When my son was first diagnosed with an Autism Spectrum Disorder (later Asperger's) in 2000, I was devastated. I remember being in the shower the next day and falling to my knees, sobbing, thinking that this beautiful, smart 3-year-old was never going to love, get married, have a family... What was there for him? A world of never understanding others, of aloneness. I think I might have even journaled reams for several days. Not too long after that, I came to a realization: He was the same kid on September 14th, 2000, as he was on September 13th, 2000. But now we were armed with the name of the road we had to walk. And so began the journey...
The above isn't the point today. Today the point is what developed in one area of my life: friendships. I don't really make friends easily or quickly -- I'm much more of a tortoise -- and my list of friends has always been small. Having moved to a place near none of my friends, having no job anymore, and having no such thing as Facebook, I lost contact with most of my friends. Taking care of a child with an ASD is very time consuming and stress inducing even without caring for his toddler sister. Autism is so very different from most other disabilities. Parenting is so very different. Sleeping is so very different. Meal planning is so very different. Schooling is so very different. Therapies are so very different. It isn't called a pervasive developmental disorder for nothing: There is no part of his life, or ours, left unaffected by his autism.
About a year into the diagnosis, a local parent of another child with an ASD put out an ad to start a support group. This was a pool of people, all mothers, who understood what it meant to be the mother of a child with Autism, the stress, the interrupted sleep, the battles with school, the battles with insurance. Looking at other children the same age and grieving that he'll never be like that. We didn't need to explain why we had to hang up the phone; it was enough to say, "Gotta go -- Bye!" We never said to each other, "Let me have him for two weeks. I'll make him straighten up and fly right." And no one would think to say, "He'll eat it if he's hungry enough."
Behold my new friends! How could anyone else understand what I was going through? What it was like to have a child with Autism. The broken dreams. The grim future. The heartbreak. The fights with school. These people never said to me, "God gives special children to special people." Or, "Was it something you did when you were pregnant?" Or, "I don't know how you do it. I couldn't do it." (FYI: You do it because you have no choice. You can't cure them, and you can't give them back.) When the elementary school principal called me to tell me that my son was running around her office and spitting on her, these people applauded the accomplishment of his spitting right along with me -- if he could now spit -- a heretofore unmastered skill -- he could have toothpaste on his toothbrush! Oh, happy day!
My son is 12 now. He's doing reasonably well. (There's a lot to be said for better living through chemistry.) He's in a program that, though not fully appropriate for him, is the least inappropriate that the school system has available. We still have battles with school and insurance. We still have battles with my son. And I would never wish puberty on anyone. But all in all, today, he's doing reasonably well.
He's doing so well that last year I took on my daughter's Girl Scout troop. I love Girl Scouts. I was never one as a child, but I think it's a phenomenal organization. I also volunteer with AWANA. And you know what? I found that I could find friends among mothers of neurotypical children, too. My world doesn't have to consist of the world of Special Education. While I'll probably always be involved in the ASD Support Group of SoMD, I just don't feel like being an officer of the Citizens' Advisory Committee for Special Education and sitting on the board of the local Learning Disabilities Association and, and, and... I'd like to get on with life.
So why am I talking about this now? Well, it's because of my dear friend who is now a member of the baby-loss group. I look back to that paragraph above, How could anyone else know what I was going through? I know that parents in the baby-loss group will be my friend's new set of friends. Everything that happens will be measured against the life of her son, the life not lived, and that group of people will understand every emotion that grips her, every tear that she sheds, every milestone not met, the heartbreak of every holiday and birthday with an empty place at the table.
I'm not a member of that group, and I can't compare my situation to hers, but I can understand surrounding yourself with the In-Group. I so want to comfort my friend. Will she let me? I'll just make sure that I stick around just in case...