Living with a Child who has a Disability

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Published Apr 18, 2016

Having a child with a disability changes things. However, what makes us different also makes us special. Check out a beautiful story of how a family can not only survive but thrive with a child who has a disability.

When people ask, “What’s wrong with your kid?, I have often wanted to answer “there’s nothing wrong with him, can I assume your struggle is with manners?”  I am repeatedly appalled by people who tell me he ‘doesn’t look’ disabled.  Disabled is a legal definition which has no requirement for how anyone has to ‘look’.

The truth is any child who is different has to learn to deal with their ‘differences’ – and every child has their own ‘differences’ that they have to grow into.  When it is something like a disability that is apparent (a child in a wheelchair, or with crutches or using a white cane) it can be easy for that child to be a target of bullies or teasing. 

There is no simple definition of most disabilities – thousands of pages have probably been written about any known disability. Autism, for example, has such a spectrum there is no way to talk about it except to describe the disability and its impact on an individual person, family or school.  

There is great value in writing essays to tell a story about a person who 'happens’ to be blind/in a wheelchair/autistic etc.  I would like to write about my son's experiences where his disability does and does not impact his life, to show disability as a part of daily life. The last statistic I heard was one in 68 children are being diagnosed with autism, it is important that more typical children learn to interact with people with autism as they are virtually unavoidable.

People with disabilities often do need accommodations – helping typical children learn to understand and accommodation is not only ‘okay’ but appropriate and also very valuable.  Helping people without disabilities learn to offer appropriate assistance is a positive thing.- not something giving my child an unfair advantage.

I use the language ‘typical’ or ‘typically developing’ to describe a person without a disability.  I don’t think ‘normal’ is a real thing or applies to most people.

It is important to help children and adults understand the specific disability of a person they regularly interact with.  Disability can be confusing, uncomfortable and even frightening to people when they don’t know what to do.

Also, remember some disabilities are more difficult to see.  You could look at my child with autism and not ‘see’ a disability.  I really am a good parent – but I have been faulted for letting my child have a tantrum when I recognize he is melting down.  I have been faulted for disciplining my child – more than once someone has said to me I shouldn’t punish a person with a disability.  In truth is, everyone's understanding of parenting may be different but I believe that all people can misbehave and they should be told not to.

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Chats: 2
Votes: 0

To say it in a way of "what's wrong with him" can come across as rude, I agree, however often I don't mind so much people asking about my child if they come across as genuinely interested. I think it is a good opportunity to educated people, and for my child to even give some wisdom to an ignorant person. I can generally tell the difference between someone I can explain this to, and someone who is actually being rude - to which I have been known to snap!

There is no normal, as you have said here, and I know so many children who are considered 'normal' yet they are badly behaved, have no respect, etc ...

Posted by littlebird on Apr 19, 7:48 a.m. | Like | Flag as abuse

Chats: 5
Votes: 0

Self advocacy is incredibly important for children with disabilities. It can be overwhelming to be the parent of a child with a disability. There's an essay called "Welcome to Holland" that discusses how having a disabled child is initially a shock, but turns into something really special -- not sure if you've read it? I'd recommend it:)

Posted by Jen on Apr 19, 7:40 p.m. | Like | Flag as abuse

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