by Marcia Hinds – Megan and Ryan’s Mom
When you hear the words “your child has autism” everything changes. Autism Island is extremely overwhelming, and difficult to navigate on your own. But with hard work and perserverance you have the power to change your child’s future. I wrote my son’s recovery story called I KNOW YOU’RE IN THERE to save you time and keep you from making some of the mistakes I did. But I’m warning you, autism is not for sissies. This is the hardest thing I have ever done.
When you combine medical, behavioral, and educational interventions our children can reach their full potential. You need the right doctor, doing the right things, in the right order, giving the medications for our children to improve or fully recover. To make things even harder the medical treatment alone is not enough. Children with autism also need a focused rehabilitation program to catch then up on all they missed until they start to learn like typical children. We used our own version of Applied Behavior Analysis (ABA) with a little RDI and Son-Rise thrown in. Any rehab program works once an individual’s immune system starts to function better. So chose the one you like (e.g. ABA Floortime, RDI, Son-Rise, TEACCH) and stick with it.
After we started ABA behavior therapy, Ryan’s inappropriate behaviors increased. That’s when things got really bad. Ryan began hitting, biting and pinching us. I wasn’t sure we were doing the right thing but we kept going because I didn’t know what to do. Once my son realized we weren’t giving up, no matter how hard he tried to make us, the difiance stopped and things really improved.
Every parent must learn how to work with their child. That way they can address every behavior and every learning issue as soon as it surfaces, when it surfaces, and every time it surfaces in multiple settings. Mary Barbara has free ABA training and videos on her website https://marybarbera.com/ . Mary’s book called VERBAL BEHAVIOR at https://amzn.to/35aRV74 is also a good idea.
Another great instruction manual with ABA drills is by Catherine Maurice called BEHAVIORAL INTERVENTION FOR YOUNG CHILDREN WITH AUTISM. It becomes affordable if you find a used copy online. Her other book called LET ME HEAR YOUR VOICE really helped me understand how ABA worked. ABA is basically good teaching. Catherine’s book taught me to reward the behaviors you want to increase and try to ignore (whenever possible) the negative behaviors you need to eliminate.
Catherine was generous with her time. On the phone she gave me the best piece of advice I ever was given. Catherine said to use what Ryan loved or obesses about to teach him. For my son, that meant every lesson had to include one of the following: elevators, cars, computers, technology, sharks electric plugs or light switches. And it was also important for me to remember that all children love love hugs and praise, even if they can’t yet communicate that. When Ryan didn’t want to hug me, I would grab him and say, “I’m your mom. You have to hug me. It’s your job!”
We must learn the techniques to help our kids. And as much as we’d like someone to do this for us, no one is signing up to do our job. We can hire people to help, but the completion of this job must and fall to parents. Even if I had a magic wand and instantly corrected all my son’s medical issues, Ryan still needed to be taught what he couldn’t learn before. I would have paid any amount of money for some respite from the exhausting and full-time job of teaching Ryan everything. Since this was more than 25 years ago, no one was doing ABA in Minnesota where we lived at the time.
So we learned the techniques and did a modified version of ABA ourselves.That turned out to be a blessing in disguise. When Ryan didn’t know how to do something, school was immediately in session. His classroom was wherever we happened to be. We worked Ryan morning until night. I desperately wanted anyone to do this for me. Fortunately for Ryan, there was no one in Minnesota to provide ABA when we needed it.
We started ABA with Ryan by holding a training weekend for the people whom I thought would become his therapists. Most of the people involved in the initial training were not the ones we finally ended up with. It isn’t enough to want to help a kid with autism; it isn’t enough to be nice or patient or kind or loving. You have to be consistent, determined, and relentless in order to be effective with ABA.
When someone didn’t have the right personality or the stamina to make Ryan conform, I let them go. I felt uncomfortable when I fired one of these caring people who just wanted to help my son, but Ryan had to be the first priority. Not everyone could deliver ABA in a consistent, effective way. Ryan’s antics required an extremely positive attitude, perseverance, and the ability to outlast him. I knew how hard this was, because I couldn’t always do it myself.
Professionals can help and do provide respite, but parents must be the main ingredient in the teaching process. That way they can teach their children wherever they happen to be…at home, in the store, or at the park on the swings. ABA requires the child to connect a stimulus with a desired response, and the only way to do this completely is in a setting outside a therapist’s office. The response must be delivered immediately when that teaching moment happens. You must be ready to drop everything else to help the child form that connection each and every time it is needed, no matter the time of day or night. Medical treatment combined with ABA revolutionized my son’s world. However, most of the time my son didn’t realize we were doing ABA, because we used what he loved to make it fun whenever possible.
Unfortunately, any parent embarking on this twenty-four/seven assignment won’t have much of a life until their child reaches a certain behavioral level. My husband and I didn’t regain any semblance of a social life until Ryan was in fifth grade. It was necessary to sacrifice everything in our own lives to put in the time it took to teach Ryan what he needed to know academically, socially, and behaviorally. And for children the social is the last thing to come and the most difficult thing to teach. For me, it was hard to give up everything for years when his future remained uncertain. If I had known he was going to recover, I would have had no trouble keeping the twenty-four/seven pace.
Recovering a child is always a balancing act. Helping our children becomes our major focus and can take over our lives. When I look back at what it took for Ryan to recover, I was consumed, obsessed, and engulfed by all things autism. Where do you think our kids’ obsessive natures come from? The apple doesn’t fall far from the tree. I still have difficulty finding a balance. Even though our family escaped from Autism Island, autism still significantly affects every member of our family
My new challenge is to balance fighting the war against autism with helping other parents. I had to write Ryan’s story to help these families that were living in this hell. However, it seemed to take forever for me to write it. There was no work on the book when I helped my daughter with her fixer upper condo or when I helped Ryan find his first apartment. My kids continue to come first before anyone or anything else (even my ever-loving husband). I’m not sure that is the right thing to do, but it is how I balance my life today.
Sometimes, I feel guilty because Ryan is okay and having a wonderful life. This should be the outcome for all children who are ill with autism. I often question why some of our kids who have amazing parents and do all the right things don’t fully recover. Why does it take longer to repair some of our children’s immune issues while others respond immediately and profoundly? Could it be that their children’s immune systems are just too compromised? Or were their children older by the time they found appropriate medical care, and it took more time to teach them the volumes of things they missed? Or was the doctor working on their child’s immune issues not addressing the root cause of the problem or stopping and starting the meds like some of them do? Did these physicians give the medications that were needed? And were the medications been switched when a child built up a tolerence to a medication. Were the rehab therapies done in the wrong order, so the prerequisite building blocks weren’t there? As of yet, we don’t know the answers to these important questions. I pray that one day we will.
NOTE FROM MARCIA HINDS – Megan and Ryan’s mom:
Ryan became an aerospace engineer, because he received proper medical treatment combined with behavioral, and educational interventions. To preview my book, “I Know You’re In There – winning our war against autism”go to Amazon or my website www.autism-and-treatment.com
Contact info for Marcia:
Phone: 805 796-8213 Email: firstname.lastname@example.org for the interventions that helped my son the most and for help finding a doctor in your area. There is more info to help on my website.