Autism-Finding Support For The Family

This blog is the fifth in a series about a Lake Elsinore mom's personal challenges and triumphs  ...

One of the first things I realized, once our family started this Autism journey, was that we were in dire need of information and support. It's strange, how when something like this strikes a family, people seem to fade out of your life. I believe it is the ignorance and fear of what Autism really is.  

Most of our friends didn't know what to say or do, so they just didn't call anymore. Some of them, with children my son's age, felt uncomfortable because their children kept hitting the milestones my son wasn't.

Unfortunately, the same was true of a lot of our family members. The invitations to family gatherings have dwindled over the years. Family members and their children, who could have been such great role models for my son, never came around to get to know him. I knew a large part of it was not understanding how this disorder can affect a whole family and what others in the families can do to help.

I really did try to understand this and eventually accepted it. But I can't say it didn't hurt.

The few family members who did take an interest were so wonderful and supportive. My mom was the biggest supporter, even though she was in her 70s at the time, she was there for her grandson and the rest of us. It really helped us through some very hard times.

On the flipside of this, is what I call our "Autism" family." I joined my first support group at my son's preschool. It was nice to share with others the same things we were going through.

I  had contacted the Autism Society of America shortly after my son started preschool. They gave me a phone number for the president of the closest chapter (Desert Communities Autism Society). When I called, I spoke with a man named Peter. He told me he was a single dad and lived in Big Bear with his son Mike who had Autism. His son was a lot older than mine, so I listened very carefully to what he told me. We ended up talking  for over four hours. That was the most expensive call I've ever made, but well worth it! I learned so much in that one call. I could hear in his voice, how proud he was of his son. I knew he saw in him what I saw in my own son. We had an instant connection and friendship (the first of many that formed our new "Autism family").

The local Autism Society chapter was lacking members in 1989. In order to keep the charter for the chapter, there needed to be at least 10 members. They had the required 10 members (but one was actually a dog named "Candy"). They were in jeopardy of having to disband. It's hard to fathom that they had to "search" for families with an Autistic child back then. All I knew was that I didn't want this group to fold. After all, I was new to all of this and needed support and information. The Autism Society was the ONLY organization addressing Autism at the time.

Today, there are hundreds of different groups. I volunteered to invite some of the parents I had met through my son's preschool support group to a meeting in my home in Lake Elsinore. Peter arrived with the secretary of the chapter, a lady named Leah. She came all the way from Indio, and Peter from Big Bear. I couldn't believe the dedication and compassion these two had for this chapter. I felt terrible that there was a possibility that this would be the last meeting for them. I promised to get involved and try to get more members. That day the membership grew from 10 to 24. Within a year we had almost 100 members! To this day, I don't know how, but I ended up being elected secretary of the chapter at that very first meeting. This was also to be the first of numerous meetings in my home, that continued for the next eight years.

The birth of our "ASA" family and my role as an advocate for those with disabilities had begun. That day was also the beginning of forever friendships that are still going strong 22 years later. I also made a lifelong friend in Leah and several other families. Leah and Peter were my mentors and helped me to be able to help others. Unfortunately, we lost Peter several years ago, but his son Mike is still doing well, living with his sister. I went on to become the president of the chapter, for several terms over the next 15 years or so.

Since the local chapter had  been salvaged, I thought it would be better to rename it the Inland Empire Autism Society. The majority of the members were now coming from this area. We kept the same charter number with the national headquarters, but in 1990  the Inland Empire Autism Society of America started anew. 

It is still going strong today. It just recently was renamed the Autism Society of the Inland Empire and the membership has grown tremendously since that day in 1989. This group is different from all the other support groups out there. We are here strictly to offer support and information. The Autism Society never promotes  or endorses any "one" therapy or treatment. They never make parents feel they "need" to do this thing or that thing to FIX their child. 

We are all a family and we don't care whether our children and adults are HFA (High Functioning Autism), Asperger's Syndrome, LFA (low functioning Autism -- I've never met one!), PDD-NOS, or whatever else they call it these days. We just know we have children/adults with Autism. We embrace and accept all of them for who they are, not what they could have been or could be. I wish more of these groups followed this philosophy. I know my son knows he is accepted, he's not broken and we love him unconditionally. Please feel free to comment or ask me questions, as we continue along this journey together. I'm glad to help. Until next time :)