The Road to Recovery Takes Time… Don’t Give Up Too Soon
by Marcia Hinds – Ryan’s Mom
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It is not like I woke up one day and BAM my kid was better. His recovery from autism was S-L-O-W. The road to recovery takes time. After my son was diagnosed, even I didn’t believe my son could get better or have any kind of life. Sometimes, the only reason I kept going was so I could tell myself I had done everything possible when I had to put Ryan in a group home.
- Kids do improve and some fully recover, because autism is TREATABLE!
Children are recovering from autism, and yet many parents and doctors don’t know this is even possible. The “experts” said my son would need to be institutionalized. But they were wrong. Ryan is now an aerospace engineer. But more important than, he has what I wanted most for him. My son leads a “typical” life, is happy, and has friends. Ryan’s recovery was not miraculous, but resulted from getting proper medical care. Listen to “the experts,” then do what they say can’t be done.
- There a lot of information out there and no one agrees on anything.
Don’t allow this frightening diagnosis overwhelm you. You know your kid best. You must learn to trust your gut. And stop looking for someone to do this for you, because no one wants your job.
- There is no magic bullet or instant fix.
I know, I searched everywhere for it. We want our kids better right away (maybe before lunch), but it doesn’t work that way. Our fears and desperation make us sitting ducks for the snake-oil salesmen trying to sell us the “cure of the week” for autism. If it sounds too good to be true, it probably is.
- Most doctors were taught autism is a disorder and there is no recovery
The good news is that an autism diagnosis no longer has to mean “Game Over.” The bad news is that most physicians don’t know this and finding the right doctor to help us still remains one of our biggest challenges. Your pediatrician may not know what you are talking about when you ask about medical treatment for autism. And after you finally find a doctor who treats autism, their protocol has to fit the subset of autism your child has. One mom told me they did extensive biomedical treatment without any success or improvement. But, she kept searching and after she found the right doctor for her son, her child went from only saying “yes” or “no” to speaking three word sentences and huge gains.
- Autism is complicated
It was not one thing that helped my son recover. It was a combination of many little things that caused his immune system to function better. Ryan’s health was restored by reducing the “total load” on his system. It also involved treating hidden viruses and infections. Because that was possible, he was able to learn what he couldn’t before. Then the grueling work of catching him up on all he missed had to be accomplished.
- The medical treatment only makes it possible for our children to learn.
Our children still need an intensive rehab program. That’s why there are programs like Applied Behavior Analysis (ABA), Floortime, Son-Rise, or RDI, Pivotal Response Treatment (PRT) and more. They all work if you keep at it! We used our own version of ABA with a little RDI thrown in.
- Some of our relatives don’t get it.
They think we are the worst parents in the world. Don’t believe it! Keep saying to yourself “AUTISM IS NOT MY FAULT!” Do that over and over again until you actually believe it.
- Keep talking to your child even though they doesn’t respond.
This was the hardest one for me. Ryan gave me nothing, not a look and a not a nod. Sometimes it feels like the lights are on and nobody’s home. But our kids are IN THERE! My son learning even though he couldn’t show me that. All I got was that blank stare. Don’t stop talking to your kid because they don’t respond. That is how all kids learn language. I didn’t realize the dramatic effect my constant chatter had until he was better. That was when I realized he knew things he learned from me constantly talking to him.
- Recovery is not always an uphill climb and took years
After two steps forward, Ryan would take one step back. Sometimes it was two steps forward, three steps back. On those difficult days I took a deep breath and told myself I would try again tomorrow.
- Improvement sometimes isn’t easy to see, since we are with our children daily
When our children grow taller, we don’t see the incremental changes. It is kind of like that with autism. I didn’t always notice Ryan’s gains. But, I never missed it when Ryan did something wrong. All it took was one good meltdown in the mall to forget everything he did right that day.
- Don’t Give In To Your Child’s Demands or Change the World for them
Without realizing it, our family avoided those things that set Ryan off. That worked in the short run, but prolonged his stay on Autism Island
- Parents can’t predict their children’s outcome by how they look or act now
When my son was still in middle school, my dream was that someday he could hold a job at McDonald’s and live independently. But I wasn’t sure that was possible then. I couldn’t imagine him getting through high school. When he was in high school, I couldn’t imagine him dealing with college. I never imagined his life as it is today. Don’t look too far ahead or autism can be overwhelming. Instead, concentrate on changing things one behavior at a time.
- Regression is scary, but is also part of recovery
When Ryan went backwards, it was hard to watch, and difficult to understand. I worried constantly. What if he didn’t come back this time? Sometimes it was impossible to tell if any deterioration in behavior resulted from a change in medication, a problem at school Ryan couldn’t communicate, or if he was about to come down with some illness.
- Trust your instincts and remember you know your child best
When you read my book about Ryan’s recovery, it may look like I knew what I was doing. But, I was mostly hanging on by my fingernails. The worst was when I didn’t have a plan or know what to do next. I learned to trust my instincts and just keep going even though I sometimes didn’t really understand where we were headed.
- You have to hang in there! Recovery takes time and a never-give-up attitude.
You have to be more stubborn than your kid. Unfortunately, some kids have immune systems that are seriously compromised and cannot be fully repaired. But, you will never know if your kid is one of the ones who will improve or even fully recover unless you try. But it is also important to note that equal effort doesn’t guarantee equal outcome. Each child is an individual and will respond to treatments and rehab programs differently. I know many families that worked as hard as I did, without the same results.
- God allows U-turns with autism treatment
I made many mistakes along the way. Try to remember that no decision is forever. Parents can stop any treatment or medication that is not working. The important thing is to never give up until you find the answers to help your child!
Marcia Hinds is the author of I Know You’re In There -Winning Our War against Autism. Her inspirational book tells how her family combined medical, behavioral and educational interventions to help her son. Marcia has a degree in sociology and psychology from UCLA and is a credentialed teacher. Ryan is now an engineer at a major aerospace company. But more important than that, he is happy and has friends. Marcia’s most impressive credential for writing this book is that she is Ryan’s mother and their family survived the autism diagnosis. Preview the book on Amazon or at www.autism-and-treatment.com . All profits from Marcia’s book go to spread the word that autism is a complex neuroimmune condition and is treatable.