In 1996 when my son received his autism diagnosis the information superhighway was not as it is today. My only recourse in learning about autism was the local library. I would search for the information and only find information dating in the 1980’s. I would scoop up everything I could find.
Unfortunately, much of this information was inaccurate and outdated. It depicted the worse case scenarios such as severe mental retardation, never being able to live alone, ect…. A parents worse nightmare. When in fact this is not always the case. The outcome for a child on the spectrum is directly related to several factors. The first factor is an accurate diagnosis, and a treatment plan. My son Caleb’s treatment was outlined specifically by his developmental pediatrician who diagnosed him. The second factor is appropriate class placement. As a new parent dealing with special education I had no idea what an appropriate placement was. I was LOST. But I learned.
After the initial shock wore off about his diagnosis we applied for Social Security for my son. I could not work due to the demands of raising a child on the spectrum. Once we were approved, I approached the school about what the best thing I could get for my son to help him. Ipads did not exist then. The school suggested us buying a computer. So we did. Caleb was four and we purchased digital books on CD and he would sit and watch the computer read the book to him. The CD would light up the words as the voice read the book to him. He loved it. I truly believe that is how my son learned to read. He could read long before he could speak.
When the day was done, and Caleb was in bed. I would use the computer to “surf”. One day I was scrolling chat rooms on AOL and ran across a chat room for autism. I entered the room and my life was never the same. Inside this chat room parents of children on the spectrum shared issues they were experiencing. Other parents would chime in and discuss what worked for them to help with that particular issue. This was a godsend to me. I had someone to talk to that was also dealing with autism. Over the course of 17 years of raising a child on the spectrum, this same group of people are still in my life as a means of support.
One of the people in the room was not a parent but an adult who was affected by autism. His name is Stephen Shore. He was so supportive to me from day one. Over the course of 17 years, Stephen has always been a source of information and advice in helping with various issues from classroom placement and services to independent living. Stephen Shore is now a professor at Aldelphi University and author. He wrote his most recent book “Autism for Dummies” which is a perfect reference for those with a new diagnosis and do not know where to begin. Stephen is also an World Renowned Autism Expert doing conferences all over the world on various subjects relating to autism. I am blessed to be able to call him my friend.
It is common for autism parents to retreat into a world of their own similar to their child with autism. It is not healthy. It is critical for the well being of the parent to socialize and interact with those that are also struggling with the same issues. Autism is a big part of your life now. Find other parents dealing with it too. You will be shocked at how it helps!
Now that the information superhighway is very effective there are numerous avenues one can take to interact with parents who are also raising a child on the spectrum. My favorite site is MyAutismTeam. It is parents sharing on a web site about how their day was, and what issues they are dealing with on that day and even how they are dealing with life at that moment. It is a fantastic opportunity for a parent feeling shut in and alone to interact. I also attend a support group designed for parents with adult children with autism.
Do not be ashamed or fail to disclose your child’s autism. It needs to be said (even though its difficult to say). I am part of a large church that serves over 450 children. Some of those children are on the spectrum, yet the parents do not disclose their childs autism. Anyone who comes in contact with your child needs to be informed! Especially the pastor of your church.
Autism is not something to be ashamed of. Do not feel like you are burdening other people by sharing information with them. Sometimes the Lord places us in situations where we need others to help carry our burden from time to time. With the autism rates rising the way they are, there are more children out there than you are aware of. Parents should not feel isolated and alone.
Speak out, and reach out. It is healthy for the mind and spirit. You will be shocked at what it does for the soul when you get to the point where you are helping carry the burden for someone else. It is a true blessing!!!