Bean is supposed to be on a charter bus right now, on his way, with the rest of the 5th grade, to the Baltimore Aquarium. He’s not. He’s laying on the couch next to me, reading a chapter book, and idly watching a small votive candle I let him light on the coffee table. When he’s off kilter, having a small candle lit seems to help him focus.
Yesterday was an Autism Sucks day. Sure, they’ve been a part of our lives for a long time, and it does seem like we have fewer and fewer as the years plow onward- so when one hits, it’s almost harder, because we are reminded, painfully some days, that Autism doesn’t go away, there is no cure, and it’s something he (and his family) will deal with forever. In light of that, here’s a bit of sunshine for those of you in the throes of a young diagnosis, or with children who are high-functioning but who are still struggling with basic skills: it get’s better. It does.
As Bean’s gotten older, with years of OT and PT and intervention strategies behind him, and despite days I felt bereft of hope, it has truly gotten better. Those painful early years of therapy, early-intervention, and hard work will pay off. How? It paid off for our family last night, and I have hope in ways I never could have seen when he was younger.
I spent the afternoon at the elementary school, in impromptu meetings with the principal and Bean’s SpEd team. Yesterday was a catastrophically bad autism day, and we were all meeting to dust ourselves off and figure out a plan to move forward. Bean’s team is imperfect, and there are people I would wish to swap out if I could, but as a whole, they work hard to help him and meet his genuine needs, while not enabling incorrect behavior. Despite having a terrible day, the principal green-lighted him for the field trip to Baltimore, and with her encouragement, his aide moved schedules around to accompany him.
There are a lot of variables on any field trip, but adding in a child with autism in an immersive, general-educational environment, with all the chaos, disorder, and openness of 30 kids in an Aquarium, and it’s…tense. I appreciated the teaching team’s willingness to add his aide, and to take extra precautions in order for him to be with his class— these are all wins for the Special Education system and the people fulfilling IDEA for children like Bean.
When Bean has one of the now-rare bad days (and if you’ve got a kid with autism, you know what I’m talking about) there is something like an emotional hangover everyone suffers. It’s emotionally wrenching and physically exhausting to have a melt down, and he usually sleeps a lot afterwards, while everyone else puts the pieces back together. When he was younger, he was oblivious to how he affected others, but as he’s gotten older, that’s changing.
Last night, when Jon and I sat down to talk to him about the pending trip to the aquarium, he surprised us. He said he was worried it might be too much, and after thinking about it, and following such a hard day, he felt the bus ride and the commotion of the aquarium might make it really hard for him to stay calm. This is the very first time he’s shown this level of self-awareness, this ability to see what might be obstacles in front of him, and name them. It’s also the first time he’s willingly offered to give up something he wanted to do— he really loves aquariums.
It’s a fine line between avoidance, or letting him retreat to safety, and realistically acknowledging and avoiding circumstances that wouldn’t be good for him. I’m not sure exactly where that line is on this situation, but the fact he addressed his own needs for the very first time, and then was willing to stay with his decision was huge. He wants to go to the aquarium as a family, and he knows he’s going to have to complete a separate project for his teachers.
I’m really proud of this boy. It gets better. It does.