Wednesday, January 19, 2011

100 Days

In Kindergarten my children counted the first 100 days of school. As Summer gave way to Fall and that chilled into deep winter, it initially came as a surprise how long the countdown took to reach the goal.

Echoes of that early countdown is something that has remained with me, in part because the day arrived in the season when we've now begun to review our children's progress at school — reports cards have been issued, we've thankfully had the holiday to recover from the crescendo of C.S.'s anxieties that lead up to December, and sometime near the end of January, I have finally exhaled my bated breath and recall that we're only about half way through, around 100 days of school. And so I begin my review, much like the media after a President's first one hundred days in office.

This year my big question is, have the new policies we've enacted made a positive impact? For that, I need to sum up those various policies:

IEP: Of course that's the element that is most directly related to school policy and my son's course through the year. He has an IEP once again and having it has made a colossal difference. Reinstating an Independent Education Plan for C.S. has been key to his personal success — but then it does cast light on the broader policy of mainstreaming.

If there was an ideal candidate from the Autism Spectrum for mainstreaming, he was it. Like high-functioning Aspergians, he excelled in academics, but unlike this typical group of atypicals, C.S. had a strong desire to engage socially, he could be charming and he experienced empathy — there was plenty of existing foundation material on which to build a bridge between the typical kids and this atypical one from the Spectrum. But, during the PPT at the end of his Kindergarten year, it was exactly these traits that the Special Education team cited in order to dismiss him from receiving services.

And my son was abruptly dropped into the fast running currents of the mainstream. We jumped in after him and held him up until we learned to navigate their system. And though we've managed to have him reinstated, it is a system I could never trust again, because at that time he had been on an IEP for three years and even with their training, the team chose to recognize, not everything we all had up until then, but only the one thing we had missed, the technicality — we did not have a diagnosis for him. And so I look at his most recent IEP (all 23 pages of it) and marvel at the results, results made possible by our investments to secure a diagnosis and hire an advocate. And once dispatched, the crew was making marvelous progress. But I can't forget how close we came to failure.

So, I sit here and ask, why would our school system not act before? Why did it come down to this. And the only answer I can find, from every angle I can see, is, it comes down to money. Mainstreaming saves the school system money, not only because they don't have to run separate special-services program, but also because, when it comes down to saving our children from pain and heartache, parents will pay up.

Fight And so we chose to fight. We secured a diagnosis and used this to fight the school system. We forced them to recognize what their own reports illustrated as something other than a liability, but as a call to action. Fighting is hardly the ideal way to build community, but obviously, it was required. What made this so difficult was that this was the same school system, many of the same children and the same community that had so embraced my son's differences with support, caring and understanding in his preschool years. We have a very special preschool, TECEC, that provides public assistance for children with needs and accepts "model students" into the school with private tuition to act as role models. And this school, managed by many of the same school administrators that manage his elementary school, has successfully built a culture of inclusion that benefits all the children. Our son's needs were identified, he was accepted into their program, IEPs were written and from this wonderful experience, we knew we could build such a partnership. It is unfortunate that such a relationship could not continue and we were forced to fight instead.

And so, we have also used this diagnosis to embrace the support the autism community extends to all their members, because that desire to help these children succeed, that caring and understanding and just being welcomed into a community and receiving such support is that important.

Grow and Share These models of success, TECEC-our preschool and Autism Speaks, led me to believe that I might also succeed in building a small community, if I found willing members. I know they're out there. I've spent the past year trying to share the knowledge I've gained with others who have found themselves in similar situation, to be supportive, to offer understanding and to introduce people to each other. I've not had tremendous success. Building up something takes time and effort and all sorts of expenses. But I'm determined to keep trying. I suppose my decision to blog is part cathartic exercise and part of this new sharing policy of mine.

Alternatives I see a child in my son's class floundering miserably without a para, but he's so clearly in need. I tried to convince another mother who spoke out against this boy, that he was not a bad kid, that he simply needed help and was not getting it. But on the other hand, I completely supported her feeling of resentment. Because, by not addressing his needs and not assisting him to function better in the classroom, her child's needs were being ignored too.

Then there's a family's like ours, who fight for our child's needs and demand expensive services. The more general refrain I've overheard about people like us is that mainstreaming kids like ours is placing a burden on typical children or draining funds so that there are none for gifted programs. And I can see why people might perceive us to be the trouble makers here, because obviously we're the ones fighting. But, I wouldn't be surprised if these parents were getting ready to jump in and fight too.

But believe me, accepting my special needs, atypical child into the ranks of attendance is hardly what it takes to be "inclusive." These expensive services may require funds, but they were a cost savings to the public school programs. Its not the funds that should cause concern. Of more concern is that our elementary school's irresponsible acceptance of an inclusion policy without building the culture required to make it a success is creating divisions instead, divisions that actually cost less but that will cost all our children their feeling of success. That is an expense I think no parent can endure.

That's three big strikes against our current system of mainstreaming. And so, even though we might have to forgo state-funded services provided to help mainstream students, my husband and I have been considering the expense of private schools as a necessary alternative for our children. Fortunately, C.S.'s scores on many of the testing he underwent to secure his diagnosis are impressive to institutions that focus on academic excellence. And so we are seriously considering some expensive alternatives to our public school's policy, ironically because I am so certain that in a truly inclusive community, he would mainstream beautifully and achieve his full potential.

Silver Lining: I recognize that mainstreaming can and could work for my son. I recognize that an inclusive community is a real possibility. And I still hope to find it for our family.

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