Finally, the day you’ve anxiously waited for has arrived. You’ve just given birth to a beautiful, healthy child. As you and your partner stare in awe at your newborn miracle you reflect on the past several months. The worry, the nausea, the fatigue, the stretch marks… seeing that face erased it all.
You leave the hospital to start your new life as a family, filled with excitement and anticipation… and of course the trepidation of first-time parents’ drive home.
It doesn’t take long before your giddiness wears off, replaced by the fog of sleepless nights, endless loads of white laundry, and of course gratitude.
Months pass, and one day you wonder if something is wrong. Your child has become less interested in interacting with you, and doesn’t want to be held. You question your judgement, but vow to keep an eye on things.
This is your first child, after all.
Later, you notice that he appears to be mesmerized by a fan, and sometimes stares into space as if seeing something that isn’t there.
You begin to feel like he barely knows you exist, and he cries incessantly. To make matters worse, you can’t console him. Your world has been turned upside down.
More time passes, and after endless appointments, you hear the words you prayed you wouldn’t.
“Jake has autism….” An agonizing emotional hell ensues.
Your child’s name is put on a waiting list where it stays for an unthinkable period of time. You look at him and wonder what the future will hold. You try for your partner’s sake to soldier on. You decide to push the diagnosis as far down as it will go. It bubbles to the surface again and again… relentless. Tense conversations occur between you and your partner. Family members rush in to offer support.
You wonder “what you did wrong?”. Why this happened to YOUR child… and to you?
Months go by. In the meantime, you spend hours and hours online, almost obsessively; joining groups, researching, reading countless articles, and blogs. You vow to do whatever it takes to give your child a good life.
As your child’s Mom, you begin to feel utterly useless. You’re given referrals to various professionals… you talk to friends, and speak to other parents.
“I, your own mother, who gave birth to you, am powerless to help you… What did I do wrong?”
You patiently wait and wait. You pray that today will be the day that you’ll get the phone call that will bring blessed relief. Soon – yes soon, Jake will get the therapy he so desperately needs to make him better. In the mean time things get progressively more difficult at home. You’re thrown into a chaos that is draining emotionally and physically beyond anything you could have possibly imagined.
Jake’s behaviour seems to be getting worse.
You and your partner talk about discipline. You take away electronics. You demand apologies for hitting. His distress is palpable. It was palpable before you took away his iPad. You wonder why he’s not listening… why he’s not learning from his mistakes…
… why he’s not “trying to behave.”
When you go to the park you see other children … “normal” children. You hate yourself for how you feel. You imagine their happy lives, and the joy their parents must feel doing the simplest of things with them. You imagine what it’s like to play, and laugh together … to cuddle. You imagine your little family going out for ice cream, giggling together as it runs down Jake’s chin in the heat of the summer. Some days you wish you could run and not look back. Not that you would. This is your life. This is your child, after all.
Today you’ll get that phone call, you tell yourself.
In 2017, I surveyed 150 parents of children with ASD asking what their biggest challenge was.
- 147 indicated it was their child’s difficult behaviour. The majority of their children had been in traditional therapy.
- The second biggest challenge was worry about their child’s future.
Can you relate to this?
I dug deeper and interviewed over 40 Moms. I’m an ASD Mom myself. I’ve been in the trenches. I “get it.” (Speaking of trenches, did I mention the fact that Moms of ASD children experience stress similar to combat soldiers? I’ll save that for another day.)
In my interviews, most of the Moms I talked to internalized their troubles. They felt tremendous guilt and shame. They felt sub-standard … marginalized. Despite the fact that no one supported them and their child had been given their “blocks of therapy,” they felt like they ought to know how to manage. This was their child after all… the one they gave birth to.
In my humble (yet experienced opinion), these Moms have collectively experienced a “kick me when I’m down” experience.
Why does our government’s approach leave the most important people in the child’s life largely out of the equation?
Why are we hell-bent on trying to “fix” this child while giving his or her own mother the unspoken message that she isn’t qualified to help?
We are facing an epidemic of children who are misunderstood, and parents who haven’t been given information that is forward-thinking or solution-based. The results are tragic. (There are there too many heartbreaking news stories to prove my point.)
Sister, I’m here to tell you that you did nothing wrong… you did your best with what you had. You did what you were told to do. Your power was taken from you. I want to help you get it back. If you’re an ASD Mom I’m taking a stand for you.
I believe there’s a better way. One that puts Moms back in the driver’s seat – not the back seat. And I don’t think that these children need to be “fixed.” I think we need to re-think our approach.
I quote Dr. Barry Prizant, one of the world’s leading authorities on autism, and author of his hot-off-the-press book, Uniquely Human; A Different Way of Seeing Autism.
“Here is my central message. The behavior of people with autism isn’t random, deviant or bizarre, as many professionals have called it for decades. These children didn’t come from Mars. The things they say aren’t – as many professionals still maintain – meaningless or ‘non-functional’. To help them, we don’t need to change or fix them. We need to work to understand them, and then change what we do.”
Amen, Dr. Prizant.
I do not believe that the “gold standard” approach to treating autism will give your child what he or she needs to succeed in life. It definitely will not get to the root of the problem… to give your child the ability to think, and problem solve… or to be flexible.
Dr. Prizant goes on to say that,
“Some of the most popular therapies make it their sole aim to reduce or eliminate behaviours. I’ll show how it’s better to enhance abilities, teach skills, build coping strategies, and offer supports that will help to prevent behavioral patterns of concern and naturally lead to more desirable behavior.”
I say enough of trying to fix these children (thank you Dr. Prizant). Let’s begin training parents to understand the “why” behind their child’s behaviour… but even better, to learn to “guide their child’s thinking…” to learn how to connect on an emotional level, and to take back their rightful place in their child’s lives!
This is not your fault, Sister.
The reason for your child’s behaviour is a result of his overwhelm and frustration. This frustration is caused by the “wiring” in your child’s brain.
When you learn to understand what’s behind the behaviour… and learn to shift how you are showing up … magic happens.
And, the best news of all? YOU are the most well suited to learn how to do this! After all, your child will be with you as long as you walk this earth. Who has more of a vested interest in your child than anyone else?
Will that therapist be around years from now to help you out? I doubt it.
Does that therapist know your child best?
No. You do.
This is your child, after all.
I was a very fortunate ASD Mom. I found a parent-based, developmentally-focused program that taught me through working with a trained coach why I was in the predicament I was in, and how to change it. I learned how to take back my power as a parent and along the way discovered that I have both an ASD child and husband. I now have the good fortune to share what I know with you and other Moms through my program, Lemons to Lemonade Better Behaviour Bootcamp.
For more information on my program, Lemons to Lemonade Better Behaviour Bootcamp visit www.lemonstolemonade.mom/bbb
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