It’s Not One Size Fits All

There are many different therapies and schools out there for children with developmental delays. There is Occupational Therapy, Pysical Therapy, Speech, Music Therapy, Vision Therapy, Brain Balance, Yoga, Cranial Sacral, Psychiatry, Drug Therapy, Equine Therapy and this is not even the full list! So which one do you choose?

In going through this process with Matthew, I learned that not all things work for all kids. Some of the decisions were easy. Matthew ate few things when he was a toddler and the few things that he did eat, needed to be given to him in just the right way. He reminded me of Baby Bear from the story of the Three Bears - Not too hot or too cold but just right, not too soft or too hard but just right. If it wasn’t just right, he wouldn’t eat it. I remember people telling me that if got hungry enough, he would eventually eat whatever I gave him. That was not the case with Matthew. If it wasn’t right, HE WOULD NOT EAT. The answer to what do I do was pretty straight forward. To help with eating, go to a feeding therapist.

Matthew also had tremors, really poor coordination and had many different sensory processing difficulties (noises bothered him, textures, smells, temperature and on and on). For this, our neurologist suggested Occupational Therapy. Because of his toe walking and poor muscle tone, it was Physical Therapy and speech soon followed because his language was delayed.

Once Matthew was in the world of therapy, I found out how much there is to learn. There were so many things that I had never heard of. I remember the first time that I heard the term hyperbaric oxygen therapy (HBOT) and cranial sacral massage. I knew that I needed to learn more! I read everything that I could get my hands on about what I could do to help Matthew. I was lucky enough to see Temple Grandin speak on a couple of occasions. I was willing to listen to everyone who had knowledge on Autism, Sensory Processing Disfunction, behavior, Epilepsy and anything else that might lead to help for Matthew. Then, as time went on, there was less time to read and research. So much energy went into just getting through the day. At that point, I did my research by talking with parents, therapists and doctors that I saw throughout the day.

I was willing to try everything! If it couldn’t hurt Matthew, maybe it would help him. The problem is, there is only so much time in a day and we only had so much money to spend. So the narrowing down process began. Not everything that I tried, worked for Matthew. Some things did and some didn’t. Weighted blankets worked well for him. He LOVED them. We have weighted blankets in our house from 5 lbs. to 25 lbs. and he loved them all. Music Therapy also worked for him (Miss Stacey was fabulous). Massage helped, which was a suggestion from Miss Jenn and Miss Ali, Matthew’s PT and OT (also, both fabulous).

We tried doing therapies at home. Not a good plan for Matthew. For some kids it is better to work in a comfortable, familiar environment. For Matthew home was where he was able to chill out. The clinic and school was where he worked and this line was not to be crossed. Somethings worked sometimes or for a while and then stopped working. It was a constant re-evaluation and constant communication with his team. It is so important to have everyone working together and on the same page!

We were very fortunate to have a neurologist who knew her stuff and truly wanted to help Matthew. If she didn’t have an answer, she would send us to someone that she thought would. She was skilled and was also willing to listen to me. Most importantly, we trusted her. When she retired, we lost a very important member of our team. I will say over and over how fortunate we were going through this with Matthew. We had a remarkable team who worked together with the common goal of helping Matthew.

It is ok to try something and have it not be the right fit. It is ok to ask questions. It is ok to ask for help. No one has all of the answers. No one has a plan, that if you follow it, will work for every child with Autism or developmental delays. We need to share our information and experiences. and to work together as a team. As a parent, it is not always an easy to realize that you don’t have all of the answers but it is when that realization happens and you ask for help, that you become a superhero!