Thursday, October 29, 2009

A letter to the system

With names and specifics removed, indicated by [bracketed text].

[City School Administrator #1] & [City School Administrator #2] -

I am writing you to alert you to a very serious problem in the City School's Special Education services.

I am the mother of a 10 year old student with autism, [msk], who is currently in 5th grade at [his current school] in a full inclusion setting. His disability is very serious, but because of a great IEP team he is able to flourish in this setting in a way that he didn't at a much more restrictive setting [autism specific school]. One of the key aspects of his success has been his IEP aide. [Msk] has a lot of trouble with communication and staying on task, and these are areas that his IEP aide directly manages. It is hard to over-estimate the value of his aide, yet twice in the last two months his aide has been replaced.

Without getting into the specifics of our current situation I'd like to talk about areas for systemic improvement as I see them. My son (and I'd guess most special needs students) needs stability and understanding. This is especially crucial in his relationship with his aide. The entire IEP team needs to be informed at the earliest possible time of any changes in personnel. We have been informed on the day of that the transition is happening. We need to know that these changes are not being made arbitrarily or for minimal cost savings, as they will have significant impact in my son's education. We need to be involved in the selection and training of any new aides, to minimize the disruption. There has been no visibility in the selection and no training for aides beyond what [his current school] has provided. My son needs to be introduced to his new aide before the old aide leaves and the aides must both work side by side during a transition period. Because my son must have an aide per his IEP it is the responsibility of City Schools to never leave gaps in his coverage, whether due to short term absences or aide replacement. This has not happened, and if it weren't for the flexibility of his current school in providing substitute coverage, my son would not be safe at school. All of these issues need to be addressed for all special ed students who have IEP aides.

I am sure this situation is not unique to our family. I know that there are special needs kids who are not getting the level of education that they deserve because their aides are poorly trained and are constantly being shifted. The idea that any displaced worker from City Schools could transition from office work to aide over the weekend, with no documentation of a child's needs, show the lack of importance given to the role of aides. I also think it show very little regard for the emotions of the special needs child. Because of the lack of communication I've seen with the school or parents, I wonder about the value being placed on my son's education.

A successful IEP aide is crucial to my son receiving a Free and Appropriate Public Education, as he is due by law. I am really happy that he is flourishing in a least restrictive setting, as again is his right. Without proper support and adaptations, he will not be able to attend a typical school. I really don't want to have to look into a non-public placement for him again. It is not his best setting and it harms City Schools by depriving them of a great kid and by forcing them to pay a private institution for his education.

I appreciate your attention to this situation.


[A BCPSS Parent]

Thursday, October 8, 2009

Sometimes it clicks

Last night, (on Maryland Public TV digital channel 2) I watched the most moving and meaningful and relevant documentary ever. It was called "Including Samuel" and was about a family's journey to understand what it means to have a child with a disability. Along with that acceptance, they found out about inclusive education and the disability rights movement. It's a journey that we've been on, although I think we got there on a different path. Their school system has been working towards inclusion for a long time, while it feels like we are blazing some paths, at least in specific schools if not the entire school system.

There's so much about this film that struck me. Even though Samuel was 9 at the time of the filming, disabled teens and adults were included and actually spoke for themselves. There was honest discussions from a sibling about how having a disabled brother brings him joy. Frustrated and overwhelmed teachers also had their say. The films showed people with profound disabilities honestly, without sanitizing the realities of their lives. I could go on, but I'm not sure it makes for an interesting post. Probably the best thing would be for everybody to watch this film, or at least go to the website about the film (where I got the image above).

There was one line from Samuel's mom that struck me - "Yes! I've felt that exact emotion!" She said that when she thought about all the things that the different therapists and doctors wanted her to "work on" with her son, it would take all the time she spent with him. She realized that would turn her into her son's therapist, and that in turn would prevent her from being his mother. Oh, I have so been there! Consistent rules between school, home and therapy are OK, but I want my son to know I love him unconditionally. At school he can have reward systems and points and other behavior modification. At home he needs comfort and he needs to be able to trust us. I'll read with him if he'll let me, but I will not torture him by making him constantly talk about what he's reading. At home, there's space for him to veg out and play on the computer and play with his siblings and draw and make music. These activities are not therapy. They are life and existence and comfort. They won't be eliminated from his life.

Monday, October 5, 2009

How cool is that?

So, here are some way cool pictures by msk

Anybody recognize Drummer Hoff? Don't feel bad if you didn't. I had to ask myself.

Friday, October 2, 2009

Sounds about right

So, Grandpa visited for a while last week. In the group mail he sent out to talk about how the trip went, he described msk as "still noticably autistic, but making strides in socialization and remaining very cheerful." Reading this made me feel good; it had been a nice, low-key visit.

In the past I've felt kind of guilty that people's assesment of msk always seemed to get on my nerves. I'm talking about the occasional visitor, not strangers in a store or the people who really get to know him and us over time. Somehow, regardless of what they say, it seems wrong. Sometimes they minimize his disability - "in a few years no one will think of him as autistic, they'll just think he's a unique individual." That seems unlikely to me, and besides, we live in the now, not hoping for the future. They exude pity - "oh the poor thing; how hard for you; I'm praying they'll find a cure." Actually, it's our normal day to day life, and I've come to terms with it and am generally pretty happy. Those are the typical statements, at least from friends. I know they mean well, but they leave me feeling frustrated and misunderstood.

In contrast, my dad's description seems simple, to the point and accurate. I smile when I think of it. And he sent it out to the whole extended family. As my high school student says - Epic Win!