Wednesday, February 19, 2014

No One Really Knows

The thing about parenting autism, no matter how many specialists, therapists, special schools, and so forth you take your child to, is that we, as parents, just don't know what the end game is in our child's development. We don't, do we?

We, as parents, have dozens, sometimes hundreds, of opinions thrown at us of where our child will be at age 18 or 21, or 25- the magical aging out deadlines in many cases for services.

It's like we're being told that this is the finite point of development.

We don't even know what that means, but we fear the hell out of it. 

Parents are told that their nine year old has the emotional maturity of a four year old and that their fifteen year old is intellectually on the same level as an eighteen month old baby. We're told, at times, that our children will never live independently or get married. That they will never work "normal" jobs. The methods of measuring this criteria aren't exactly well explained, but place a lot of fear and anxiety into us because as soon as we hear this information, we feel as if we must do something other than feel guilt and pain.

However, we just don't know what, exactly we're supposed to do. More therapy? Less therapy? Social skills classes? Another school? Meds?

We just don't know, do we?

I wish that those who dole out this advice would understand we worry about the livelihoods of our children night and day. It's what drives us to fill our brains with information. It's what challenges us to find alternate solutions when we're told there aren't any solutions left. This is what makes us lobby politicians and sue school districts; to push for so much.

If you're an expert telling a parent what to expect down the road, make sure your criteria is correct and on spot, not something you've yanked out of the clouds from your "years of experience." Your years of experience might just be you phoning it in and getting something wrong.

Parents, I think, would commit arson to know where their child will be ten or twenty years from now. It's not that we're being given the answers we don't want, it's that the answers are so abstract and seem so rote, that they sound hollow and untrue.

We see these examples of autism success in society and we don't know whether to be excited by the prospect or jaded. None of those examples are held up to us in meetings or appointments, only doom, deficits, low IQ scores, and then a soft example of how well our child is doing. Kind of like a pat on the head after a kick in the gut.

When our discussions, meetings, and appointments are finished, we pull our chins up, devise new plans... and we still don't know. We try to give everyone a seat at the table, listen to everyone who knows "everything," but no one knows a damned thing.

Especially us and them.

Surely the keepers of the proverbial magic eight balls will at some point clue us parents into how they know our children better than we do?

Some days, I feel like the majority of parents feel like this is our eight ball answer:
Image by: Angry Dog Designs

I just hope that's not how it is. People need to do better.


  1. I don't (always) think that they don't give a damn. I think it's more that they can't see outside of their deeply proscribed boxes so they can't envision OTHER ways to reach the child before them, to get the glimpses and glimmers that parents get and that only other parents understand. But, in the end, it is true... we just don't ever really KNOW. *sigh*

  2. I'm really feeling this heavily today, with a meeting looming tomorrow to discuss my daughters school behavior (again). I find myself running the gambit (again) to figure out the next step and what more we can do...neuropsych, biomed, meds. It just never ends. I continually revisit things that I have decided not to do in the past, just because I really want something to help her. Tonight, I just want to get off the carousel.