Autism, Appointments, Assessments…Oh my!

“Different not less” – Temple Grandin

Life post diagnosis is not at all what I imagined it would be. That sounds ridiculous I know, it sounds just as ridiculous to me. Like magically I would get the diagnosis and things would be better. NOT!!!

Nothing at all has really changed except for the number of appointments we now have and the number of places and resources and research I have to coordinate and deal with. Things have not become easier, not immediately anyway, and I’m not sure if it ever will. The search for our new normal has been the hardest for this not so patient mama.

All in all, however,Caleb’s diagnosis has still been a positive thing and I constantly remind myself of that. There is so much he could now be eligible for as far as getting the help he needed to progress and grow and learn. The first thing on my list was ABA Applied Behavioral Analysis I needed to research the benefits, locate a facility, contact my health insurance, oh and make sure that the facility that I found would be best for Caleb AND take my insurance AND close to home AND the co-pay would fit into my financial budget AND would also NOT have a year wait list…..that’s a piece of cake. Done. Done. Done. And Done!

Surprisingly I had found a place that could evaluate Caleb almost right away, the evaluation would last 2.5 hours where for 2 of the hours I would watch from behind a closed-door through a mirror. Naturally he was Mr. Charmer and he did great. He didn’t cry or miss me once. We left out of there with a preliminary plan in place that would have to be submitted to my insurance for approval. We also left with a tentative schedule AND the out-of-pocket cost.

I was starting to see why the lifetime cost of an individual with autism could range from 1.4-2.4 million dollars according to researchers.

I left that visit feeling anxious and overwhelmed. I didn’t know how I was going to make this happen but I knew I would. I knew ABA wasn’t mandatory but it was recommended. I knew that Caleb was ready and eager to learn. I’d seen his progress with his interventionist and his occupational therapist and I knew ABA would only allow him to continue to thrive. I knew this. I know him. How could I not do whatever I had to make this happen? Could I live with him not going? Early intervention and OT would end the day before his birthday in June as the federal program he’s enrolled in only goes up to age 3. We also found that he will be starting school in August. Would he receive therapy in school? Yes. Would it be enough? I don’t know. Is that therapy free? Yes Do I risk the chance that it will be enough? I don’t know.

Mom guilt was back and this time she got me good. By the time I got home that day I had ended the pity party and I got to work. I was back to researching and this time I was looking up funding and grants for children with autism. I started applying and praying and applying and praying. If God had brought me to it he would bring me through it.

ABA was checked off of the “To do” list and it was time to work on the next items. I needed to follow-up with a neurologist and I needed to meet with the school district for yet another evaluation so that they could assign Caleb a school and make their recommendations for what assistance he would receive. There was one week where Caleb had both evaluations back to back along with his normal therapy sessions and I was exhausted for him but I knew we had to get this done and he handled it well.

Other than that we were all doing well. I mean what choice do we have?! Caleb’s language has become clearer and his vocabulary is expanding. Do we have meltdowns still? Absolutely. Do we also have normal toddler tantrums? Absolutely. Is he still not eating great? Absolutely….but he’s also the happiest little boy you’ll ever meet who has an endless supply of hugs and the best smile in the world. Both of which he likes to share with strangers.

We’ve had our share of steers and awkwardness, I don’t know if it’s increased or if my Awareness of it has increased. I never apologize for Caleb’s behavior but I often find myself stopping short of saying “he has autism!” I don’t want that to be his label. So instead I usually smile awkwardly and act like they’re the ones that are strange..LOL! I read an article immediately following Caleb’s diagnosis back in March and it was from a mama giving tips on how she navigates the first years of autism and the one thing that struck me the most was when she said never apologize. NEVER apologize, never say “oh I’m sorry he has autism.” It struck me because in those hard moments in public that’s what your brain goes too. You want to apologize if your kid is a little “handsy” with others or if he’s blocking the slide at the playground because he only likes to sit at the bottom, or if he’s screaming his head off at the grocery store mid meltdown and you can’t determine why. You just want to apologize because you could be disrupting someone else’s experiences. However, the point she made which is most important as Calebs Mom, is that you don’t want him hearing you say “I’m sorry by son is autistic”. As if to say it’s a burden and something to be sorry about. Caleb understands everything and he damn sure isn’t deaf so that’s never the message I want him to hear. I also don’t want him growing up thinking his diagnosis is something he has to apologize for.

Autism is exhausting and overwhelming. Autism is draining and frustrating. Autism is challenging and different. But Autism is not Caleb and Caleb isn’t Autism.

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