She shared this with me long before Caleb was formally in the diagnosis process, but well past when his behaviors started falling outside of "normal". When we had "tried everything" and nothing was working. Unfortunately the message I was getting from friends, family, and even strangers was that it was somehow my fault. I wasn't trying hard enough. I wasn't patient enough. Of course, I was already telling myself all of these things so hearing it really didn't help. We even had family members get together and "decide" that Caleb isn't on the spectrum, then felt the need to share that with us.
Then in the last year, two people who have walked this road before changed how alone I felt. One, a friend from long ago, who read one of my blog posts and emailed me to share her son's story. Although I never took her up on it, she welcomed me to call anytime if I had questions or just needed to talk to someone. Such a genuine offer from a busy mom of many! That first encounter of true support gave me courage to keep going even when it seemed all I was getting was no for an answer.
The second person came from a very unexpected source. I don't even know what made me open up to this particular mom during one of our Tae Kwon Do post-testing ladies' night out. I'd blame it on the alcohol, but as I had just found out I was pregnant I was very much sober! She shared some of her son's struggles with ADHD and some of the things they had found helpful. In the time since then, she has never failed to ask me how Caleb is doing or how I am doing. She has shared local resources and has been extremely honest and open with their journey with various psychiatric medications.
Is this to say others have not been supportive? Absolutely not. Others have offered me an ear for my daily frustrations, and still others have provided a sounding board for brainstorming behaviors from their years of experience as moms. These examples from people who have "been there", however, really made a big difference for me.
It is this type of support, from other parents, that is what I think those facing this diagnosis for the first time need most. They need honesty. Transparent discussion of what it is really like, even when it is hard. They need frank, non judgmental, discussion of controversial topics. They also need encouragement. Someone to sincerely say, Call me anytime. I've been there, I will listen. They need someone to listen. They need someone to tell them to keep pushing. Honestly in out case we are really blessed to have a pediatrician that has actually been a driving force for me by referring us to the right places (we've had quite a few insurance issues along the way, particularly with long waiting lists at "preferred" providers), calling us at home when she has another idea, and pushing me never to take no for an answer.
Parents need to know that they are not alone. I am not alone. They are not the first to walk this road and they too shall survive. Even if today I can't see how. It will be hard, but it can be done.
Even if today it seems impossible.