As I watch J, our second son, jump, rock and hum to the intro of one his favorite Lego cartoons, I thought maybe it was time for a update on our boy.
We are a little two months into his ASD diagnosis and I can’t help but wonder if I’ll ever forget the actual day when we were sat down in a small builder beige room with two lab coats as they reassured me I wasn’t crazy. Probably not. Our life is broken into preASD and ASD now.
We are (fingers crossed) a few weeks away from J starting applied behavior therapy. The journey to get to this point has been fairly easy. And I’m not saying that to brag; it’s been a miracle. Our insurance pays a substantial percentage of the therapy and 24 hours after we were approved for the therapy we were matched with a behavioral services company. Shortly after Christmas, we were given the details. A RBT (registered behavioral technican) will come to our home or daycare and work with J a specific amount of time/days each week. A BCBA (board certified behavioral analysist) will then video conference in from Colorado once a week to supervisor the visits.
A week later, we got a call that our BCBA in Colorado wanted to talk to us. Thank goodness for modern technology! The more I read about people throughout the last few decades who were or still are pioneers in autism advocacy, the more I realize that we have come a long but we still have a ways to go when it comes to understanding and embracing all forms of special needs. And we have to take advantage of every opportunity out there in honor of those before J.
To think that people were locked up and deemed crazy saddens me. I try my best to choose my words carefully when I call someone “odd” or “crazy” or “special” now. I never thought about it until J was accepted into the Acorn Patch that harmlessly joking that people ride the “short bus” when they goofed something up was no longer a good idea. It’s takes some rewiring but we have plenty of time to reshape our minds (I hope). Obvious words that are considered offensive were never in my vocabulary. People are generally surprised when I cuss – I have resting nice face – so for me to use some obscene word would probabaly make someone faint old Hollywood style. It’s the harmless jokes we don’t even know we are making and that takes real inner work. And real inner work takes ten times more patience and love for yourself than you imagined. Trust.
I read once that we are all in a “imperfect progress” state and once we accept that and start loving, forgiving and embracing ourselves the better chance we have to living the joyful and peaceful life God intended for us. I love to be reminded that I will never be perfect and that God will always be molding me into the woman, the daughter, the wife and friend he destined me to be.
J’s assessment was less than an hour and I had mixed emotions – excitement, nervousness, uneasiness – after it ended. J didn’t even acknowledge her on the screen as my other two couldn’t wait to jump in and say hi. At first, I wanted to apologize for his behavior by then I could feel myself holding back . This was not her first rodeo. And if I start apologizing now, will he think everything he doesn’t will need a explanation? I don’t want him to apologize being himself. His behavior isn’t a mistake, just different.
J’s current therapies (OT, PT and speech) are all covered by the state and they are down the street from us- five books from our house. We can sit and chat about how sweet J is or something funny he did, and I know I’m not getting charged by the hour for those sessions. I’m a talker so I think the biggest challenge for me may be getting my point across without a handful of examples and stories. I believe that being open and personal will get you farther in life because we are all human. Deep down we all want the same things: acceptance, respect and love. But these conversations comes with a price tag.
It turns out I had more paperwork to fill out for this assessment. I wonder by the time J is 18 if my middle name will be paperwork. How many trees have died for three lines to be filled out on a form? It’s 2017, insurance companies. Just sayin’.
A few days later, the owner of the behavioral services company informed me we would be having a BCBA and a BCaBA. Wait a minute, what’s a BCaBA? I recently joined a few special needs support groups on Facebook for moms and I admit I felt part of the “cool” club. So far in two weeks time as a group member, I’ve only had to search a handful of unfamiliar terms, such as “stimming.” And now I can already hear myself saying “ABC” instead of BCaBA. A BCaBA is a board certified assistant behavioral analyst. It didn’t bother me when I found out we would have someone with more education working with J one-on-one, I just wondered if flash cards would be handy to remember all the terminology. And then I wonder about explaining it all to friends and family.
I’m a storyteller, which is apparent if you are this deep in my post – so I’m thinking I should look to my journalism schooling on clarity and conciseness when it comes to communicating with all the professionals now added to my contact list. Or I can just toss my overthinking overboard and add all his new therapists to the Christmas list. Okay, maybe not that extreme, just a Christmas card will do, but you get the idea. No need to go all Martha Stewart.
These people are going to become a part of J’s childhood memories, though. They are going to be teaching him things I can’t and showing me how to help him in ways I would have never dreamed of to try. I think of the scene between Will Ferrell and John C. Reily in “Stepbrothers” where they ask each other if they just became best friends.
The older I get, the harder it is to make friends – true friends versus Facebook followers (why is that?) – but that doesn’t mean I won’t try. Life is too short not to take chances and try. Even if that try is just getting your kid to eat something else beside chips – that’s still a victory. (cue cheering crowd)
We always talk about big victories and giant leaps as a society but I think special needs moms really know the importance of small changes and victories, the ones that build off each her and lead to the bigger ones.
And this new therapy is a big one, and I think we are ready or at least God thinks we are, and that is enough for me.