J-Bear and Me

learning to navigate the world, j-bear style

Tag: early intervention

As Simple As A Cat

Hunker down, I’m about to tell a story. By now all should know I am physically incapable of being short-winded on the internets.

About a year ago we were coming up on J’s first neurologist appointment. This was going to be the turning point in J’s care. This would be when he was given an initial diagnosis of autism. It was his Early Intervention coordinator along with his EI Occupational Therapist and his group leader who all saw the signs. They saw the struggles I saw and knew what they meant. These women were amazing to us, guiding us along the start of what will be a lifelong journey.

One appointment I was chatting with his coordinator about his attachment to his pacifier. A particularly horrible doctor in J’s primary care doc’s practice had been vile to me about it. Now, children tend to have self soothing things. Some have pacifiers, some have their thumbs, some have who knows what. J at this point had zero attachments to any item or ritual outside that pacifier. Two years of age is starting to get long in the tooth to keep using one but, it was his ‘thing’ and still is his thing. He accepted no other comfort, so in our discussions we noted that factor and left the pacifier alone with the thought that maybe seeing if he’d grow attached to a lovey would help him wean off it.

Now, J has roughly half a million stuffed animals. That’s what it feels like anyway. They’re everywhere in our house. There’s a mountain of them in the living room and another in his bedroom and a small heap where he sleeps… We have stuffed animals covered. Take your pick, we likely have it. I was only in my first trimester when I bought him his first stuffies, three beautiful JellyCat critters, and the collection just exploded from there. He liked some of them, for they were soft and some had been by his side since birth, but he wasn’t truly attached to them. I was of the mind that he never would get attached to them.

Then he found her, the stuffie of his dreams.

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Image by Family Tree Photography

Miss Kitty came to us as a gift. She represented a fluffy member of the family who departed this world not too long ago, a fat black and white cat named Diesel. Despite the masculine name she was indeed a female cat and she purred like a poorly tuned up Mack truck. She had a mean streak if she didn’t like you but was tolerant and even hilarious if she did. In her old age she somehow always managed to be gentle and tolerant of J who did not understand that she was going blind and deaf. She allowed his pats and attention and generally made him giddy every time they met. One day J just took up with the fat stuffed animal that looked so like her and I’ll tell you… He hasn’t looked back.

This cat has been puked on, peed on, thrown in multiple water tables, dropped in puddles, traipsed across state lines, dragged through surgery, thrown through the washing machine many times… This cat has gone everywhere she possibly could with J. I even sought out duplicates from the same company but every time J rejects them as Inferior Cats! Miss Kitty and only Miss Kitty will do.

Now, sometimes, J will accept his little beanie Kai-Lan doll or one of his stuffed sheep, or his stuffed dog, or his monkey… but it’s always Miss Kitty he comes back to and Miss Kitty he truly misses when she is gone. She has sat on Santa’s lap with him while he screamed (Santa’s scary) and comes with us nigh everywhere like my errant other child that needs watching.

To finish this post, I’ll leave you with some pictures of Miss Kitty making Poor Life Choices:

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Miss Kitty and the Mardi Gras Beads

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No, I still don’t know what happened here.

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!

One Year

One year ago about this time, I called early intervention to ask for an evaluation for my then 19 month old son. The evaluation was done at 20 months and services began at 21-22 months…

The changes are amazing.

A year ago, I had a sweet little boy who was so tucked into his own world it was frequently frustrating to try and do anything with him. He would engage people on a very passing level, if he did at all, and what few words he had ever attempted would disappear as fast as they came. He did not mimic anything done around him or with him, he never showed interest in other children unless exposed to them for days at a time…

I was so very scared I was just losing my mind. His doctor, despite all her best intentions, thought nothing was truly wrong. He was just taking his time coming around to speaking. The other details that I only realized in hindsight didn’t occur to her to ask about. I was so certain that the evaluation from early intervention was going to say the same thing… When they came back with serious communication and social deficiencies/delays I was actually shocked…

… And grateful.

Today, J-bear mimics. He uses signs. He speaks and repeats, not in the most effective of manners but he’s trying. He loves to see those who are familiar to him and rewards them with brilliant smiles and greetings when he sees them, offering “bye-bye” when we leave their presence. He on his own learned to say “dan you”/thank you when he is helped or when you give him something. 

His eye contact is hit or miss. He gets extremely overwhelmed in large crowds, bright places or busy areas (think pass throughs in restaurants). If an area has a lot of echo to it, he’s anxious to get the heck out of there ASAP. It’s just how he operates right now.

We do Early Intervention 1 time a week, ABA/Floortime 3 times a week (2 hours each go), Playgroup 1 day a week with ABA support, OT 2 times a week… His schedule is intense. It overwhelms me and sometimes has me right at the point of burn out.

But it has to be. It has to stand as it now does. This window is not open to us forever and I want him to soak up every skill and opportunity possible while we can. 

If this one year is any indication of our future I have such amazingly high hopes for my little boy. 

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