Saturday, August 09, 2008

Week's Round-up Rant

We are finally back from the autism conference. I have to say, a week is far too long to talk about one thing and one thing only--especially when you aren't entirely passionate about it. Now, if it were a conference about puppies, or gardens, or pottery, I could get into that. But by mid week we were done. We did have some great conversations with some work folks, and had some good eats and shopping excursions while out and about in the "big" town.

I have a few observations that I would like to share--I apologize in advance for the harshness of some of the things I am about to say . . .

1. I had noted that at this conference, and elsewhere in the world of autism, it has become very important for people to qualify the severity, or mildness of their child's autism. For instance, one could overhear hundreds of times at the conference "My son, who has high functioning autism" or "My daughter, who has aspergers" BLAH BLAH BLAH. Never once did I hear "My son, who is severely impaired" or "My daughter who is extremely limited". I bring this up for the mere fact that if I were a parent of a child who was severely affected by autism--of which there must be many-- I would have felt very lonely and left out of this large event. I find this is true not only here, but in other arenas as well when it comes to autism. No one wants to have the child who can't toilet themselves, who rocks in the corner most days, who cannot be reached. I feel so bad for these parents, and the lack of support they must feel from their own community.

2. On this same vein, there is such a divide between those who feel it is ok to medicate their children, and those who think it is a cardinal sin. Again, why must parents be made to feel guilty for trying to do something that will help their children. I sat in a session where people went head to head on this issue-and in the end I felt as if they'd all lost sight of what was most important. The children they speak so eloquently about wanting to help. It is not helpful to them if a parent chooses to withhold something that may be beneficial. I know that is my view, and I do have a right to it. But why would you continue to allow you child to be anxious to the point that they are hurting themselves and others, simply because you don't want to medicate them? I get that there are risks, and that it isn't for everyone--and I am in NO WAY advocating for a blanket mass medication of the autistics. But I am saying it shouldn't be ruled out as well.

3. There are parents who spend every last minute of every last day fighting so very hard to be sure their child has hours and hours a week of services. They view the professionals as people they must battle with-uncaring and horrible people. Yes, this was actually said by some that we as professionals are uncaring and lack professionalism and understanding--because if we cared, we would give into every whim of these parents, even if what they are asking for is not in the best interest of their child. More is not always better-and people, just because you want 60 hours a week of therapy for your child doesn't mean it will happen. Perhaps what you are looking for is a way to feel better about the circumstances you are in. Save the child from the mass quantities of therapy and get a counselor yourself. It will be better for both you and your child.
Again, I feel for the parents who are doing the best they can--who don't care to spend every waking moment fighting this-their child, their children's team, their programs. They recognize that there is balance in everything, but I imagine they could also feel bad that they aren't like those who are a bit more "passionate" about their cause.

4. Inclusion at any costs sucks-really really sucks. There are some parents who feel their child should be included with typical peers, even when it means they will miss out on more intensive therapies and work in a more specialized setting. For instance--this child doesn't have autism, but another disability. The child will be going into 4th grade this month, and is very limited. The parents have fought and fought for this child to be included in a regular classroom, and so they're are educated besides typically developing peers with an aide--who is constantly changing no doubt due to the intensity of this child and how difficult it must be. They also are quite behavioral and often require interventions to keep them on tasks that are distracting to the other children and not pleasant for them either. I would also venture to say that most times any kind of demand is placed on them, there is a behavioral outburst. This is not fair to the child-or the other children. I get that these parents feel this child SHOULD be included with their peers, but I wonder often how much further along the child would be had they had the opportunity for more intense attention to their needs. Transition planning starts at 14 in PA, which means that the focus of school turns to vocational training if a child is not really keeping up educationally. I just find it sad to think of what could have been if the parents even tried seeing how the child would have done in a more specialized setting. Would they be able to talk and communicate more? Would they be less frustrated by the demands that clearly cannot be managed in this setting? Would the child welcome the opportunity to slow down a bit and be with others like them? I don't know the answers--and clearly it is very easy for me to say all this from my post-not having a child in this situation. I have another family I know--they have a very healthy outlook on it all-- it seems, I guess I could be wrong also, but we have had very candid conversations about this. They recognize that it is what is in their child's best interest that is best. They are able to look at the needs from a variety of angles and make decisions that honor who that child is-right then and there--not who they wish that child was or could be ten years from now. But what will be in their best interest right now. It is refreshing, and I know not easy for them to deal with the pressures put on them from others who believe in inclusion at any cost. I say be included in other areas--church, community, libraries, parks. Give these kids a chance. Maybe for some that means inclusion in typical classrooms, maybe for some it is a more specialized setting. I don't have the answers, I just with we'd all get back to the core--the whole child.

I think that is it. Sorry that ended up being somewhat of a rant, but it is hard to watch sometimes. All these parents and professionals who have the power to move mountains, but because they can't agree on how to do, when to do it, and how often to do it--they end up spending so much energy on that, and forgetting what is most important. The child, and allowing that child to be a child-first and foremost.

I wish I had the magic wand to make this all better for these folks. But I don't. In the meantime, I will keep an open ear, and try and help them come to know what is right for their child, their family, and their hearts.

1 comment:

Lynilu said...

Oh, Beans, this situation you describe applies, with some changes, of course, to so many areas. I remember going to several conferences from which I walked away more frustrated than I could say. As long as we are human, dealing with other humans, there will be dissent flying in every direction.

Don't you wish we could all just be "OK"?