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Dear Parents – Do the Work

Dear Parents – Do the Work

Last updated on: April 17, 2017 at 9:12 pm by Dilshad Ali

Dear Parents – Do the Work 2017-04-17T21:12:40-04:00 Dilshad Ali

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This is Day 17 of the Ali Family #AutismTruths – April 17, 2017.

Dear Autism Parents (Is that even a thing? Can we say that?)

The only way you’re going to figure this out is to start talking, sharing and connecting. A lot of you have come to me over the years to ask about different therapies, government supports, medical treatments, where to find doctors, where to find spiritual support and on and on and on.

I wish there was a one-stop shop, an Autism Super Store, if you will, that could have aisles and sections that covered all the necessary basis. But, it doesn’t work that way. Things are better now and information much more plentiful and at the ready then when D was diagnosed more than 13 years ago. What hasn’t changed, though, is that punch in the gut you feel when your kid is first diagnosed, followed by that sickening feeling of what do we do now?

This letter isn’t meant to be a primer of the A’s B’s and C’s of what to do after your kid is diagnosed in the Autism Spectrum Disorder (ASD). There are much better websites that tackle that for you – like the Autism Society of America, TACA (to learn the latest in medical research and biomedical treatments to treat the underlying medical issues associated with autism) and yes, even the controversial Autism Speaks (specifically their 100 Day Kit on what to do in the first 100 days after your kid is diagnosed – man, where was that back in 2003?)

Check out the Autism Self Advocacy Network (ASAN) to hear what autistic individuals have to say about what is important to them – the roots of autism self-advocacy. Because all too often in conversations, research and discussions about all aspects of autism, the folks left out are those who are autistic.

More than anything though, what you’re going to learn quickly is that no one can tell you for certain what is the best course of education, therapy or medical help for your child. You are going to have to figure your child out and listen to him/her. Really listen.

You’re going to have to do the work. Plain and simple.

Because there are a million different things to try and a million different opinions out there on what’s the best course of action to help improve the life and health and build a system of support for an autistic child.

You’re going to have to wade in to your neck, stand on your tippy toes in the midst of fighting currents and work your ass off to figure this out, then refigure it and refigure it again and again and again.

Parenting is work. Parenting a child with autism is doubly, triply, infinitely more challenging.

Get on different Facebook autism support, research and parenting groups. Lurk around and read up. Then, ask questions. Lots and lots of questions. Connect with your local Autism Society chapter and see what seminars and training sessions they have to offer. Learn what an IEP (Individualized Education Plan) is and how to write a good one.

Learn about what your school system owes your child, and get ready to fight for it.

Learn about the diverse ways autistic children learn and communicate. Many speech therapists may tell you that if your child engages in echolalic speech (where they may repeat phrases or snippets of movie, TV and song dialogues over and over), it isn’t an effective form of communication. But for some, it is.

In school, autistic kids are often taught to have “quiet hands” (not engage in hand flapping) and to try and seek control over their bodies. But, maybe those body movements are necessary for an autistic person to help them regulate themselves. Maybe it’s a form of expression for them.

If your child’s verbal communication skills fail to take off, then research and figure out the best non verbal forms of communication for him/her.

The thing is, you need to listen to yourself in what you think is right for your child, and you need to listen to your child. I can’t tell you how many times that signs of distress, agitation, self-injurious behavior or full-on meltdowns were passed off as “just autism” in D by trained professionals instead of them trying to figure out the function of his behavior or if there was an underlying medical issue afoot.

Listen to your kid. Listen to yourself. Figure out who you trust for help and advice early on.

Then, do the work.

Love big.

Love deep.

Breathe.

Connect with other autism families. Because those who know, know.

Dig your heels in and get to it.

And, as your family travels this journey, actively seek happiness and forgive yourself.

Yours,

Dilshad, an imperfect parent who is still making mistakes, figuring things out and doing the work

Autism Awareness Month 2017

#autismtruths

Ali Family Autism Truths

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April 16, 2017

He Knew

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April 18, 2017 Lessons in Autism Land - Less of the Doing, More of the Listening

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