I think it is important to shed some light on the myths and lies that exist around issues of autism. Especially when the autism population is growing or more people are being diagnosed. (That is a topic to discuss another time.)
The myth is that there are programs for everything and for everyone who has autism. The hard truth is there is not a plethora of resources to tap into! When families are faced with a crisis due to autism there is even less.
Let me explain and give some details.
Two years ago my husband and I looked at each other and asked ourselves, “Are we the first family in the state of Indiana to have a 13-year-old non-verbal autistic child with severe behaviors?” I know we aren’t but it felt this way. And sometimes it still does. We have been denied programs and other avenues of help due to:
his age-too young or too old, his cognitive level, he is non-verbal, he lives at home(before he left our home), he is not a ward of the state, etc.
There will be Tsunami of children and young adults that will need care for their entire life. The State of Indiana needs to do better.
There needs to be:
Day Programs during the summer months (No Public Schools do not provide summer school.)
Inpatient Acute Hospitals
Group homes in counties all over the state for elementary, middle-school, and high-schoolers with developmental needs beyond a family’s ability to handle. Believe it or not there are families with very young children who need this type of program.
I’m not really a fan of the government over seeing this. However, the need is so vast that anything at this point would be helpful. Ideally communities would come together and start something. A few parents have and I don’t really know how they muster the energy. At the end of the day most of us parenting special needs children are purely exhausted from the normal activities of living.
Hopefully, my story will compel you the reader jump into action. It’s not enough for the community to be aware of autism. It is important to be active in the special needs community. I understand the average person is not immersed in the special need culture to know how to help. That’s okay. Ride along with me in this journey of life I will share from my heart and hopefully spur you to help make a difference!
Last week, we went to the ER for the third time in 3 months. They were encouraging our spirits as we were taking care of our little guy-Tristan. They were watching us handle Tristan as he was miserable from medication that was intended to help him. These are some thoughts I had.