Bucking the Mainstream

Last week we started the process of getting K a new neuropsych evaluation. The last one she had was in first grade, and because she is currently outplaced, we need something new to figure out what's best for her moving forward. The school she is at, while great, isn't a long term solution, but we have yet to tour any school that fits the bill. We hope the new testing will point us in the right direction, when it comes to choosing another school down the line.

The thing is, I am nervous the kind of school we want for K doesn't exist. I also worry that we'll be pushed to choose a rigid, ABA, school. Why? Because after spending just a short amount of time with K, our new psychologist asked if we had toured one particular school, which is considered the "most" ABA school around. It was a school not even on our radar, quite honestly. It has a long wait list, for one, but it is also a school I didn't think served children at K's place on the spectrum. I know these days it is cool to loathe functioning labels, but the school, I thought, served a more severe population (although I could be wrong.)

Honestly, we don't really want K in a strict ABA program. Yes, she requires a very solid routine, but she is also a child who ends up feeling bad about herself if she doesn't "earn" all her stickers, or rewards. She suffers from probably the lowest self-esteem possible, and ABA isn't great for a kid like that. Sometimes it can just leave a child feeling like everything she does is wrong, and I am trying so hard to get away from that model. The school she is in now doesn't use ABA, and she is doing so, so well. But, the reality is, we'll have to move on from there eventually (for many reasons.) So far, we are coming up empty in terms of options.

I know there are various ways ABA can be done, and there was a time it was the only therapy I wanted (mostly because I was told it was the gold standard), but I just don't see it working for the kid K is now. There are parts of my child that ABA would want to change, and I am really in a place of wanting K to be herself. To embrace who she is, and not think she needs to be a different person in order to be a worthwhile human being. Passing is not my goal for K. Mitigating anxiety, helping her achieve the things she wants to achieve, those are my goals. Making sure she stays seated for dinner, doesn't jump up and down when excited, or sits in a class of 30 kids without issue, are not. My hope is that she can surround herself with people who completely accept her, who will love her, quirks and all. I am sure that sounds naive, but not more naive than saying I hope one day K is a different person, who doesn't look autistic.

Unfortunately, because ABA is the gold standard, that's what most schools use. Changing behaviors is a big part of therapy when you have an autistic kid. But, what happens when you don't want to change behaviors? When you realize trying to change who your kid is, only makes things worse? I'm not talking about letting aggressive behaviors go (although I do believe behavior=communication, and there is always a reason for aggressive behaviors. I know with K there certainly was, and finding out the reasons behind them=buy buy aggression.) I'm not talking about letting my kid get away with whatever she wants, because she's autistic. I still teach my kids the same I would any child, but I am not looking to change who they are at their core, and, unfortunately, that's the experience we have had thus far with ABA, and related social teachings.

Some have suggested I just homeschool, which, sure, is a great idea, except I know my limits, and there is a reason I changed my major from Education after just one semester. I don't have the patience. I don't have the degree. I don't think I would do K justice being her teacher. If at all possible, I'd love for her to be at school, with peers, and with people qualified to teach her. Homeschooling is a last resort to me, and we aren't quite there yet.

But, on the flipside, I am realistic that the program we want for K very well doesn't exist. Getting away from the goal of wanting our kids to "pass" is a fairly new idea, and the majority of people still see autism as something to be fixed.

So, here we are, going forward with new evaluations which, in the end, will probably suggest programming we don't want for our child. We'll move forward with the testing because we need it to keep K outplaced anywhere, but I would be lying if I said I wasn't nervous the district will use it to try and force programming we just don't want.

I'm not saying ABA is inherently evil, or that there are kids who don't benefit, but I really believe it won't help K at this point in her life. If only there were more schools that looked past ABA, as well.

Reality Check

As you know, we have been going through the painstaking process of trying to find K a new school, after the district agreed to place her privately. Getting them to agree to that was a huge victory, yes, but I didn't realize just how difficult it would be to actually pick a school. I realized just yesterday, though, that the only reason it was hard was because of my own expectations, and failure to accept what was right for my child.

The first step in this process is finding K a 45 day placement. This is a school that will evaluate her needs, and at the end of the 45 days they will tell us what kind of permanent placement is appropriate. However, it could also end up that she just stays at this intial school, and so we wanted to make sure wherever we sent her, we'd be willing to send her long-term, as well.

There were lots of things my husband and I thought we wanted for her. A school with an emphasis on academics, because we didn't want her to fall even more behind. A school with other girls her age (this one we knew was a reach, but a person can dream). A school that was pretty much exactly like the public school, just with a more understanding staff, who actually got autism, and anxiety, and learning disabilities.

We were afraid of her being treated with kid gloves. How would she ever be successful in life if she wasn't pushed? If we didn't set the bar high? Sure, we wanted her in a setting that would ease her anxiety, but we failed to realize that in order for that to happen, things would really have to change. We were 100% ready to put her in a school that we worried would bring back our overly anxious, frustrated child. We were just hoping things would be OK because it was at a specialized school. In reality, though, the type of school doesn't matter, if the atmosphere is too overwhelming. Even the best staff can't magically make a child change into someone who isn't affected by what is going on around her.

Yesterday, K had the chance to visit the one option we thought was not going to be a good fit. In theory, it was perfect. A stress-free envioronment. Kids are allowed to work where they want, take breaks whenever they want, and where even the most benign sticker charts don't exist. The staff does everything in their power to make the school day as anxiety free as possible. The kids are even encouraged to bring in comfort items from home. It sounds great, but how does it prepare my kid for life? Even though we have a child whose anxiety could probably power a small village, my husband and I were still caught up in needing K to be placed somewhere that looked like a "real" school. Ironic, since "real" school didn't work for K, and we fought tooth and nail to get her out.

There was even part of me that thought K would hate the school, herself. I was fully prepared for her to charge out at some point, saying there was no way she was going there. During the hour she spent visiting the classroom (without me), I sat in the cafeteria imagining the giant meltdown she was probably having, being soemwhere that was such a bad fit.

What I was not prepared for was how she actually felt.

When I came back to the school after her visit, the first thing she did was throw her hands in the air and proclaim, I love this school! When can I come back!?

It was the first school she said that about, of the several we've visited. My husband asked if it was just because she spent more time there, which is a valid question. However, the fact that the "other" schools had things like swimming pools, and wood working shops, and class pets, and she liked this one better (which has none of those things), is very telling. The other schools she liked because of those "extras". This school she liked because of the kids, and teachers. She felt safe there. Not even the promise of a swimming pool could trump that.

It's also just a calmer environment than the other schools we've seen. The classes are very small, just 4 kids and 2 teachers, each. Pretty much everything is the opposite of what we've dealt with before, and that's probably what K needs.

It was a tough thing, to really sit down and be honest with myself about this whole school search. As much as I tell myself I've let go of all my dreams for K, clearly I haven't. I've always been honest with myself that inclusion just doesn't work for my kid, at least not now. But, I had to take that a step further, realizing any school that is going to fuel her anxiety in any way, is not a good match. It's just something else to accept. Sometimes it's hard to reconcile that the kid who just went for a bike ride alone, is still miles away from her typical peers. At least when it comes to school.

So, tomorrow K goes back for a 4 hour trial at this new school. If all goes well, that's where she'll be going. I know in my heart it's what's best...I just have to let my mind catch up. Letting go of dreams doesn't just happen in toddlerhood, when you are first faced with diagnosis. I'm just beginning to realize that now. K will be who she is meant to be, and I just have to keep reminding myself that. It's what she needs, not what I need.

Right now, she needs this school.