J-Bear and Me

learning to navigate the world, j-bear style

Diagnosiversaries

Yeah that’s not even a word, I know. Bear with me. I know I ask that a lot but I hope the result is generally worth doing so.

From April of last year until J’s birthday this past June we were a part of our local Early Intervention system. These folks were by and large amazing. I think of all the professionals I met through them I only had one bad experience. That’s a pretty awesome track record. J’s coordinator, OT and his group leader are the ones who encouraged me to take J to see a pediatric neurologist to see if what they were seeing was what they believed they were seeing.

J’s neurologist at Floating Hospital for Children in Boston is wonderful. I remember being so uncertain what that initial appointment would entail. It was nothing compared to what my brain feared. I thought it would be long, scary and invasive. It was calm, simple and direct without being intrusive to J. The neurologist did a brief physical examination and more importantly he spoke to those who knew J best as well as observed J’s behavior during the appointment. The world at large doesn’t always see it but J has a few distinctive behaviors that point professionals to thinking he has autism. He did them all in the room that day with the neurologist and said doctor came to his conclusion quickly.

He was diagnosed. It was real, autism was officially part of the family and the spectre in our midst was given a name.

There is a deep sense of relief that came with this. There’s a lot of things surrounding J’s diagnoses that I am sad about yet it is not that he actually carries them that necessarily causes it. The relief washed over me that now we could get help. Resources would be available to us that were not prior to that word being attached to his medical record. There was hope.

Hope came in the form of a young lady from Building Blocks (an ABA provider) who got J in every way you could ever hope a teacher or therapist could understand your child. She, along with his Early Intervention team and later an additional OT, a speech therapist and another ABA provider, set J on the road to translating the awesome little person he is into a language everyone around him can share. They brought words into his life. They brought signs. They brought relief for his sensory processing troubles. They brought laughter and joy and confidence. They not only taught him to be the best he could be but taught me what tools were out there to be his mom in the way he needs me to be.

I might be a lucky one. I have led a life that has left me with strange expectations of the world at large. While I was pregnant with J and when J was born, my greatest hope for him was a happy and peaceful life. It did not matter if that meant he became an astronaut, a professional athlete, an artist or a garbage man… His joy and peace were and are what I prize most as they are what I feel to be the greatest things we as individuals can achieve. Autism unsettled that hope but it did not destroy it. The diagnoses J has received do not disrupt his path but instead delineate it. He will travel forward just not in the way anyone may have initially planned and that’s okay. He’s still going forward.

If any of his team are reading this, I have a note for you: Your funny boy is still funny. I handed him something earlier and he thanked me in Chinese. He loved his summer school and learned the routine quickly. He’s working hard to understand the words “stop” and “no”, occasionally even using “no” appropriately in various situations. He’s growing a little more each day and it’s all thanks to the amazing foundation you laid for his progress. There will never be enough words to thank you all for the precious gifts you each gave him. The kids you work with are so very lucky to know you all!

3 Comments

  1. anne rossetti (mary's sister)

    August 9, 2013 at 7:25 pm

    This beautiful post moved me to tears; it speaks so much to so many people in many situations. Keep posting; I beleive its what you were meant to do.

  2. This is so great to hear! Thank you and my little Einstein. You’re the best and as always, your posts are a true pleasure to read.

    • Catherine! We miss you so much!! You would love the Chinese, you really would. His listening is improving so much, day by day. We have a lot to work on but hey, we’ll take what steps forward we can.

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