DON’T STOP ME NOW
January 29, 2015

We had Cole’s IEP today. The IEP is our annual review of educational goals that we, together with Cole’s team (which includes speech therapist, occupational therapist, physical therapist, teachers and school administration), set each year. It’s a bit more involved than that but in general its purpose is to ensure that the necessary services are in place to help facilitate his access to the curriculum and support his needs. All in all today went well and the process was collaborative and informative, with what feel like achievable goals that all, in one way or another, tie to improving and expanding his communication skills, which we feel is vital to his success in school, and in life.

I left the IEP feeling positive and as I drove to work I continued to think about the morning. Despite the process and conclusion of the IEP being positive, it also strangely serves as a reality check. In order for it to be successful and appropriate, we have to accept that some goals from the previous year were not met and that even though we believe that Cole could have, should have achieved them, he did not. There are so many factors that play into his success. Some he can control and some that are out of his hands.

The effort that is required of him to construct even a small sentence or find specific fields in his Tobii (the eye gaze voice output device he uses to “talk”) is considerable and if he’s distracted by a friend or sound or himself, starting over makes the process that much harder and after time, that much less interesting to him.

Motivation seemed to be a running theme. Like most kids, when he has an interest or curiosity he can be quite adept at finding the word or words to communicate. When he’s relaxed and no one is paying too much attention to him, he can quickly find things on his Tobii, or can say actual words. There’s no stress or pressing need. However, when pushed to a task or asked to find specific words or phrases on Tobii, he seems to have trouble focusing, or worse, doesn’t always want to, and therefore does not try.

In addition to highlighting his strengths, the IEP shines light on his weaknesses and brings some of his limitations to the forefront. In our family, we tend to lead with hope. We have instilled the belief that he can do anything he wants to do as long as he tries, or as long as we can figure out a way that works for him. But sometimes we’re reminded that despite our best efforts, despite his best efforts, that may not always be his truth. It’s a hard thing to have to face and accept the realities of a life so young. It’s not always easy to recognize that as amazing as Cole is, there are going to be limits. Limits we intend to stretch and expand as much as possible to ensure that his life is rich and full, and that he’s the best Cole he can be, but limits nonetheless.

That’s when the tears flow…

LET’S DANCE
January 16, 2015

Tonight is Cole’s middle school Winter Formal Dance. It will be held the school auditorium from 6-9pm. Cole’s going, It took him a while to decide whether or not he really wanted to but ultimately he decided he wanted to go.

He loves to dance, but in truth, he never really has a great time at these school dances. I’m not sure why. Probably the poor acoustics in the in auditorium making the music unbearably loud and the general chaotic nature of middle school dances. He’s not one for big loud or crowd.

However, I suspect that the lure lies, in no small part, in the desire not to miss out. Kids have been talking about it for the past couple of weeks. Everyone’s asking everyone if they’re going…trying to figure out if the cool kids will be there.

All of the kids in our little friend/family tribe have been wavering as to whether they’d attend or not, and slowly as the day approached, each decided to go in the end. Funny how they’ve all come to the same conclusion. No one wants to be the one who missed out.

Missing out on a school dance is a big deal when you’re thirteen. Even if you don’t really want to go, you could be missing out on the chance to witness something everyone will be talking about or to dance next to or with that cute guy or girl in your class, or to just have fun hanging out with your friends on the sidelines. Being the lone kid out on Monday morning when everyone is rehashing the dance feels terrible.

So off he’ll go in his cool dotted Crew Cuts button up with a contrasting striped tie (it is a formal)…ready to dance and have a memorable time with friends. I’ll probably be sipping wine somewhere nearby with the other parents as we wait for the kids to text us to come pick them up…kind of wishing I was dancing too…