(Click here to read Part I)
Those early years of learning about H.’s disability were the most difficult. The uncertainty of what might be affecting his development lead me to spend many, many, many (many) hours online, getting my PhD at “Google U”, reading post after post of the many blogs and discussion groups of parents of kids with disabilities, and feeling wretched and personally responsible for whatever “it” was
It was eye-opening. There was a whole world out there of atypical kids and their parents, and so many disorders and syndromes that I’d never heard of but that hundreds or thousands of people live with every day. It was heartening to learn that there were many kids out there like H. and many parents like me. Finding that world was a real salve to my feelings of isolation, and I made virtual friendships with many other “autism moms.”
But after awhile my interest in researching, reading, and discussion waned. I grew more protective of my own feelings, and realized that if I read an angry blog post, I would tense up. If I read a ranting post, I’d feel — well, rant-y. Eventually I realized that what I truly needed was to connect with people who were not just “autism parents” but those who also shared my goal of being as positive and even-keeled as possible. Life with kids can be hard; life with kids with disabilities can be even more so; but I didn’t really want to dwell on that fact.
In fact, dwelling on it meant heightening that sense of isolation I was fighting to be rid of, especially regarding “typical” parents and families. I learned that if I was always mentally comparing our lives to theirs (“You think you have it hard? Try toileting-training a non-verbal eight-year old!”), the sense of otherness grew. Each detail of our lives that differed from theirs was another brick in the wall I was building, another chance for me to say, “We have it harder” and “You’ll never understand.” It also gave me a chance to feel sorry myself. That’s something I don’t need.
I still have days when I fall into the us-versus-them rut; it almost always means I’m overtired, worn thin, and need a break. There are a few parents of kids like H. that I’ve met, who have become good friends and who are wonderful sources of strength and understanding. But I also have a lot of friends and family members who have never experienced what we do every day, who may not be able to empathize but who—just by caring about H. and asking about him (not in the hushed tones of shame that I truly despise but in the open, interested way you’d ask about any kid)¨have shown that they are with us on this journey, wherever it takes us. We are never truly alone.