Sunday, August 23, 2009

The First Word


The word came out clipped and short and as bright as a major chord on a well tuned guitar. 

It was my son's first repeatable word beyond Da and Ma and we all laughed when he said it twice and three times and beyond. It was a joy. He smiled and laughed at our delighted reaction. 

My son's speech has been delayed. It's been suggested to us that this is part of the normal course of affairs for kids with Cerebral Palsy; though no one has given us a concrete understanding of why this is the case. We had been (and are still worried) that there may be more of an issue with his speech than just a delay. But today gave us more hope. 

I remember waiting for my daughter's first word, wondering when she'd begin to tell us more about herself. I was excited as she started to grasp the language and repeat lines from familiar stories we'd read her. It was fun and she was a quick study. 

With my son it's different. Because the brain is so complex, and the impact of the stroke that affected him is so hard to measure, we're just not sure where his development challenges will come from. We watch each of his behavior changes closely. We discuss them exhaustively and try to determine what each might mean. Today, we did not need to discuss, we knew this was good. 

It will likely be a long road still. The New Jersey's Early Intervention program has assigned him a speech therapist who will be working with us in the near future. We may, depending on insurance, try to do more. We also practice each technique we were given at his formal speech evaluation for Early Intervention. There is a lot to do. 

But for today we can at least be sure that some of the work has paid off. Our son has made his first step into the language. Our boy has the word.  


Sarah said...

I'm loving your blog. Just stumbled across it from the NYT. My son had heart defects and hypotonia (low muscle tone). He also had developmental delays and your family seems a lot like ours (loving older sister, navigating therapies and insurance, wonderful grandma.) I'm looking forward to reading more. I'd also suggest looking into hippotherapy (riding horses.) Strangely enough, our son's speech blossomed after starting this. And the state's Babies Can't Wait Program covered it.

Have a great day with your sweet little boy.

humbledmum said...

Hi David. My son has mild CP too, with dysarthria (a speech disorder). Does he have oral motor issues too? My son's oral motor weakness impacted his speech. At 2yrs old when we stared speech therapy, he said zero words. He's now 3yrs 8mths & probably has over 100 words (I lost count several months ago)

Yes, there's a lot to do. But I'm pretty sure you'll reap the benefits from all that therapy work. Learn as much as you can from the therapists & apply it daily with your son at home. Be encouraged that it'll be all worth it.

I've recently started a blog too, to document my son's progress & stuff I do with him. I'm glad to have come across your blog. I do enjoy reading it & have added myself as a follower. If you have time, do drop by. This is a link to a post on his last speech therapy session:

David Sexton said...

Hi Sarah,
Thanks. I'm glad to hear about the horse riding. I'll ask our coordinator from NJ Early Intervention if they will cover it.

Thank you for the nice feedback too. It's the best feeling not to feel like we're alone.

Take care,

David Sexton said...

Hi humbledmum,
We're not sure if his speech is more than delayed yet - the doctors and state people haven't made any determination. We're staying vigilant for now. I'm not sure when we'll know one way or the other. I will ask the neurologist on our next visit now though.

Thank you also for the link to your site. I will stop by and visit.

Take care,

Eric Siegel said...

Hello, all:

We have a daughter, Lili, with CP... she walks with a walker. She is an identical twin, and her sister Nica does not have CP. So we (and she)have had a built in ruler to measure every delay and difference. Frankly, it sucked. It was a huge amount of anxiety, and we coped the best we could.

Lili is now 17, she is applying to some of the best colleges around, she is determined to be a lawyer and followed the sotomayor hearings suspiciously closely. I suspect she is rehearsing in her mind when she will be the first disabled Supreme Court judge, or maybe I am just projecting.

She has some motor speech issues, but generally speaks well (and a lot), and is an amazingly well spoken kid.

So...hang in there, always glad to talk if you'd like to get in touch.

Nice blog


David Sexton said...

Thanks Eric,
Wow! You must be really proud of your kids - that's great to hear. Best of luck with the college admissions process. That's a really exciting time.

Thanks for the kind words too. I'm sure my little guy will get there.

Take Care,