It’s so true… most of the very best parents of autistic children are complete and unabashed rebels. Whoo-Hooo!!!
We are called to be parent advocates–also known as rebels–for our children. I have read a lot of books about parenting and autism and parenting autism. Some books have been amazing and have truly changed my life for the better. They’ve given me the courage to be a parent advocate when I needed to be.
But I’ve also read books that made me furrow my brows and think, “WHAT IS THIS DUMB-BUM SAYING TO ME ABOUT MY CHILD?”
“What planet is this turkey from?”
“Does this author even have a child on the autism spectrum?”
“WHY did they write this dreck and think it’s appropriate?”
This article shares one beautiful mama’s reaction to a book she disagreed with: Areva Martin: An “Everyday” But Disappointing Autism Advocate.
Four books you’ll want to learn from, rebel parents
In Jenny Mcarthy’s book Mother Warriors, I learned so much about rebel parents, those awesome parent advocates. I knew that I was a Mother Warrior after reading this book. I knew I was part of a tribe. Mostly I knew I was so happy to know that other parents didn’t conform, listen, or give in if they didn’t feel it was the right thing to do for their child.
I Am Intelligent was an incredible book with kick-ass parent advocates and an amazing woman who endured so much. Intense and excellent read!
Jon Morrow and his new blog Unstoppable, with his first post titled 7 Life Lessons from a Guy Who Can’t Move Anything but His Face, is an incredible story about a human being who was told he would die again and again. He’s still here and changing our world for the better. I find his work hugely motivational if you need that now.
One time I wish I rebelled but didn’t
I didn’t know I needed to rebel with our first medications doctor (after I finally gave in). He saw how stressed Michael was after more than a year of seeing us. He casually asked me about it, and I was thinking, “He’s like this all of the time.” He didn’t follow up with me, and I didn’t know to ask further. I didn’t know what I was doing, so I didn’t know to be a parent advocate for my son yet.
We got to the next medications doctor and he’s all, “Why are you living with so much stress and anxiety? That’s not optimal and we can definitely help Michael not live in panic mode all of the time.”
Once we got him genetically tested and on a new medication, our lives changed yet again, and we are still adjusting.
Please learn from my mistake in that experience . . . Michael was so stressed all the time, but I didn’t know there was something more we could do for him. I wish I had “rebelled” and said “This is so much for all of us each and every day. Is there anything more we can do?”
Even if you don’t get the answer you’re looking for, at least you asked. Hopefully the doctor or therapist has a seed that can grow into further helpful actions and treatments for your child, and thus your entire family.
One time I did rebel, and I’m glad I did
I think we need to rebel when something doesn’t feel right or when our child continues to struggle even though they’re supposed to be getting better. Or when it is so crystal clear we pretty much don’t have an option not to rebel. Like when our child says (this really was said to me), “If you want to see my true light and my true happiness, you will not make me go back to that schooooool.” (finished with a good loud cry)
So I rebelled against that school, even though they said they were doing what they could for him.
I just very simply and kindly stated that it wasn’t working for him and that it was completely OK. It’s not about them, it’s not about contracts, it’s not about egos–though those things sure do get in the way of taking full care of our kids sometimes.
Parent Advocate 101: It’s about our children and their well-being. That’s the bottom line.
I asked if there was any paperwork I needed to complete and we made our departure. Of course I needed to follow up with getting closure for my son and because we had been at that school for a few years. We had established strong relationships, so I emailed everyone separately and still see some of them today. 🙂
Rebellious things you can say when needed
Each of the following are taken from real moments of my life:
“Are we looking at everything we need to?”
“Thank you so much for your time.” Pay the bill if it’s reasonable, walk out, and never look back.
“Can you please look at how upset my child is right now? We need to take care of him first and then we can schedule a time to talk.” Help your child calm down, go where you need to, and email that person to schedule a time if it’s still needed. Boundaries are a great thing!
“My child is absolutely perfect right here and right now, thank you very little. We will be going now.”
This rebelling can be really hard work if we’re not used to it. If you need a little nudge, please say the following out loud until you’re yelling these affirmations around the house. You’ll get there if you believe you can!
You are powerful! Say out loud, “I AM POWERFUL!”
You have control! Say out loud, “I MAKE GREAT CHOICES FOR MY CHILD AND FAMILY!”
You get to decide! Say out loud, “I AM A POWERFUL PARENT ADVOCATE (REBEL) AND I MAKE THE CHOICES I NEED TO IN ORDER TO HAVE THE BEST LIFE POSSIBLE WITH MY CHILD AND FAMILY!”
There are tough things that happen to us and happen to our children. Life.
But no matter what, you do have some say. You can change the rules, and you can create new and more positive pathways. Because you are a rebel parent and your child is #1.
Huge love always,
Mica, proud parent advocate and rebel
Here’s a letter for when we don’t have to be a rebel, but gratefully will be. 🙂
And have you had to fight a battle where you and your child are better off because you fought hard? Share below so we can all find strength in your rebel actions!
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