I have this fear.
It is better when I talk about it.
You see… I am two halves of the same coin. I am a teacher. One of my eight years teaching was actually in special education.
I am a mother. One of my children has special needs and will be in a special education class for at least part of the day.
In this world of special needs, I find myself compelled to offer advice on IEP questions when my new-found friends ask them. I can’t stop myself. I can feel their anxiety. I understand their fears. I relate to their worries.
From a teacher’s perspective, the things I want for my child are almost unreasonable. Almost.
If Alexander went to school right now, he would be non-verbal. This is one of my biggest fears. He will not be able to tell me about his day. The twins, at age 3, with their muddled version of reality, can at least give me a inkling of their day. They can tell me if they saw someone or what they had to eat.
Once… I worked in a home for adults with developmental disabilities. One man ate, but had no teeth (they used to pull them when you were institutionalized so you didn’t bite people) and he needed his food pureed. I watched a grown woman put everything from dinner in one blender and puree it together into one disgusting blob. Then she put it in front of him and told him to eat it. She was his caregiver. And -- for the record -- I did not report her.
Will Anyone Report This Woman If She Does This To My Son?
I believe in inclusion. In our house, Alexander is included in everything. He eats at the table with us. He takes a bath with the twins. He folds his hands in prayer when we pray our bedtime prayers. He brushes his teeth when they brush their teeth. Would it be easier to just leave him somewhere while we did our bedtime our routine? YES. But that is not fair -- to the twins or Alexander.
Tonight, Alexander raised his hands up to hug his siblings. He turned the pages on a book appropriately. He held a spoon. He giggled when his siblings got into trouble. He is motivated to do things with them. Because he is included. It takes a lot of effort to make sure we adapt our day to include him in everyday activities. It takes a lot of time to make sure he is able to do these things. As a parent, I know my child will best benefit from this follow through in school. As a former teacher, I realize his teachers will probably hate me for expecting this.
Not only this, but Alexander will never be able to tell me if he sits in a classroom and stares at a wall everyday. (I’ve seen it happen.) Alexander will never be able to tell me if his teacher’s nickname for him is “Special Ed.” (The kid’s name was Ed... and, yes, I witnessed it.) Alexander will never be able to tell me if he was offered food orally before it was just “shoved in his tube.” Because honestly? If you are in a rush… no one wants to spend 45 minutes trying to orally feed him and then another 45 feeding him through his tube. **sigh**
I really want to put a video camera on him so I can see and hear what happens all day. That is how protective of him I am.
Because… Who will report people if they do something to my Son?
As a teacher, if a parent told me they were wiring a student to be in my classroom because they didn’t trust that I would do what was best for him or her, I would feel betrayed. I pledged my career to take care of students. As a teacher, it was my mission.
Today, there is no acceptable policy for me videotaping my son’s classroom all day. If I were in an IEP meeting today, I would request inclusion for as much of the day as possible. I would request it in writing. Either hours or specific times. I would request a written note for every time my child was excluded from an activity that he should have been included in. (As much work as it might be to include Alexander, writing a note of explanation is more work.) I would request a log of how much food was given orally. And how much was given through the tube. I would want a private aid with Alexander at all times due to his seizure activity. I would want as much PT, OT, DT, VT, ST, every stinking Therapy we could get. You know why? Because they work. Today... Alexander sat for 2 minutes unassisted during PT. Several times.
Teachers will hate me. It would be better if I could have a video camera. Because I can’t trust that this won’t happen.
I’m scared for my child who doesn’t speak for himself.
What would you do? Do you trust your school? What if your child couldn’t speak? What would you want in an IEP?
** PS: I don’t want to put limitation on Alexander. God can do all things. ut, I am also a realist. There are times when it is ok to embrace the life you might have.**
Kristen @ www.alittlesomethingforme.com
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