I have lucid moments where things seem clear. During these times I know what I want and I want it delivered. These moments are rare. Mostly, the complexities of this diagnosis are overwhelming. The massive amount of information surrounding autism, treatments, attitudes and philosophies is too much to sort and classify. The misinformation alone keeps me up at night. The readers are so full of compliments for me and I love it but I want you to know I don't have this figured out. I flounder around reading like a maniac. I read medical journals and books and blogs. I read peer-reviewed studies and the heartfelt words of mom's and dad's who 'know.' I ask people questions about their experiences. Sometimes after the kids are in bed I set out to read the entire internet. The bottom line is there is so much I don't know. There is so much I still have to figure out. The experts don't 'know' either, you know. They pretend to know. They answer with confidence but they don't really 'know.' There are more contradictions in the literature than there are agreements and this leaves us further confused. Don't even get me started on the divides within the community. They are most the heartbreaking and confusing of all.
I am writing this because I get many emails from mom's and dad's who are afraid. Parent's who ask me questions I have no right to answer. I want to answer. I want to help but I am unqualified to answer. I can tell you my story and my experience but that is all I have for you. My heart aches for these parents who are beginning their journeys. My heart aches for the parents who have been trying to figure this out for years. I feel gutted that I can't take away your worries. There is too much I don't know.
There are a few things I do know, however. These are the things I know for sure:
I know you cry in your car because it is the only time you are alone.
I know you feel guilty for fantasizing about how life might have been different.
I know you worry about neglecting your other children.
I know you cringe when you hear the "r" word.
I know you worry about choosing the wrong therapy/intervention/treatment.
I know you feel guilty because you cannot afford treatment.
I know you feel angry that treatment is not available.
I know you sometimes resent people who don't 'know.'
I know you feel awful when you compare your child(ren) to others or to each other.
I know you have a hard time thinking about the future.
I know you worry all the time.
I know you feel guilty all the time.
I know you are so proud of your child(ren)
I know you celebrate milestones that others could never understand.
I know you know your children are perfect.
I know you adore your child(ren).
I know you would still choose them.
I know they would always choose you.