Lesson #4: Getting Support From Other Parents is Crucial to Survival  (Ann)

One of the first things I did after finding out my child had autism seventeen years ago was to start attending a Moms’ Support Group. It felt so good to hear others tell their stories and experiences and I was amazed at how similar they were to my own. For the first time I felt that I didn't have to do this alone. It was a relief to be able to name my fears, to share them with people who really understood. I met a couple of Moms with kids older than my son and it gave me hope to hear their successes and to know that if they have survived this, I can too. The group of Moms that were attending these support meetings developed a very close relationship and we frequently did things together socially. We represented kids all over the spectrum of autism but yet we felt an incredible bond. We counted on each other for the support and information we needed.

Today, when families find out they have a child with autism, their situations are often quite different from when my child was diagnosed. With the Internet, parents have a world of information at their fingertips. Because of this they may not reach out to other parents in their community for advice or to share information about resources. The information on the Internet can include so many kinds of therapies, and ‘cures’, that it can be very overwhelming for families to know what would be best for their child. Parents can find themselves questioning their choices and whether or not they are doing enough for their children. Families end up frequently doing so many therapies that they have little time for anything else, including time for meetings with other parents.

I feel it is important that families not separate themselves into support groups based on functioning level. ALL parents of children with an autism spectrum diagnosis, no matter where they lie on that spectrum, can and should be able to support each other by listening and understanding and by sharing experiences. I know that there are differences between our children, differences between how independent they can be, differences in their school needs, differences in the goals we set for them. But I also know that when I am with a group of parents of different kinds of kids with autism, I can laugh with them at the funny things our kids do sometimes, I can cry with them when they share a really tough situation or experience. I don’t have to have had that experience myself to feel their pain but I can learn from their experience. Some of the best advice on advocating I have received over the years was from parents of kids more challenged than my son, parents who have had to advocate for so much for their children. We need to be strong as a group and not divide among ourselves. All of us have to be advocates for our children the rest of our lives and we will be more successful in fighting for what our kids need if we work together.

Through support from other parents we can survive the difficult years of raising our kids. However, when you feel like you may have finally learned how to work with the system pretty well, having spent 12 or more years dealing with IEPs and placement meetings, parents suddenly have to learn how to do it all over again with a totally different system…actually several systems that make up the world of an adult with a disability. I find myself again overwhelmed, similar to when Eric was first diagnosed. I'm learning all over again, this time about life after public school, about Social Security, about continuing education, about vocational and residential supports. I am also discovering that in the world of adult services it frequently doesn't matter what the “functioning level” of the person with autism is because services are limited for all of us.