Brennan's Evaluation and Crawling Revisited

In a comment about Brennan's evaluation, Jessica from Ten Squares Three Squiggles said that her son's evaluation also included age equivalents, which would give a correlating age for each of the areas tested. Prior to Brennan's evaluation, I told his EI coordinator that I would prefer to not have age equivalents listed. I agree with Jessica's comment that an evaluation for someone (especially someone who automatically qualifies for services due to a diagnosis) should state what the child is currently able to do and their goals for the coming year should be. An approach that focuses on the positive, what our kids can do and what they should be working on next. Those are the important and relevant pieces of information.

And about getting ready to learn to crawl, Karen from The Bryant Family News said "watch what you wish for" because "once they go, there is no stopping them." I admit to having a little bit of mommy-guilt about this because I'm actually not that anxious for him to be mobile. I know what comes with a mobile 1 year old.....baby-proofing the house (again!), worrying if the older kids left a door open, having to keep an eye on the little one ALL OF THE TIME. Ugh, it makes me tired just thinking about it. Of course I work with him, I do what his physical therapists suggests, do all that I can to help him because I know it's important. But secretly (or not so secretly anymore) I'm a little bit happy that he's taking his time. Everyone involved believes he WILL learn to crawl and that he WILL learn to walk and I'll be thrilled to pieces for him when he actually does. But for now, I'm enjoying having one child that will happily stay in one place. One less person to keep an eye on at parties, at the playground, at the beach. I'm pretty sure that this will be the last summer that he'll sit so contently - so I'm going to enjoy every minute.

Our First Trip to the Special Olympics

After attending a Special Olympics fundraiser at a friend's house a couple of months ago, we were invited to attend the summer games and be part of the "Be a Fan" tour. So, Saturday morning, Eric, the kids and I headed up to Harvard University for the Special Olympics Massachusetts Summer Games. It was an awesome experience.

We were with about 15 other people on the the tour. I had assumed the other "fans" would also be families of children with special needs, but they weren't. They were all people who just want to be a part of this very special organization. Maybe some had seen an ad like this one:



Or maybe they had a personal connection. One of the men on the tour said he was there because he wanted to encourage his kids (ages, 10, 10 and 13) to volunteer and thought it would be a great thing to do as a family. He told me he chose Special Olympics because he had a friend 20 some years ago with a sister with Down syndrome. He said the friend and his sister had an incredibly close relationship and had both left a lasting impression on him.

During the tour, we were able to watch athletes participate in swimming, gymnastics, track and field, tennis and volleyball. There were glowing smiles, enthusiastic thumbs up and high fives everywhere. We were also given a bit of history about the Special Olympics and also specifics about Special Olympics Massachusetts. There were 2,129 athletes participating in Saturday's games. I didn't hear the exact number of volunteers, but was impressed that a single Boston-based company had sent 400 volunteers. Wow!

For those of you interested, there was a great article in Sports Illustrated a few months ago that told the history of the Special Olympics, which was started by Eunice Shriver in 1968. What an amazing organization she had the vision to create. I can barely begin to fully comprehend the positive impact that the Special Olympics has had on millions of lives...not only of those that compete in the games, but also spectators and volunteers. I felt honored to be able to spend a day cheering for the Special Olympics athletes and look forward to many more such days...especially when I can be there cheering for Brennan.

And just for fun, here's my favorite commercial from the 2008 Summer Olympics in Beijing:

Brennan's 12 Month Evaluation

A couple of months ago, Brennan had his 12 month evaluation from our Early Intervention provider. They are required to evaluate him every 12 months even though he automatically qualifies for services due to his diagnosis. During the evaluation they "test" him in various areas to see what he can and can not do. Truthfully, the assessment was somewhat uncomfortable for me. I've never had one of my kids asked over and over to do things they aren't yet able to do. And to do that to a baby seemed just wrong. At one point, they put a ball on his tray, put one cup upside down over the ball, then put another cup upside down on the tray. They moved the cups around and wanted Brennan to guess which cup had the ball under it. At 12 months, I knew this was way beyond his comprehension. It felt a bit like asking my 6 year old to do calculus. The thought that he will be tested in this manner on a regular basis is somewhat unsettling to me. But, it seems there's no way around it. Having done it from such a young age, maybe Brennan won't think much of it (a girl can hope, right?).

Anyway, back to the results. If a child scores 77 or below on any of the areas, they will be eligible for services. Brennan's scores were as follow:
Adaptive - 75
Personal/Social - 90
Communication - 69
Motor - 66
Cognitive - 106

While Brennan's EI coordinator was discussing the results with me, she would give me this sad look when discussing the areas where he scored below 77 and would give me a quick smile with the ones where he scored above 77. Honestly, I didn't have feelings of happiness or sadness with his results. He's happy and he's making progress....at his own pace. Whether he scores a 15 or 115, I know he's doing his best and I am so proud of him.

The "Stander"

As I've mentioned, Brennan really doesn't like bearing weight on his legs. He will either lift his legs up or push his bottom toward the ground whenever we try to put him in a standing position. And putting him on hands and knees is impossible - he uses every Houdini move possible to get himself and keep himself out of this position. So, last week his physical therapist brought this lovely wooden contraption (which she calls "the stander") for Brennan to use.

He'll stand in it happily for about 3.2 seconds...then the squirming begins. We're definitely going to have to come up with other ways to convince Brennan that crawling and standing really are worth learning to do.

Brennan's First Boating Trip

Last weekend, we took Brennan out on the boat for the first time and went over to one of the Harbor Islands (pictured above). He wasn't sure about it at first - mainly due to the really uncomfortable life vest he has to wear - but he got used to it and ended up really enjoying the trip. I picture many boating, lobstering and fishing trips in his future!

Delivering the Diagnosis

When the doctors were explaining Down syndrome to us in the days after Brennan's birth, every bit of information they gave us was negative. Really, every bit of it. No wonder I was feeling such doom and gloom. Then I met and read stories from parents of children with Down syndrome and the stories from them were overwhelmingly positive. I try to imagine how differently and more optimistic I would have felt from the beginning if I had been given both "medical" and "real world" information in those first days. If a doctor and a parent could deliver a diagnosis - what a difference that would make!

Down Syndrome and Divorce

One of the many "fun facts" that the doctors shared with us upon telling us that Brennan had Down syndrome was that parents of kids with special needs have a higher divorce rate than the general public. I didn't put much faith or thought into this statement - but Eric was really bothered by it. So, he did his own research and found that parents of kids with Down syndrome actually have a lower divorce rate than the general public. Interesting, isn't it?