Information for parents of disabled children

Wednesday, May 5, 2010

Best of Intentions

We seldom think of school administration as a high-flying career. One could easily imagine it as a thankless job with little reward other than the love and devotion of the families served by one's efforts. One could, but I don't. I've seen the hubris sometimes involved in the choice. There's a micro-chasm of power there, and sometimes, every now and again, individuals are attracted to that power.

In all my training as an advocate for special needs families and as a parent and employee of the school, I've been told again and again that the key to communication is knowing everyone in the room has the well-being of your child at heart. Employees of the schools, after all, went into this profession to help others. They love children. They want to help you.

How I long to believe! It just hasn't been our experience here in Perry Township. I have yet to figure out what the benefits are of being stingy with services and occasionally ignoring the law completely; however, there must be some kind of payoff. It happens far too frequently. Perhaps, it's prejudice.

I know Rain Man seemed cute and cuddly, but all too often disability is hard to understand and downright repulsive.  Put down the pitchforks. Wait till you see the reality of the "playing in feces" stage and tell me how you like it. I loved him through it because I'm his mother. Others aren't so motivated. There's some slobbering that can be encountered on the spectrum and lots of potty trouble. Students who vomit intentionally can and do happen. These things don't bother me because they are our kids. They belong to each and every one of us, and so do the hangups. It's our problem to solve, not theirs. It gets to some people.

The disabled also remind us of our own frailty. The fragility of the human body is a fearsome thing to behold. Perhaps, the negative experiences I've had with administration can be traced back to their own fear of mortality. Maybe it's all this complicated and this simple. I can't be sure, but my faith in the law and humankind is failing.

As a mom, I've seen too much to believe in the innate goodness of man. Fiscal conservatism often seems to translate differently to different people. To me, it would include not wasting money, directing it to services that are appropriate and valuable (like Special Education) instead of to the things that get us elected and do little good. To others, and if I'm honest, most others I've met who claimed that label, it is simply not having to pay for something that isn't your responsibility. That's where every man's conscience comes in and where I get nervous. My kid is no picnic and one day he'll be a very large, severely disabled man with two-fisted impulsivity issues. How will these people receive him? When his autism has drained me, where will he turn for care? And will those people be as unreceptive as his school has been? I'm not optimistic.

Inclusion in Perry Township is not done well or with much effort. Children out in the general ed. setting find very little compassion or understanding when they are inappropriately placed with typical populations, and I wish it was only the kids I worry about. I've encountered principals and teachers who just disliked a child for their autism, saying it's "an excuse". That principal couldn't understand that it was a reason, not an excuse.

RISE Special Services has one separate facility for the severely disabled student who can't go to their home schools, and I'm seeing the push. The end of that safety net for all involved nears by the day. Parents don't know it's there because they aren't told. When something goes horribly wrong in the home school, they may find out by word of mouth, and then it's a fight to get them in there. Parents who need this facility and ask for it are told they are "warehousing" their kid. However, that same kid may have just arrived from an environment where he was strapped down all day as my son was, and then they tell me I'm ruining his socialization. Please.

Instead of comprehensive intervention, preschoolers are directed to satellite programs with little training for the teachers trying to run them. Are there good teachers? Absolutely. They came that way. The township had nothing to do with it, and those teachers do not get the support or supervision they need from trained and competent administration. Often, the administrator has less clue than the teacher! Students in that separate facility are frequently farmed out only to return again when it was too dangerous to keep them out with typical peers. Many continue through their home school and age out of inappropriate programs. Thus, the population of that school diminishes each year, and the law suits abound.

What does it all mean? It means that we will shortly have blanket inclusion in the townships, and the choices for parents who have children who get violent during melt-downs or self-injure will get limited to keeping them home for school which limits them further to five hours of very expensive schooling per child each day. There will be incidents. Someone will get hurt. Where is the difference there with institutionalizing the mentally ill? Where is the fiscal conservatism in pushing the severely disabled out of the schools altogether to educate them at home? 

Currently, Perry Township has three environments for special education; general ed. classrooms, satellite classes located at home school locations, and Rise Learning Center, a separate facility focused on comprehensive intervention. If all those fail, you have the option of home-bound instruction.

Someone, recently said to me proudly of Indianapolis Public Schools where inclusion is the only option, " The disabled kids are there, and everyone just had to deal with it." That about sums it up. Yet, IPS doesn't have a spotless record or a good reputation. Could it be that they are using inclusion badly just as we are? Throwing autistic students into the population and saying, "Go!"is not inclusion. Inclusion involves peer education and social supports. It involves intervention and accommodation. Further, sometimes those things aren't enough, and we end up warehousing the child in an inclusion classroom.

Perry Township has got to get a hold of itself. Nothing changes, unless we change it. Parents have to organize and get involved. Learn about real inclusion and the options available to your child. On the other hand, I hear Johnson County is nice. Plenty of my acquaintances have taken that option, just move.

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