Wednesday, April 14, 2010

perspective

I occasionally check in with this blog because I love getting parents' perspectives on children with special needs. The authors' wonderful stories and reflections about her child with Cerebral Palsy help to remind me that the children we work with are part of a family and a community. It keeps things in perspective- our children's struggles and delays do not just impact them academically, but also make going to the grocery store, or through the airport security line, a new adventure. As educators, sometimes what we believe to be the whole picture from our view inside the school is just a small piece of the puzzle.

Yesterday her post was about parents who blaming themselves for their child's special needs. This touched a nerve in the community, because parent after parent added to the comment section, sharing their own guilt and concern for what may have caused their child's disability. Reading each confession about the pain these women feel, the guilt, the analysis they live with every day, the what if questions, the blame they place on themselves, was heart breaking.

Some mentioned doctors who questioned their prenatal drug use, assumed they had not taken the right amounts of folic acid, or berated them for actions the parents never did.

Today I sat at a large conference table with about 10 members of the school staff and 2 parents. We wanted to discuss our concerns for their child, and consider the possibility of special education testing to determine whether or not the child has a disability. I sit in these meetings at least once a month, if not more often, watching the parents faces as they listen to 10 people, most of whom they have not met before, analyze their child's social, emotional, and academic skills.

Most of the time at these meetings we're looking for pieces to a puzzle. We're filling out paperwork and must be able to show a clear picture of the child. We analyze and re-analyze the child's actions. Question the child's performance in church, unstructured activities at home, the park- how are bedtime routines, eating routines? Does the child follow directions the first time you give them? Has the child been in counseling? Have you, as a family been in counseling? What about birth trauma? When did you notice delays? What did the doctors say? What is your child's diet? His bedtime? Why don't you put him to bed earlier?
I've heard people suggest parenting classes more than once at these meetings- just wanting to rule out whether or not the child's difficulties at school come from lack of routine at home, or from some other underlying cause.

We're only trying to do our jobs- fit together pieces of the puzzle so that we don't miss anything. Everyone at the table ultimately wants to help the child, and knows that the only way to do that is to make sure every Evaluation Report is as thorough as possible.
Still.
I can't begin to imagine what this feels like as a parent, particularly a parent who is already wondering if they have caused their child's disability.

2 comments:

Jill Fisch said...

Very thought provoking post. It reminded me of the book that I am currently reading with my 10 year old daughter. It is called Out of My Mind by Sharon Draper. It is told from the perspective of a 10 year old girl with cerebral palsy but it is fiction. My daughter is loving it and keeps talking about how much she has in common with this girl and how surprised she is by that. I think it is really helping her to see people with disabilities as people first rather than as people with disabilities. I would highly recommend the book even though we haven't finished it yet and I don't know how it ends. I have heard that it is not a happy ending.

luckeyfrog said...

I think it's important to have data and comparisons so that a parent knows this is something that a lot of thought has been put into.

One of the teachers I've worked with does a great job of saying "This is something we have noticed at school. Do you see this behavior at home?" and really involving the parents.

It's also so important to make it sound like we're all on the same team, and not like it's the school versus the parent trying to convince them to the 'right side.'

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