Back in February, Mini went to the Kennedy Krieger Institute, which is a division of Johns Hopkins University in Baltimore, to be evaluated by a Developmental Pediatrician. That visit was initiated at the recommendation of our pediatrician. He was there for about two hours, and met with some nurses and a very highly esteemed doctor.
When we left, she had discussed with me what it meant to be on the Autism Spectrum and what we would need to do to "figure things out" a bit further. I hadn't written down any questions. I was intimidated. I was afraid. I didn't know what to say. I just sat and watched and listened. Her prescription was this: I needed to work to involve Mini in EVERYTHING- get him in a classroom setting that worked for him. He needed to help me cook, clean, do laundry. He needed to ask for things before they were given to him. We needed to establish rules and chores that had to be followed and completed or enforce consequences. We needed to read to him 750 hours a day, make him go to boot camp, and hire a campaign manager... Wait no, she didn't say those last three. But what she recommended felt about as likely.
What she didn't directly state is "I'm sure your son has Pervasive Developmental Disorder." That true diagnosis came in the mail in a written evaluation, a month later.
The diagnoses were so buried within the report that I actually didn't see them until probably 6 weeks after that, when I first contacted our ABA Therapy Clinic, and they recommended we get a diagnosis and a recommendation for ABA from the doctor, in case insurance needed it for coverage. I looked at the report again and said "Oh, hold on, I think he actually WAS diagnosed. Let me forward this to you."
Pervasive Developmental Disorder.
Mixed Expressive and Receptive Language Disorder.
Apraxia of Speech (which we now know he does NOT have).
Social Communication Disorder.
I was the one who researched relentlessly to figure out how to get him into speech therapy and ABA Therapy. The doctor didn't mention them to me, either in person or in the report. She didn't mention that there would probably be services offered to him through the school district. She didn't mention anything about an outside network of people, therapists, families, teachers, that might help us get Mini back on track.
This is why my initial experience of an autism diagnosis was so mortifyingly lonely. I left one of the most esteemed children's doctors at one of the most esteemed establishments in the country with "Make him help you zip and button all the clothes before putting them in the washer." It made me think no one was ever going to understand him. Or me. It made things feel hopeless. If I couldn't get him to button the pants before putting them in the washing machine, then... What? Nothing? That was the end? It felt like it was.
I wasn't ready to except that one small report as The End. I requested a referral to their Center for Autism and Related Disorders, where we remained on a waitlist until about a week ago. That was FEBRUARY, mind you. 9 months of speech therapy and 6 months of ABA therapy and three months of special preschool later, we are going for our "real" evaluation on December 17th. They have a zillion different services and therapy programs that might help us. So many people who might be able to offer research-based advice on how to help him. He is such a better, happier, more well-adjusted version of himself, just with the few interventions we have. Hard to imagine what might be possible for him following this appointment in December. Again, I didn't know that the first appointment at Kennedy Krieger wasn't the real meeting with Autism Specialists. I didn't know we could go for more help and deeper evaluations and more advice and better access to more effective services. I didn't know because I trusted that the "experts" are the end of the line. They aren't.
Friends, when you are a parent, there is no expert greater than you. There is no one who knows your child better than you. No one who will fight with their heart for your child bigger than you. There is no one who can really get him what he needs but you. Overwhelming and scary? Yes. Empowering and inspiring? YES.
Someone once told me that the process of finding help and figuring this out was going to take a *long* time. Friends, it *is* taking a long time. It does take A Long Time. No one person or place is going to be able to fully get "in" with my Buddy to make that one Big Difference that is going to change his life forever. It's so, so much more than that.
But this is the thing.... Isn't that true for everything in life that is truly worth it?
Everything worth striving for in our lives is a process. We don't have moments that are both the beginning and the end. A wedding is the catalyst for a marriage. A birth is the catalyst for parenthood and personhood. A first day on the job is a catalyst for years of professional growth and learning. Each moment is building on the next. With all of these journeys, we make mistakes and we get knocked down and we cry and we scream, but almost *every time*, we come out better than we were when we started. Smarter. More fulfilled. More mature. More self-actualized. We rarely regret the process.
Even though this particular journey feels so much more daunting and serious than any other I've ever walked, I have learned that it's not actually about the destination. Like everything else in life, there is no destination. There is no end. There is just the walk. And after 9 months of blood sweat and tears, I can say I'm not afraid to keep truckin'. My boots are well-worn and muddy, and my face is weathered and wind blown, but my soul is feeling the promise the journey brings. I accept this journey as one that I'll be walking for decades to come, and I am no longer lowering my chin at having not reached the mountain top.
Thanksgiving is the day after tomorrow. I think I'll spend the day feeling thankful that Mini and I are finding the strength and confidence to walk this path, and feeling thankful for the support that surrounds us, carrying signs of hope and unfailing love.
This is a time for Thanksgiving.
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