Sometimes, I might act like I know the ins and outs of all things autism. Sometimes I might seem like I am completely lost. This is the nature of raising a child with special needs. It is like a cocktail of fear, anger, confusion, strength and love. Somedays, some ingredients are stronger than others. I write this blog while I balance precariously on that line between total insecurity and steady confidence. I might appear to have a handle on which therapies are legitimate and which are not; which are progressive and worthy of our children and which are archaic and harmful I might even seem like I have it handled pretty well. You might think I know what I want. This is not the case. I have written before about feeling like a fraud. We make choices and decision using the best information we have at the time. I am quick to make choices about treatment but that doesn't mean I don't experience anxiety about my choices. We have agonized over the choices or lack thereof. I have stayed up nights and played out different scenarios in my head. I dread the thought of regretting one of these big decisions. However, these decisions still must be made. We cannot go back and forth on what might be best for Kate because the clock is ticking. So, we make our choices and we hope they are the right ones. Don't all parents feel this way to some extent?
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.
Grace and Kate's mom. (Shanell)