Expecting Too Much?

Unfortunately the conversation related below actually took place. And even though it was five years ago, it probably won’t surprise some parents that not much has changed. I am so very tired of all the school battles, yet this school year is starting off that way yet again. Maybe that is the school district’s strategy – wear down the parents until they just give up.

I said, “It’s taken six long, hard months, but I think Ashley is 99% toilet trained.”
They said , “I went to school to learn how to educate children, not attend to their personal needs”.

I said , “I haven’t seen Ashley progress on her sign language goals in the last three months.”
They said, “Let’s lower the bar so we can see success.”

I said , “Ashley has a profound hearing loss in her right ear and a moderate to severe loss in her left ear. Sign language is her primary means of both receptive and expressive communication.”
They said , “We can just talk louder.”

I said , “Ashley really enjoys being in the general education classroom. She is fully included in her childcare facility, and that has been a very positive thing for both her and the other children.”
They said , “Ashley will bother OUR children with the frequent strange noises she makes.”

I said , “I would really like Ashley to participate in the PTA program.”
They said , “OK, but she will have to be separated from the other children so she won’t distract them or detract from the program, and she will have to leave the stage after one song.”

I said , “Ashley is significantly visually impaired. Her only usable vision is 20/2000 in her right eye. I think she needs orientation and mobility services so she will have fewer accidents. The nose we thought was broken, and fortunately wasn’t, and the stitches in her lip were enough for me.”
They said , “She’s just clumsy, and she really uses her vision well.”

I said , “I would really like Ashley to start learning more academic things. She is in the 2nd grade, and I think we have worked long enough on putting pegs into holes. Why, just this past summer, I taught her to name all 50 states, to identify 12 complex geometric shapes, to understand many fingerspelled words, and to recognize all the letters of the alphabet – both upper and lowercase.
They said , “You really need to be more realistic about Ashley’s abilities.”

I said , “I would really like Ashley to join the 2nd grade regular ed students on their field trip.”
They said , “Oh, but then she would miss her speech therapy (or occupational therapy, or vision therapy). Plus, it would be quite an undertaking to get her on the bus, make sure she gets lunch, and deal with her toileting issues.”

I said , “Since we have had the same goals on Ashley’s IEP for the past three years, perhaps we need to explore different instructional techniques to help her learn”.
They said , “We’re just setting the bar too high for her cognitive abilities.”

I said , “Why do you let the other children bully Ashley and make fun of her?”
They said , “They’re just being kids. Don’t take it too seriously.”

I said , “I believe Ashley’s triennial was due six months ago.”
They said , “We have been so busy but will get to it soon.”

I said , “What are WE going to do to help Ashley learn and receive an appropriate education.”
They said nothing, and looked at me as if I had two heads.

If I didn’t have to homeschool Ashley ten hours a week (even though she spends six hours a day, five days a week in public school), I might have time to go on a walk through the neighborhood with all my children.

If I didn’t have to spend money on a private tutor, as well as provide 90% of the instructional materials for Ashley in her public school classroom, I might be able to take the kids to the theme park they love so much.

If I didn’t have to fight and make sure Ashley received ESY services just to keep her ‘treading water’ educationally, my family might be able to take a vacation one summer.

If I didn’t lie in bed every night and worry how I was going to ensure my daughter received an appropriate education and became a productive adult, I might have the energy to make those cookies for the PTA Bake Sale.

If my school district truly meant what they said in their “mission statement”, my daughter would be a lot closer to receiving a free and appropriate public education.

But perhaps the school officials were right – perhaps I do expect too much.

Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.

In addition to her job as a computer engineer and her single parent responsibilities, Deborah is president of a state-wide family support group for families whose lives are touched by deafblindness, and is a tireless advocate for all people with disabilities. She writes at Pipe Cleaner Dreams and her writing has also been featured in local magazines and newspapers. Ashley’s story has also been chronicled in a book by Jonathan Mooney titled Short Bus Stories.

Deborah

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