Wednesday, February 20, 2013

I Am The Expert...

Parents of autistic children - indeed, parents of all special needs children - get bombarded with "experts" these days.  People who produce "studies" about the "causes" of autism - which never turn out to be actual causes - claim to be experts on autism.  Doctors offer solutions, diagnoses, and claim to be "experts" in their fields.  Therapists claim to be experts on how to deal with my child.  Even some autistics - certainly not all or even most, just a small but vocal percentage - claim to know my child better than I do.  This leaves many parents of autistic children feeling as I have from time-to-time, that I must not be able to teach, understand, or relate to my child because I am not an "expert".  Because I don't know autism as well as they do.

You see, two years into this journey has taught me a thing or two.  We would never assume that a parent raising a NT child cannot know how to best parent or make decisions for her child, so why would anyone do so with special needs children?  NT children aren't clones of their parents by any means, so I would argue that having NT children is no guarantee of being on the same page as your children, either.

It's time to call some BS, people.  You see, my journey has led me from being a scared mom when I first heard "significant global delays" and, eventually, "autism" in relation to my child to feeling like those words no longer scare me.  My boy is just my boy.

You see, someone else might be have a lot of knowledge in treating autistic children (doctors and therapists).  They might know a lot about the experience of living with autism themselves (autistics).  I hate to break it to them all, but autism is a broad diagnosis.  There are exceptions to just about every rule with autism.  

So, while someone might be an "expert" in the broader idea of autism, I have to claim that - in their dealings with my child - I am the expert.  Granted, my child is kind-of (according to his therapists) a "textbook" autistic kid, but I am the expert in the very specific presentation and set of circumstances that is Jack's autism.  I am an expert in the type of autism known by the name "Jack".

I'm not an expert in your child's autism.  If you are an autistic individual, I'm not an expert in your autism.  Each of our lives and those of our children, while they might bear similarities, are all unique.  I can only claim expertise in my own child.  Each of you can claim expertise in your own child, or in yourselves.

That's not to marginalize anyone, mind you.  The other voices are definitely important.  Doctors and therapists can guide and suggest ideas.  Autistics can provide insight and their voices can - and should - be listened to and heard.  After all, they've walked in shoes similar to that of our children.

However, if Jack were NT, whose voice would be considered paramount?  Us, as his parents.  Just because my child is autistic doesn't take away that unique concern, understanding, and foresight into our child that being his parents provides.  It is my heartstrings that get tugged with each struggle and tear, not anyone else's.

But who is qualified to decide if a certain treatment is too much, if a certain approach is not helpful, or if a particular idea is right or wrong for your family?  Well, as the parents of young children, it is you - and only you - who are qualified to do that.  Once your child ages, he or she should certainly have a say, as a family would allow their NT children, but until then, what 4-year old would get to make decisions regarding his own medical care?

Don't let bloggers, autistics, doctors, therapists, or the average person on the street make you feel like you don't know autism.  You know autism as it pertains to your child.  You know your child.

How do I know this?  How can I be so brazen to assert that I am the expert in the flavor of autism that is "Jack"?  Because I have grown him in me.  I felt his first movements.  From the moment I knew I was carrying him, his life has been forever intertwined with mine.  His struggles and his joys have been my own.  I have rubbed his back and rocked him when he was sick.  It is I who gets up with him at night.  It is I who feels his pain during a meltdown and his joy in triumph.  I have held him tightly through shots, evaluations, and more doctors appointments than a small child should ever have to endure.  I have kissed him and loved him even after he hit and kicked me in a rage.  I have held his hand and shed tears when he was being wheeled on a stretcher out of surgery.  I have known him and connected with him when words could not form that bridge.  I know him better than I know anyone else on Earth.

Doctors see our children a handful of times each year at most.  Therapists see them for an hour or two weekly.  Teachers see them for a few hours each school day.  Another autistic person might have never even met you child.  It is you - you as your child's parent - who knows best, if you block out the outside noise and listen with your heart.

None of those other people feel a piece of their heart leave each morning when your child gets on the school bus.  None of them cry when they see your child in pain.  None of them have shed tears when your child has cried.  It's not that they are unfeeling people, but that you have that unique connection with your child.  You know your child better.

See?  You do know your child better!  Don't be afraid.  Don't fight it.  Don't let anyone make you feel otherwise.  Simply surround your child with love, be open to his or her needs, and trust that having a special needs child didn't simply erase good parenting instincts.  If you parent with love, acceptance, and an open heart, I can't guarantee that you won't make mistakes, but you will be led right more often than not.

I promise you this, my friends, that there is no one - and I mean no one - who is more of an expert on your child than you.



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Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 3.5-year old little boy on the autism spectrum.  After her only child was diagnosed at 24 months with autism and an alphabet soup of special needs, she began to write about life parenting a very young child with special needs with honesty, optimism, and as always, a touch of humor.  

When not posting here, you can find Jeanie at her regular blog, Reinventing Mommy.  She has also been featured on The SPD Blogger Network and The Oxygen Mask Project, to name a few.  To follow more of her ramblings and get the latest on her posts, like her on Facebook or follow her on Twitter!

4 comments:

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  3. Hi Author,

    Very well written by you that parents of Autism children are the only experts who really understands what's wrong with their children.
    Yes, mental experts also help a parent in minimizing the problem, but lastly only parents can support their Children Having Autism in developing a positive attitude towards this disorder.
    Every smart parent is an expert.

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