It has been six days since the culmination of ABA services and after an arduous week of fighting the uncertainty in my head and the discontentment inside of me I have to report that despite the sleepless nights and my fight with anxiety and a bout with depression I am seeing some positive momentum. For the first time in a long time things almost seem normal at least for the moment.
Today, the kids and I visited my mom for the afternoon after our weekly buffalo wild wings visit (because kids meals are half off on Sundays and we are regulars so usually the wait staff will sneak the kids ice cream for free ;)) and it was probably one of the best visits we have had. Not only did Aiden stay dry but as we were walking out of the house he grabbed my hand independently in an intimate way like a child does when they want to be close to their momma. I immediately turned to my mom and mouthed, “oh my God!” and she smiled back at me as she watched from her porch with her arms crossed as she always does standing at the ready no matter how cold it is ready to intercede if her help is needed. I ushered the kids into the truck pushing back the happy tears and kissed his forehead as I reached over to fasten his seat belt. The moment I closed the car door I held it together long enough to tell my mom from across the yard that, “he has never done that before!” That was the first time that I ever felt that precious hand grasp mine unprompted as if to say, “mom I need you. Guide me.” no words needed. I heard him loud and clear.
The toileting accidents are fading even to the point of not needing prompts to attend to this need. He almost seems relieved that it is over. Tonight, for the first time ever as I sat resting in the rocking chair (which is something I could not do until recently as I was unable to shut it off. that constant anxiety in preparation for the impending long day of therapy on the Monday to follow) and before I knew it he was climbing up in my lap, all 70 lbs of him, resting his head on my shoulder and sucking his thumb as he rocked the chair and watched me surf the internet. After about ten minutes of this I pulled out my laptop and we played on Facebook together where he “talked” to some of my friends and even set up a play date on November 13. Yes, November 13th… I said, “What day do you want to go to Miss Traci’s house” and he sat in thought for a moment and began to type, “November 13th”. A date that seemed so random to me. How did he choose this date? The amount of faculties that It took to chose such a date amazed me in retrospect. Not only did he know what a “date” is but he also realized that it is November now and he knew to pick a date past the present date. This kid amazes me everyday. IQ of 48 my foot. I can’t wait until the day when they come up with an adaptive IQ test for these kids because they will blow everyone away.
This week will be crazy to say the least. With no school Tuesday, Voting with 3 kids and autism in tow (no excuses for not voting people!), parent teacher conferences after voting, a speech evaluation in hopes to obtain an assistive technology device on Wednesday, an evaluation with a new ABA company on Wednesday evening, work on Thursday compiled by my current inability to sleep this should be interesting. But hey that’s autism life. Last night I tossed and turned for about five hours before finally falling asleep about an hour before he woke up for the day and I’m still kicking.
But hey, how lucky am I? Despite it all, despite all the areas that I fail and all the times I fall short I’m still able to say that we are still here and we are still winning. Right now, I’m sitting in my rocking chair with a small lamp illuminating the room coupled with my new laptop (replacing the last one he urinated on a month ago), my favorite Yankee Candle scent, headphones in and lost in my own little world. This is my favorite place to be.
I have recently been placing a concerted effort to change my mindset. To be a bit more forgiving of myself as I try to dig myself out of this pit I find myself in. I have been trying to fit in some self care and some positive talk in my head where negative talk once took up all the space. I have been spending my time on things that are meant to better my circumstance. Now that ABA isn’t here I have let my guard down so much. My mind is so much less cluttered and my house has changed so much. I am organized. I don’t stand at my kitchen counter anymore even when I don’t have any dishes to clean just because I’m deadlocked in anxiety. I am finding myself getting the kids off to school and laying back down sometimes falling asleep and other times just surfing the internet until I come up with some way to use my free time. My mind feels free. Its not so immersed in Autism, therapy and keeping everyone happy. I am getting my sense of humor back. I write almost daily now and even in my writing you can see an evolution taking place. Its not ALL autism anymore and some of ME is starting to break through the constraints that autism parenting often brings. Its an obsession. It really is. The acronyms and diagnosis had taken over every aspect of my life. But now, with no real therapy going on It’s nice to see HIM again. Right now, hes just my kid and I think he likes it that way and so do I.
Maybe therapy isn’t the best thing right now. If I had my way, ABA would not be a part of our lives. On Wednesday we are meeting with a new company, a new BCBA, new techs, a new team, in my mind a whole new prison to conform to. I guess I’m over it and judging by Aiden’s recent demeanor I have to assume that he is as well. Things will be different this time. I’m in charge. Screw the table work. We are going to live and they are going to accept him as he is before they try to “change” anything.
I have always been a free spirit and this calculated approach at therapy is not working for us. I won’t conform to it any longer. After this week its been proven that really, I don’t need them and their acronyms or crazy words like , DTT, mand, generalization, probe, master… because you know what? this kid has mastered something the rest of the world can’t. He has mastered love. He has mastered communication and not by the worlds expectation by his own and I get him more than anyone else. He is telling me he is done and it couldn’t have come at a better time because baby I’m done too! How can we know what He can do if we never let him do what he does? if we consistently continue to “mold” his behavior to fit textbook expectations he will never grow and we will be doing the world a dis-service. The world has a lot to learn from him and I am no longer to going to cheat the world out of it because he “has ABA”.