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.)