Sunday, December 9, 2012

Parenting and Children with Special Needs

I've been asked to give a talk at my church about children with special needs. Since I compose my thoughts best through writing I thought I'd plan for it by writing here.

This topic is incredibly broad. It's almost impossible to decide what to broach first. It's like asking, "talk about parenting" or "talk about all the different children and their parenting needs."

Children are children
The label "special needs" implies that some children are normal and some are not. There is a mental line we tend to draw between the two that easily sorts children for us. But let's be honest- no child is "normal". Every child has his or her own quirks, strengths, special skills, and areas of concern. My husband is constantly amazed/frustrated that child development isn't a clear science- how are children so different? How come ours didn't walk until 14 months and his niece walked at 12? And that kid we saw on the playground- he was walking at 11 months!

What's important to keep in mind is that our children, the children in our schools, our communities, our children first. When you think of the characteristics of your child you think of what makes them laugh, their smile, what makes them cry, when they need a hug, what their favorite toys are, or what they need to fall asleep at night. Whether or not they are a child with a disability doesn't change those characteristics. Children are still children, with or without a label. Sometimes we make the mistake of seeing the disability and not the child.

Whenever I read the Holland story I find myself tearing up because I've watched so many parents go through this journey. I can't begin to comprehend it myself, and I get the benefit of knowing the child first in the immediate moment. I get to know the amazing child where they are at this particular moment in time. Not being their parent I don't experience a loss of a dream, I just get to focus on the child's current strengths and needs.

Parenting in public
One of the aspects I think must be the most difficult in parenting a child with special needs is the outside world. Even with a typically developing child I experience the judgement of other parents. Why do we do that to each other? Little Lipstick melted down in the grocery store a few months ago and not one but two people, complete strangers, told me she was spoiled. They didn't know she'd skipped her afternoon nap, had been sick, and was at the end of a very long day. I felt awful. I never wanted to go into public again. I was torn between wanting to stick my daughter in a corner and let her cry to prove to strangers that she wasn't spoiled, or to cuddle her and tell the strangers to go stick it. That was once and it still bothers me.

Children with disabilities have an even more difficult time in public. Grocery stores are overwhelming places. There is noise, signs designed to get your attention, strangers, people not observing personal space, food you aren't allowed to eat, and distracted parents. Even for children with learning disabilities grocery stores are demanding. Trying to navigate the strange place, read faces, compensate for difficulties in remembering what your mother just told you- it can be too much. Meltdowns too easily lead to judgement and I've worked with many parents who feel trapped in their own homes, scared to go out because of what others may say.

The public is a harsh world. I've heard of people making business cards so that when people judge their child's tantrums they can hand them a card that says "This is Johnny. He has autism". We as people must be nicer to one another. Withhold our judgement of the parents in the grocery store- we never know the true story behind each parent's struggle.

We also must be careful to never blame the parent for the disability. A child doesn't have an intellectual disability because the parents didn't teach her the letters. A child isn't autistic because the mother didn't provide the right structure and love in the house.

Accepting the disability:
When I worked in kindergarten special ed I was a part of a team who would tell parents for the first time that there were concerns about their child's development. It is awful to sit down and broach these concerns with a family, particularly when the family has no idea- it is the oldest child, they are not around other children very often, and they do not see their child's characteristics as different.

Accepting the disability can be difficult. I've watched many parents struggle with it. They worry that the label will mean that the school will write off the child, that people will have low expectations, that giving the child the label will give them the disability. They worry that the school or doctors doesn't know the child like they do- that the school is seeing something that isn't really there.

These are legitimate concerns. They can't be overlooked. I have seen children wrongly identified by a school who was too quick to push the paperwork through. But I've also seen children struggle without help because the parents were not ready to accept the label. It's always heart breaking to see a child who could be so much farther along than they are because they didn't get the help they needed early on.

It's important to remember that the label doesn't change who the child is. The same child who goes to bed the night after you sign the paperwork is the same child who woke up that morning. The child himself doesn't change. The services that are offered to the child change, but nothing should change the relationship the parent has with the child, who the child is, and what the parent's goals are for that child.

In many school systems the label can give your child what your child needs to be successful. It gives your child additional attention, additional resources, access to physical therapists, occupational therapists, additional technology, additional legal rights, additional data collection and monitoring than the typical child.  These are not bad things.

The important thing to remember with the school system is that you don't have to sign anything the day of the meeting. You can think about, take a copy of the paperwork home. You can bring your own support systems to the meeting so that it doesn't feel like you against the school. (And it shouldn't ever feel that way). You are a part of the IEP team, the most important part in  many ways, and you have a voice at the table. There is a page on the IEP where your concerns can be voiced. Anything you want can be added there.

It's a topic I could talk forever about, but the broadness of the topic almost has me at a loss for words- where to begin, and when to finish. There is so much to say. Yet the most important thing to remember is that children are children. The children in our community are our children. We must treat them like we do all children, including them as we would other children, considering their preferences and needs while still maintaining the expectation that they are a part of our community, and withholding judgement from parents.

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