By Marcia Hinds –Ryan’s mom
Autism is treatable and recovery is possible. If I can do it, you can too!
As parents we find ourselves in an exclusive group, the Autism Club. No one asks to be a member but become a member because of our kids. Only another A-Club member understands what it is like to live on Autism Island day in and day out. It’s exhausting and the personal anxiety, stress and isolation you experience is overwhelming. As much as we’d like to, we can’t give up on our children, because sometimes we catch a glimpse of the kid we know is in there.
Please understand that parenting by the regular rules doesn’t apply when you have a kid with autism. I was consumed with self-doubt. I wasn’t a bad mother. But part of me actually believed my son’s behaviors were my fault. At first, I was in denial. I tried to pretend everything was okay. If I admitted that my son had difficulties, I also had to admit I wasn’t doing my job as a mother correctly. My personal hell became worse when relatives, doctors, teachers and other experts couldn’t wait to jump into the chaos to tell me I wasn’t doing it right. Moms sometimes think the reason our children are out of control is because of the things we do, or don’t do, or maybe ate, or maybe touched, or maybe…
The list of mother-blaming reasons is endless. I wish that sentence was past tense. I say “is endless” because so many of us moms still feel like autism is somehow our fault. This is NOT your fault! Repeat that phrase over and over again until you start to believe it. Mothers who feel such guilt can’t focus on what they actually need to do. Guilt is not helpful and don’t get me started about denial. Guilt and denial held me back, but sometimes my anger over this impossible situation actually was helpful.
When I had nothing left to give, all I had to do was imagine that day when the psychiatrist first diagnosed Ryan in 1992. That was the day she said there was no hope, no cure, and no recovery. The doctor almost finished me off by adding that most kids with autism end up in a group home or jail. I used to reminisce about that day in the psychiatrist’s office when Ryan still needed more from me and anger was all I had. Sometimes anger was the only thing that motivated me. Anger and outrage kept me going when my son’s autism left me unable to breathe. Anger worked for me when I was too exhausted to get up another day and fight this battle.
I have been a member of the Autism Club for over twenty years and I have learned a thing or two. After reading my book and learning the details of what I did, many people tell me that it looked like I knew what I was doing, but I was mostly hanging on by my fingernails. Today, my son is living independently, with a full-time job as an engineer, and lots of friends. Not many people in his life now know that he was diagnosed with autism as a child. My advice to anyone who wants the same for their child is to trust their gut and do what they think your child needs even if others tell you not to. Listen to the experts and do what you agree with. You can do this! Yes, you will make mistakes, but U-turns are allowed. And never ever give up, until you find the answers to help your child.
Just keep going!
Marcia Hinds is Ryan’s mom and the author of I Know You’re In There –Winning Our War against Autism. This inspirational book tells how her family combined medical, behavioral and educational interventions to help Ryan. Marcia has a degree in sociology and psychology from UCLA and is a credentialed teacher. But, Marcia’s most important qualification is that her family beat autism. You can preview her book at www.iknowyoureinthere.com. Marcia is available for speaking engagements, media appearances, and interviews.