Within the past few weeks, I'm even starting to have an interest in reading whole books about Autism. This is huge for me, because that means I'm starting to feel like I KNOW MINI well enough that I can actually start learning about the broader diagnosis in a big way. Until now, I can only handle learning in snippets (3 minute videos, five paragraph articles, short blog entries) because I'm so overwhelmed by what is happening in the space around me every day. Too much learning SMACKS me in the face every minute. Books are too much. So the interest in reading books feels like some kind of breakthrough on our journey.
It's hard to do all these things because the therapists, the videos, the blogs, the books... Are all FILLED with bad news. There's some good news in there, of course, but it's more bad news than good. Everyone tells me to focus on the good stuff, on the breakthroughs, on new sentences uttered and new friends made and new letters written and crafts made and tasks completed. But it's REAL tough to ignore the bad. Because, friends, there is a LOT of bad.
Lately we've had lots of good stuff happen, so I share it because I hate sounding like a miserable complainer. I try to focus on the good stuff. But it's not all roses and sunshine in MiniLand. About a month ago, D mentioned that we should start talking about planning for Mini's long-term financial security. He suggested that we talk to a financial planner about how to set money aside in case Mini can never work for a living or live independently. I got immediately defensive when he mentioned it. Within 5 minutes, I stood up and walked out. Preparing for failure while working my ass off for success was not something I was able to do.
At the end of his ABA sessions, the final 10 minutes are when his therapist gives me the raw data from his session. How many times he said no or didn't do what was asked verses how many times he said yes, or did. They tell me how many times he asked an unprompted question, what words or sentences he uttered that demonstrate progress or don't. They give me "homework"- meaning, things we could be working on at home to enhance his progress. During this discussion, we all need to clean up his toys. The last few sessions, Mini flies off the handle if the therapist puts away his favorite toy instead of me. When she puts it away, he screams, hits her, spits at her, and kicks her. I have to ignore this, as does she, and I HATE it. I don't look him in the eye, don't speak to him, and force him down the hall to the car with him carrying on: "I don't WANT to walk!" "Don't hold my hand MOMMY!" ALL the way to the car, screaming. The worst part is that Miss Allison now will always have to put away that toy at the end of therapy until he doesn't care anymore. I hope that day comes soon.
Sometimes he'll obsess over random things at home. This week, it was opening and closing various doors in the house in the same way the doors on his school bus close. They're jerky, automatic doors... they close in three jerky movements. He started walking around the house making all the doors close like that. Kitchen cabinets, bedroom doors, bathroom doors. I had a hard time distracting him from that task. It seems that when these kinds of things happen, his brain has a little switch that turns on, and all of his little quirks become amplified. When we were late for therapy yesterday, he stood in the bathroom, looking at himself in the mirror, saying the same phrases over and over again. I fly off the handle when his "typical autistic behaviors" are rearing their heads. I can't stand it. I don't react well, and then I beat myself up for the day about being insensitive. I can't stop reacting this way. It's hard to watch, it's hard to live with. It's just really damn hard.
Those are only a few examples, but this is the level of intensity with which our life is played out. We are ALWAYS in therapy with him, from the moment he wakes up in the morning (when I ask "Did you sleep good?", it sometimes takes a few tries to get him to answer. He MUST answer before we can move on) to when we go to bed at night "Put on your jammies, bud. Focus, it's not time to play with your trains yet. Put on your J's. Buddy. Focus. Here's your shirt, put it on." All day long, in between therapies, it's me and Mini. Me constantly asking questions and not letting up until I have an answer. Me demonstrating how to do x, y or z task. Me asking "Buddy, what animal says ROARRRRRR!?" until he can answer, which is sometimes 5 minutes later. Then I move to the next animal "What says RIBBIT!?" I guess maybe all parents don't live therapy all day every day. I just believe I have to do everything I can, and reinforcing therapy at home by being consistent is part of that. Maybe wrong. Just always have to do everything I can think of.
Neko Case said "The worse things get, the harder I fight. The harder I fight, the more I love you."
I read that quote this morning, and it seems like no other quote I've ever read in my life more accurately describes mothering a child on the autism spectrum. I'm SURE Neko was talking about a romantic relationships with this quote. But it's the intensity I feel when parenting this guy. It is so hard. He is so relentless. I'm mostly not proud of how I'm handling it. Every day feels like a marathon harder than any actual marathon I've ever run, any test I've ever taken, any emotional battle I've ever fought. And yet, at the end of the day, I feel love exploding for him. I feel exhausted, I feel terrified, I feel humbled, and I feel huge, huge love.
So we'll go and talk to an attorney about Special Needs Trusts, and whether or not it makes sense to get one going for Mini. And yesterday, when I got to the bus, I got there with a big bag of his favorite chips so he would forget about closing the bus door and eat chips instead, thus avoiding the obsession with closing doors in the house. We'll continue to do that until he forgets that closing the door was cool. And Miss Allison will clean up toys before I get there at the end of therapy, so he won't have the option of choosing ME and only ME to put away the Potato Head. Yesterday at the end, he was outside playing with rice and beans and was had a perfect separation, happy and giggling.
I'm still not able to think anymore than a few days into the future. I still don't know what next month might look like. In short, it sucks. But I know this love is beautiful, and this little boy of mine is remarkable. When he lays his head on his pillow each night, I say "I love you." And I don't think he knows what that means, and he doesn't say it back to me. But, I know he closes his eyes feeling that love. Feeling safe. Feeling happy. And most of the time it's gotta be okay that that's all I did for him today.
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