I’m not sure about you, but my Autistic son has more than one diagnosis. His doctor listed High Functioning Autism, Sensory Processing Disorder, and Anxiety, in that order. When I first heard his diagnosis I was so overwhelmed. I cried because I was so sad that my sweet baby boy would have to go through such a trial in his life. I knew this was a lifelong thing. You don’t outgrow autism. You learn how to cope with it. You learn to function in spite of the trial. But it doesn’t go away.
The first thing I did was contact someone to get therapy started for the autism. We continued therapy in earnest for many months. Things improved dramatically! But something was still off. We hit a point where the therapy wasn’t enough, or we hit a plateau.
Things at school were just too overwhelming for my boy. He cried, not wanting to go. And sometimes he dug in his heels and refused to go. The last week of first grade he refused to leave the house and missed the last three days of school. He missed all the parties and fun! And there was nothing I could do to talk him into going.
So I talked to the doctor and we started medication to help with his anxiety. I thought that medicating the anxiety was a little drastic, but he really was at a point that I had no idea what else to do. And I saw a big transformation! He was always a happy kid. But he worried and had to know where I was at all times.
I’ll never forget one day when we had a repairman over to take a look at the furnace compressor in the backyard. We were back there talking for 10-15 minutes, and my boy stuck his head out the door to check on me at least 6 times. It was distracting and annoying, even though I understood where it was coming from. It was so hard to deal with.
Once the anxiety medication kicked in, he mellowed out. He could be in a room alone by himself. He had always needed me in the same room, but now it was ok as long as I was on the same floor. And soon he was confident knowing I was in the house and didn’t have to check on me every five minutes. Whew! I was feeling like we had major strides! But then the breaking things started. And I knew we weren’t finished.
A lot of autistic kids have sensory issues. So autism therapy includes therapy for sensory issues, to teach them to cope with their extra heightened senses. But my son really didn’t seem to know where his body was in space. He would run into people in a crowd.
He fell off his chair at dinner so much that we started to put a chair on each side of him to keep him from killing himself. He hit walls, and kicked things, and broke things.
When we took him to an occupational therapist we learned that he was oversensitive in some things, but under sensitive in others. His body needed more motion to “regulate his internal motor” than most people. When he was desperate for input, he broke things. He didn’t mean to. But he felt a need to squeeze harder, jump more, crash harder, to feel more. So we started by making sure he was getting regular exercise that moved his major muscles.
Running seemed to really help! We discovered that sights and food were also something to help regulate his internal motor. Crunchy things sped up the motor. So when I needed him to focus on homework, I gave him pretzels. Drinking thick things out of a small straw calms him down. So when I pick him up from school, and he is feeling frazzled, I give him a pudding cup with a straw in the lid. He sees it as a treat, I see it as a tool.
Now that the summer is winding down, and fall is here, I see that winter will require more adjustments in our house. We have a big swing set in the backyard. In the nicer weather, it’s perfect to get some energy out and start moving muscles. But when the weather is nasty, we need an inside energy outlet. So I found a mini trampoline, and that is helping.
I’ve also discovered that aerial yoga swings can be substituted for therapy hammocks. So I am installing one on the ceiling of the basement. I’ll let you know how it goes. But regular hammocks really calm my son down. The squeezing, cocoon feeling really helps him. So I have high hopes for its success. And he has started taking a tumbling class that he loves! He has no idea it’s therapy, and I’m thrilled that he is having fun.
Each of these a-ha moments were steps I needed to take to help my son have all the tools he needs to overcome his challenges. Like everything in life, it was important for me to take one step at a time. And when one thing wasn’t enough, we needed to add the next thing. Only now that we are addressing each of his problems are we starting to see the boy emerge from the clouds.
He has progressed with each therapy. It’s wonderful! But I see some parents stop when one diagnosis is addressed. Or they assume the continued problems are just because the therapy needs more time. And for some that may be true. But for me, for my son, he needed coping skills for each issue. The autism therapy helped a lot. The medication for the anxiety helped a lot. And the OT (occupational therapy) helped a lot. Each was a needed component to help fix his internal engine, and bless him to overcome his challenges.
We are so far from the finish line. But I feel like we are finally getting a handle on things. And I would encourage you to keep going too. Keep trying, keep searching. If you are seeing something in your child that isn’t sitting right with you, ask questions of the professionals. That is how I learned about Occupational Therapy and began to understand that a sensory integration disorder was its own thing. And that it needed its own treatment.
I also highly recommend the book “The Out of Sync Child” by Carol Kranowitz and Lucy Jane Miller. I got mine on Amazon. It’s a step by step guide that teaches you what sensory issues are, quizzes you so you can determine if your child has them, and gives you next steps if you determine that they do. It’s amazing! I didn’t read it from cover to cover but skipped to what was relevant to me.
At this moment we are nearing the halfway mark in 2nd grade. And my son is happier than I have ever seen him in school. We chose not to homeschool him, even though he begged for it. But the experts in his special education program are such a support for me, that I knew for us he needed to keep working with them.
I’ve also learned to make some adjustments for his benefit. I usually go on several trips a year without my son. The last few years they have fallen during the school year. And last year my leaving was quite disastrous for us all. So this year I’m sending someone else in my place. I’m choosing to be here for him. I want this positive progress to continue. Even though I know there will be bumps in the road, the changes I can make to help him are making things smoother for everyone.
Abby is capable and caring. She is learning more about Autism and parenthood every day. Having completed training to be an RBT (Registered Behavior Technician) for ABA therapy she is beginning to understand her son. And even though she is the first to admit she makes a lot of mistakes, she is so grateful to be on this journey. She comes from a family with many autistic members. She invites us to join her, as she shares her adventures. She wishes to emphasize that Autism is a difference not a defect. If you or a family member have autism, Abby wants you to know that the challenges can be overcome, and there are blessings in autism. You or your loved one are not sick or broken. Together we will teach the world this new language.