT left the First Steps program. Sadly, she was the only OT in our area, so we were left without one through the remainder of our time with First Steps. I've come to realize the value of the various therapies he's been involved in and have been frustrated that we've been without an OT for almost a year. Although we definitely work with him on these areas, the OT was helpful in showing us specific activities and actions we can do to help him master the skills he needs to succeed in life.

To be honest, I've felt like I've been letting him down by not getting him the help he needs. And my mind automatically looks toward the future -- how much farther behind will he be in five years because I'm not getting him the help he needs now?

When he transitioned into the the special education division of our school system, he automatically qualified for speech therapy. And we've been continuing that once a week. But for some reason, his service coordinator won't sign him up for OT or even do an evaluation on him to find out if he needs OT (which he still does). I'm not sure why. I've asked about it but keep getting told that it's not possible.

So, even though his preschool teachers have been doing a good job of working with him on the OT goals in his IEP, I've still wanted him (and us) to work with an actual OT. After pursuing a few options that didn't work out, I finally called our local hospital to find out if they offered pediatric OT and was so happy to hear they did. So I signed him up for an evaluation.

The OT confirmed that he's delayed in his fine motor skills and said she was available to start working with him next week. And there was great rejoicing on my part. Here's hoping she's a good OT who will push him (and us) to do what needs to be done.

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.

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" . . . .

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).

Evaluation Day, part two

This morning, we got up bright and early, piled everyone in the car, and headed down the road to meet with Dr. Mervis and her team for round two.

Today, Buddy spent some time in a play session with one of the researchers, in a play session with me, at a Baby Think session, and in a phonological evaluation with another researcher. And I got to have my psyche evaluated about how stressful it is to have a child with special needs. Husband spent his time taking care of one or the other of the boys.

At the end of it all, Dr. Mervis reviewed all the data and then called Husband and me into her office to the discuss the results. She said it was all good news.

According to their calculations, he's "average or low average" in every area except fine motor--meaning that in his expressive (the way he talks) and receptive (what he understands) language, he's average. In his cognitive abilities, he's average. And in fine motor areas, he's delayed. And, she said, compared to other children with Williams syndrome, he's above average.

Wow.

She said that if we were to put him in a preschool with typically developing children, "he would not be the lowest in the classroom." And that we were to make sure his teachers know that he has Williams syndrome, but that he can do what is expected of him and that they should expect him to do just that.

And we were encouraged to keep doing what we're doing--enrolling him in therapies (especially in occupational therapy for fine motor skills), reading to him, finding ways to develop those fine motor areas (and looking for alternatives to coloring since he's uninterested in that), and just, in general, enjoying having him as our son.

So, how much stock do we put into charts, evaluations, and the like? I'm not really sure. One month, one evaluation says one thing, the next month another (albeit, more extensive) assessment says something different. Dr. Mervis's comments definitely made our hearts glad. But, he is who is, and it's up to us to continue to encourage him, teach him, and most importantly, through the working of the Holy Spirit, lead him to a personal relationship with Jesus Christ--something no amount of bar graphs and filled-in-bubbles can measure.

"Ate great today"

A common frustration among most parents of children with Williams syndrome is the child's lack of eating. I'm not talking about a few days here or there when they won't eat, or when they turn up their nose at a certain food offering -- I'm talking about not eating for weeks on end. Some don't eat because they have texture issues or low enough muscle tone that they can't chew food properly and need to be fed via g-tube; others just simply don't eat for unknown reasons.

Kieran falls into the latter category. I never know if a day will be a good eating day (meaning he ate something for breakfast, lunch, and dinner) or a bad eating day (meaning he ate mostly nothing at any meal). Although I try to cram as many calories and good nutrition into him via drinks (kefir, Carnation instant breakfast, fruit juices) as I can, my mantra has become, "Well, we'll try again tomorrow."

He doesn't often eat the snack and lunch he's served at daycare, and apparently the daycare teachers have begun to feel my pain. On Friday, they were excited that he actually ate something for lunch and wrote it into their daily report for him.

He didn't eat the cupcake they gave him for morning snack (the mother of one of the girls in his class brought them in to celebrate her birthday), but he did actually eat the chicken tenders and fries for lunch. And there was great rejoicing -- by his daycare teachers