It has been 20 months since M’s diagnosis, nearly two years. It has flown by in some respects. In others, it has felt like the longest night of my life, and I keep wondering if I will wake up.
I wish I could say that we have made more progress in this time. I wish I was writing to share that we have uncovered the secret to unlocking M’s mind and that he is talking to us, that he plays with his sister, that his teacher at school says he has come so far.
But, no. M has been quite stagnant. We still struggle to pull him out of his “self-talk” to focus on us when we’re trying to get his attention. We still don’t get consistent answers to basic questions such as “What is your name?” or “Do you have to go to the bathroom?”
The truth is, it has been a long, long, uncertain, hard, and very scary road. In the past couple of weeks, M has started singing “Head, Shoulders, Knees and Toes.” Which is awesome. I cried tears of joy. And then I got one of those Facebook memories on my timeline from two years ago. It was a video of M singing the same song before his regression. It was so clear. He was laughing. He knew all of the body parts. And I cried again, though not tears of joy this time. It’s such a double edged sword, because — hooray! — he can sing that song again. Because he wasn’t able to do it this time last year. But it’s so hard to see the comparison side-by-side. Because he doesn’t get where the “shoulders” are now. And there is no laughter. And his voice is different, his whole demeanor is different, his movements, his level of engagement . . .
As I was walking through Penn Station to my train recently on my way home from work, I passed by a homeless man. He must have been in his 50s. He was standing in the middle of the station, pants down around his ankles, clothes and body filthy, head thrown back and dumping a bag of Doritos into his mouth.
And I could not stop the tears. Because my M loves Doritos.
Damn, this is another sad post. I hate myself for being such a downer when I write, and I’m truly not this miserable all the time, but when I am feeling like this I just want to, need to, get it out of my body and hurl it into the ether. So I guess this is my version of a message in a bottle, cast into the sea for someone else to read. Maybe to unburden myself by sharing it. It definitely helps to throw it, as far as I can.
Last week, M came home from school in a diaper. He has been time trained and hasn’t worn a diaper since March of last year. Apparently he had an accident at school (2nd in a week, not sure why this is now a problem) and ran out of clean underwear there, so rather than have him go “commando” they gave him a pull-up. Which my father (who picks him up from the bus and watches him until I get home from work) says was wet when he got home.Iwas livid. I wrote a letter to his teacher saying that I would rather have her call me to pick him up than ever put him in a diaper again. I made it very clear that no diaper should ever touch his body at school. I called his social worker (who I not-so-secretly hate) and explained that “this feels like the antithesis of everything we are trying to do here!” She agreed, sort of, in an annoyingly “we will do what you ask us to do” way but not accepting any real wrongdoing. Chris and I have a meeting with her today. I can’t do this alone. I feel like my brain is crumbling.
This week we let go of his at-home ABA therapist. Because I’ve been following the blogs and Facebook groups of autistic adults and learning more about how harmful ABA can actually be. Many autistic adults claim to have PTSD as a result of ABA. And I don’t know if it is the right decision or not. I’m scared of choosing the wrong thing here. I want to give him the best shot at life, at being independent. And I want him to be happy and have a sense of autonomy and self-worth. And all the doctors say to do intensive ABA and all the autistics say it is abusive. So, in this, because science has failed me, I can’t trust the doctors. Because the medical community that doesn’t know how or why autism happens, where this regression comes from, to know how to best help him.
Today, after my meeting with the social worker, we’re taking M to a speech clinic for a new speech evaluation. Because I can’t just stop behavioral therapy and do nothing. So we’ll focus on speech, and i’ll ask my dad to take him there once or twice a week after school. He is 4-1/2 now and still not communicating verbally. So I wonder if sign language or an assistive device will help him. His school says no. But his school also sends him home in diapers, so . . .
Clearly, I’m having trust issues.
I sure wish kids came with instruction manuals. I feel like a complete fraud most days, faking my way through this parenting thing. Making shit up, messing up, trying again, never quite getting it right. I sure wish someone would send me a message in a bottle. And wish that message was a guidebook for all of this.