Behind starburst eyes

Autism is NOT a death sentence

on May 8, 2013

Just over a month ago C and I made cookies for his home school group at the YMCA to help promote Autism Acceptance. With how positive of a reaction we received from them I asked one of the people who helps to coordinate the Orientation for Parents of Children Recently Diagnosed with Autism at Grandview Children’s Center if they would be interested in having some at their next orientation. She spoke with the her colleagues and they said yes. So today I went and got more business cards for the packages I’ll be dropping off Saturday morning. I’m happy that they said yes to them as I feel they do have a positive message to them. So often I hear of parents being absolutely desolate about their child’s diagnosis, and I think our perception as a society needs to change about that.

Last year on C’s 8th birthday his father and I were not with him. The night before, I called everyone that was supposed to come and told them that we had to post-pone his birthday party. Why? He’d done NOTHING wrong. We had to cancel his party and leave him with his Nana because we had a funeral to attend. A close friend’s 23 month old daughter had passed away. Now that was something to be absolutely desolate about. Her’s is a place that will forever be empty at their table, the memories of that beautiful precious little girl are what her parents get to hold instead of her. That is a truly devastating loss. One that those two parents must bear.

But to perceive a diagnosis of Autism as the same level of tragedy as the loss those parents deal with every single day is in my mind an insult to both the little girl who will never have a second birthday, as well as to the child diagnosed! It is NOT a tragedy that one’s child has been diagnosed with Autism, it is not something they will die from. Will there be some areas of their lives that are more challenging because of how their neuro-pathways work? Yes. But that’s what parents are for, to help their children to thrive to the best of the child’s abilities. Now I understand that some people would argue that a child classified as “Classic Autism” or as “Low-Functioning” does not have the same level of abilities to function as a child that is classified as “High-Functioning” I’m not arguing levels of abilities, but I am arguing that Autism is not a death sentence and should not be approached as one.  Yes there will be times that are hard for both parent and child. There will be times when as a parent you might not be sure how best to help your child. There will be times when they are judged negatively by others, when your parenting choices will be called into question by others, but all of those statements are true for parenting of any child!!!

To mourn the loss of the child you thought you had, the one that won’t _______ because they have Autism is unfair to your child. They are still the same child as they were prior to a diagnosis. They still have feelings, thoughts, dreams, wishes, fears, hopes just like any other child. Will they need different kinds of help or parenting than you originally thought you’d have to provide when you learnt you were going to become a parent, perhaps yes. But our job as parents is NOT to dictate what they need, but to observe them and their ways of communication to understand what each unique child needs us to provide them with and help them with.

These children can and do go on to lead lives that are happy and fulfilling for them, perhaps it’s not your definition of happiness and that’s okay because it’s not your life, it’s theirs. As long as your child is alive, and happy what on earth do you have to mourn???

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6 responses to “Autism is NOT a death sentence

  1. I’ve always tried to tailor my expectations to the person. There is no point in trying to get someone to something they can’t. Children with autism are 100% capable but you need to meet them on their level but also not be afraid to challenge them or think that you can’t!

    Great post!!

    • Yes! Because when you see that each person is an individual the interactions with them are far more satisfying for everyone! What I have noticed is a trend in parents to be devestated because their child is not the way they would have picked as if the child were some toy they were given to play with instead of a unique individual that can have a happy life if they are given what they need by the parents to do so.
      So true, they are capable, and challenging any individual (with love and support) can help them to reach new heights.

      Thanks 😀

      • Although I am not a parent yet I think I can understand why parents would be devastated if their child did not turn out the way they had hoped. I guess it’s the lingering on that, that I find difficult. It doesn’t help that we live in a society that is still not properly set up to support children and their families. By having people like you share your experiences and getting involved in other areas as well I’m sure a lot of parents can see that things are not bad, they’re different but in a very good way!

  2. PK says:

    Great post 🙂 I don’t know if you’ve ever seen this post, but I thought you’d appreciate it:
    http://www.autreat.com/dont_mourn.html

    • Thank-you very much, I have indeed, and I love how well Jim Sinclair explains it! I’ve actually tried to convince a local children’s centre to use his article instead of “Welcome to Holland” in their “Parent’s of children newly diagnosed with ASD” because I feel it’s such a wonderful perspective!

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