As I've noted before, I am only 2 years into this journey which will last for the rest of mine, Alex's, and our family's lives. Each stage will be different in dealing with his autism; there will be good days and difficult ones, good spells and bad; good weeks, months, and years, and also tough ones. This isn't true only for raising a child with different needs. Every family will have ups and downs and things will change as children grow older. Transitions inevitably happen - babies turn into children, then adolescents, teenagers, and adults. From what I understand, it happens faster than you can possibly imagine. Although I recognize that the potential is there for any family to experience trouble during the teenage years of their children's lives, I am dreading this future inevitability. I don't have any idea where Alex will be falling on the "Spectrum" at that point - will he be able to communicate with his peers effectively at all? Will he fit in? Will he even be aware of it if he doesn't fit in? Will he have friends? Will he be in our public school system or will we have to place him in a school for children with autism? Will he be able to function in the high school setting at all without extra support? I've heard that the teenage years can be some of the most difficult years for kids with autism because the changes in their minds and bodies can just throw them for a loop even more than their typically developing peers.
When we first discovered that Alex had autism, I felt completely isolated. There were a few months there that I would describe as the most difficult of my life. My husband and I went through the grieving and resolving process together, but separately too. Neither of us was close enough to someone in the same boat to really feel like we had someone to talk to. I talked to professionals who knew a lot about autism, but none of them had gone through or were going through the process of raising their own beloved child with this pervasive, inexplicable problem. Those were some very, very difficult months.
When Alex turned 3 and started preschool, I finally began to meet and talk to some other parents who spoke my new but suddenly native language. I can't describe the difference in the way I feel today versus 2 years ago and I attribute that to the network of friends I've made beginning with Alex's classmates' parents. This is absolutely why there is such a thing as a "support group." There is something about knowing that I'm not the only person in the world who has these feelings of sadness and guilt, exhaustion, and also celebration in small - tiny - victories because my heart still skips a beat every time Alex makes eye contact with me and calls me "Mommy." I dare say that a lot of parents have the liberty of taking those things for granted by the time their children are 4 years old. I love being able to share little things like that with other parents and have them get excited with me. They truly understand why I am excited when Alex does a little thing like actually sit down and take his shoes off - by himself - when directed. I mean, he really does that now! Almost every time! He is still a defiant 4-year-old sometimes, and you know what? I LOVE that! Bring it on!
One of the most important aspects of networking is sharing resources. It's totally overwhelming to navigate all of the resources available to you and your child on the spectrum. It's wonderful to be able to share information about doctors, therapy centers, schools, and the endless range of services out there. Just like with a plumber, roofer, or restaurant, it makes a big difference when your friend tells you how good or bad a service is.
Networking has been pivotal in my own mental well-being as well as in my pursuit of services and therapies for Alex. I know that it will continue to be as we navigate transitions and find ourselves deep into Alex's teenage years and beyond. To know that I will have friends who understand my feelings, can exchange advice with me, and who will be able to dive in alongside me is a great comfort.
