You never know what you're gonna get

This morning we went for another visit with the OT we visited last week.

The thing about therapists is that you never know what kind you'll get. Some, like the OT we had in First Steps, are great. Very proactive in working with the child, very insistent on the child doing what needs to be done, and very good about suggesting ways for us to work with him. Others, like the DT we had in First Steps, are less insistent about getting the child to work and not as good about getting the family involved.

I was concerned that our new OT would be like the latter. So I was pleasantly surprised with Cindy this morning. She was really interested in finding out how he was doing and in working with him and getting him to stay on task. And I've learned that therapy is as much about getting the child help as it is about our learning what we need to be doing to help him -- a philosophy with which she agreed. She was very adamant that therapy is much more effective when the parent is involved the rest of the week.

So, we're off to another good OT start.

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.

EEG Day

Last month, we went to our pediatrician to get a referral to the neurology clinic at the children's hospital for an EEG because I suspect Kieran may be having absence seizures. (Wow, that sentence has a lot of prepositions.)

Today was that EEG. I've been talking to Kieran about what would happen, hoping to prepare him so that he wouldn't freak out when the technicians started putting the electrodes on his head.

"We're going to the doctor in a few days and they'll put some things in your hair. But it won't hurt. It will be fun! And you'll get to watch videos with daddy! It will be fun!"

He seemed to believe me. When we got to the hospital, he told everyone who would listen, "It doesn't hurt."

And then, when we got to the neurology area, he told the lady, "It doesn't hurt." And she said, "You're right! It doesn't hurt! We'll just put little stickers on your head." Which I thought was a great way to put it, so I started telling him, "Ooh stickers! It will be fun to have stickers on your head! Stickers don't hurt! Yay for stickers on your head!"

And then we got to the EEG room. And the lady explained what they would do. And then, as soon as they laid him on the table so they could start stickering him up, he began cry uncontrollably. Before they started touching him.

And he continued to cry throughout the stickering process. But once Seth was able to hold him and he was able to watch Elmo's Potty Time on the TV, he calmed down for the most part, with a few occasional bursts of crying just to remind us that he didn't like having to do this.

 

And we all made it through the dreaded EEG.

 

We kept him up two hours past his bedtime last night and got him up earlier this morning so that he would be tired for the EEG (I don't think it worked), so he was pretty tuckered out on the way home.

 

We'll find out the results in a few weeks.

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.

Q-week at school

This week's letter at school was Q. What would you send with your child to show-and-tell for Q week?

It was actually a no-brainer for us. As a ramification of Williams syndrome, Buddy gets to deal with excessive ear wax (or rather, Husband, who in charge of grooming the boys, gets to deal with the ear wax). I know -- just what you wanted to read about. Ear wax. There, I said it again.

So he's well aquainted with Q-tips, which happen to begin with q. Thusly, his show-and-tell item for this week was a Q-tip.

Why I'm Pro-Life

It was cold and rainy outside when we returned from lunching with my friend. I always enjoy having scintillating, adult conversation in the middle of a day filled with diaper changes, Sesame Street, and choo-choo trains.

One of the topics that came up in our conversation was an argument she'd recently heard by someone advocating for the right to life of unborn babies with disabilities. It's an argument I've heard, as well.

A few months ago, a fellow mom of a child with WS was shocked and appalled when she learned another lady had aborted (or, more accurately, killed) her unborn child after finding out the baby had Williams syndrome. Our children are such blessings, she argued, they give so much to the world, so why should they be denied a chance at life? If only this mother had known how special and sweet children with Williams syndrome were, she wouldn't have taken the life of her baby.

It's true that Buddy is a blessing to our family. His quick smile, deep belly laugh, enjoyment in pronouncing words like liposuction and avocado, desire to say "hi" to anyone he meets, and saying "I love you. Hug" after a discipline session make my heart happy. I can't imagine life without him.

But Buddy isn't why I'm pro-life. And, although I agree that it's important for people see the positives when raising a child with disabilities, this isn't the line of reasoning I would use when arguing against abortion.

Because what happens when someone like Hitler comes along and decides that children with disabilities aren't blessings but are instead a drain on society and should be eliminated? Or what happens when some takes a look at the life of this little boy and says, "Sure, Tripp was a blessing to his family, but I couldn't stand watching my child go through so much pain and suffering so why should I bring him into the world in the first place"?

Then it becomes a matter of opinion--my opinion that children are a blessing and a differing opinion that says the opposite. Which opinion is right?

No, the argument for giving children with disabilities the right to live is--must be--much broader and bigger than the joy Buddy brings to us and the world.

I am pro-life because this is what God teaches in His Word, the Bible.

I am pro-life because God is the Creator (Genesis 1) and the Giver of life and I am not. I have no right to decide which children live and which die.

I am pro-life because God has created all humans in His image (Genesis 1; Psalm 139:13-14). I have no right to decide which humans have more of that image and are therefore more entitled to live the life God has given them.

I am pro-life because God has decreed that murder (the intentional taking of an "innocent" human life) is wrong (Genesis 9:5-6; Exodus 20:13). Because human life begins at the moment of conception, I have no right to murder a baby--either one growing in the womb or one that continues to grow outside of it--no matter if the child is healthy or has numerous physical and mental problems.
This little boy has it right. All people are image-bearers of God and deserve the right to live the life God created them to live. And that is why I'm pro-life.

Absence seizures

At a doctor visit, I asked the doctor about something I've noticed lately with Buddy. Every so often, sometimes several times during a day, he'll space out for a few seconds--he stares blankly and I can't get his attention. And then, after the few seconds pass, he's back to normal, as if nothing happened. So, I asked the doctor if he thought Buddy may be having absence seizures. And the doctor said the only way to tell was to have an EEG done, so he referred us to the neurology clinic at our local children's hospital.

(Funny story: While at the doctor's office, a tall, slightly rotund man with frizzy red hair and facial hair was checking in behind us. Buddy pointed to the guy and said, "Mr. Noodle!" Since my back was to the guy, I said, "What? No . . . [turning around and seeing the guy], ohhhhhhh, Mr. Noodle. Shhhhh!" And then I laughed to myself, with my back to the guy. He really did look kind of like Mr. Noodle.)

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).