Tuesday, April 19, 2011


Jacob is special. We surround him with people who know that he is special. He is the center of attention. He is never ignored. We celebrate everything that he does. So I should not have been surprised when he went BERZERKO at a birthday party last weekend during the Star Wars themed yoga instruction. There were children younger than him, older than him, the same age as him, and he was the only child yelling "ME ME ME" and chasing after the instructor and walking all over the other childrens' floor mats. But I was surprised - pleasantly surprised to see him so engaged. When it was time to jump, he stomped around. When it was time to run, he squealed and turned in circles as the other children ran by him. But he was run over a few times and one little girl didn't like him on her floor mat so she pushed him off. He doesn't know that he is special in a disabled sense. Most people don't know, which brings me to a conversation I had with Jacob's Early Intervention service coordinator during our first transition meeting - Jacob's transition to the public school system.

Jacob has always been a paradox. No one would ever believe that the Jacob at the Star Wars birthday party had a left middle cerebral artery infarction, infantile spasms, or a left functional hemispherectomy. He has made significant neurodevelopmental progress, which did not happen by magic, but by blood, sweat, and tears (literally) and medication. One of my concerns about transition is how much "progress" will determine the frequency of Jacob's therapy once he turns 3 and begins attending the public schools. Jacob's progress also includes mechanisms by which he compensates for or mediates his disabilities. To me, this is more a measure of functionality rather than true ability. For example, he has begun to combine thoughts.

Jacob - Mommy
Me- Yes Jacob
Jacob - Jhuvoh (shovel)
Me - You want to shovel?
Jacob - Yah
Jacob - Mommy
Me- Yes Jacob
Jacob - Dig dig.
Me- You want to dig outside with your shovel?
Jacob- Yah. Me.
Me- Okay, when we get home.
Jacob - Mommy
Me - Yes Jacob
Jacob - Jhuvoh
Me- Okay Jacob. When we get home we'll go outside and play with your shovel.

This may be very similar to combining words but he still needs speech therapy. He still needs physical therapy and occupational therapy. He is special AND he is disabled.


  1. I hope it helps Jacob that Trevy has been blazing a trail before him. But no matter...there will still be those who CANNOT see the disability because of the growth. In a way...the rate of growth then becomes a disability. And just another exhausting opportunity to advocate and educate. More often than not, I have felt like I was hitting a brick wall. The number of times I have heard ravings over "how wonderful Trevor's progress is". A statement which should cause joy (and does) causes a gnawing my stomach. Because I know. I know it's one step closer to services...needed and deserved...to be withdrawn. Because the miracle eclipses the disability. We're already facing it. Trevor was only granted 30 mins a week of PT & OT. I chose to pour my energy into pursuing cognitive development and succeeded in gaining ST daily. In part because the ST see BOTH the miracle and the disability. But I have nothing but negative experience with the Gross & Fine Motor end. I wish I could say differently. But they have already recommended NO ESY OT/PT for Trevor. Which leaves me with a choice. Fight...advocate if you prefer. I'm not a fan of advocate...because the post "advocating" exhaustion leaves me feeling more like I've been to war & back. But I can choose to Fight or Just Do it Myself. Honestly, I'm not sure which is the better option. Sometimes I find myself thinking the latter...


    Clearly...I have LOTS to say on this topic.

    Including...get an advocate in the room with you. Although you probably have a better understanding of IEPs and such than I do.



  2. "the miracle eclipses the disability" - I'll have to get a t-shirt that says "Don't mess with my miracle"