I am going to try humor here, but I don’t know if I have it in me today. If you’ve read the news you might have heard about Stuart Chaifetz putting a wire on his autistic child and discovering how the boy was being treated at school. If you haven’t read the story, here is the link:
Of all the things we do day after day, the -quite possibly- most difficult one is sending J out into the Big Bad World. This is an exercise in trust; we trust that J will meet with kind, or at least not horrible, people out there. The same can be said of parents of neuro-typical children, and there is always the concern that a “normal” (I hate that word) child will be bullied or mistreated and won’t speak about it out of fear. When your child cannot communicate effectively the sinking feeling can be similar to Indiana Jones’ when he discovers the Well of Souls is full of, of all things, snakes!
The general idea is to send our children (neuro-typical and not) into the world and let them learn to fend for themselves. This, preferably, happens in phases and not all in one day. You don’t want to send your kid out to kindergarten and have him return with a pack of cigarettes, a condom in his wallet, a mental map of the “bad” neighborhoods and how to avoid them, cussing like a sailor (or a Catholic school girl,) and saying things like “we’re all gonna die, man! We live to die…it’s all bleak!” You want them to learn, little by little, that the courtesies, rules, regulations, negotiations and lines-in-the-sand they’ve been introduced to at home apply elsewhere.
That our children cannot always be within the protective embrace of our love and acceptance is obvious. At one point or another the children have to be unleashed on an unsuspecting world, which may or may not be prepared to deal with them, and -possibly much to our chagrin- we have to learn to let go. With TGG I had the option of asking how his day went and hoping he’d talk about it. With J I’ve been flying blind for a long time…
A few years back, when J started behaving erratically, we had our concerns about what went on at school. His one-on-one aide wasn’t formally trained to work with developmentally-disabled individuals, but the school thought it was a good fit and we trusted that they were right. In hindsight, we were pretty stupid. The person in question ultimately did more damage than good and manipulated J and us in ways that now make us feel ashamed for the time we lost in the process. We don’t think she was evil, but we think she knew she was getting away with a lot, and she was looking out for herself first and foremost.
Since we are not in the habit of placing blame to make ourselves feel better or to remove any responsibility from our own shoulder, I will admit -hand over heart- that we unintentionally engaged in lazy parenting and allowed the co-dependence between J and this person to escalate until we realized that it was more noxious than we suspected originally. By then, when we tried to pull back and redirect, a point had been reached where drastic measures were absolutely necessary, a crisis had to ensue and we had to, ultimately, resolve it…and we have. WE had to learn the lesson, and WE had to mature beyond the point we had reached…for J’s good, WE had to take the bull (in this case, flower-loving, gentle until riled up Ferdinand the Bull.)
Stories like the Chaifetz’s make us realize how lucky and how foolish we have been; trust is a necessity that is forced upon us because, as parents, it is part of our role, but at one point we were so trusting that we didn’t realize our son was conflicted because someone was taking advantage of his affection. We were involved parents, but we were too trusting in all the wrong ways, and we were -ultimately- responsible for our child’s situation at school.
Fast-forward to now: we still are the same parents who want to help and participate, but we hold ourselves even more accountable for what goes on in J’s life outside of this house. Every time we start to work with a new team, I put in writing what I know J can do, what I expect him to achieve and what I’m willing to do to achieve this; the whole team at school gets a copy and when we go into IEP all my concerns have been addressed. I don’t leave everything to the school, and the school staff know it and feel they can come to me with any concerns they have. Our comm book goes back and forth every day, and I am on everyone’s speed-dial.
But I still have to trust that J is holding up ok when he’s away from home, and I have to learn to be ready for whatever develops. Have you ever tried to be ready for whatever develops when the questions marks are more abundant than any other punctuation? Yeah…I feel like that. My father teaches all the kids in the family to play chess when they’re about five years old; he puts emphasis on thinking of all the possible scenarios. The clue, he tells us all, is to take the time to think, to anticipate but wisely…I feel like I’m playing chess every single day. Of course, there are times when it feels more like I’m playing the chess version that C3PO and Chewbacca are playing in Star Wars. Yes, I hear a voice that says “let the Wookie win” in my head.
As the family van pulls out of the garage and I wave J goodbye, I always say a quiet prayer. It is not particularly reverent, but it’s heartfelt: please, please, please God…don’t let this be a fucked-up day. Mind you, it’s ok if it’s a bad day, a difficult day, a moody-J day, an exhausting day, a complicated day, a busy day. I just don’t want it to be fucked-up because that would mean that something has gone beyond what we (meaning J and us) can properly handle in the short-term. I say the same when anyone leaves the house and I won’t see them for hours…
The people I send out are not perfect, of course, but the one-piece I want back is both physical and emotional…it’s not about having a perfect life; it’s about having the life that is perfect for each of us within what is possible, and that means *sigh* “letting the Wookie win” from time to time, but not ALL the time.
Mr. Chaifetz, I think, knows exactly what I mean.