Tuesday, April 22, 2014


In my typical loudmouth/external processing fashion, I've been talking a lot about the new information we got last week (the way spectrum stuff is impacting eating and the ABA assessment results) .

I've noticed that almost universally, people (close people and acquaintances)  are struggling with this new information in a way I have not seen thus far in our journey. There seem to be a lot of feelings, in particular, about the developmental ages assigned to Simon in the ABA assessment.

It's fascinating and maddening.

When I explain that, for example,  his receptive language was scored at a 1 year 1 month old level and interpersonal relationship skills at a 1 year 8 month old level, the responses have usually been:

"Do you really agree with the results?"
"He doesn't seem that off."
"That sounds like a very rough assessment."
"I wonder how typical kids would score on that"
"I always ignore reports like that. They're just labels and don't mean anything"

It's hard to get responses like this for two reasons. 

1) This report was super helpful for me b/c it quantified and made more real our lived experience. The numbers were shocking on some level but also explain to people who don't live in our house what exactly we're grappling with every day. It really does feel like we're living with a toddler trapped in a 6 year old body a lot of the time.  Now I know we're not crazy.  And, other people aren't crazy for having a hard time swallowing this information.

As the psychologist at the feeding therapy program explained, it's hard to really understand his delays/potholes sometimes b/c his skill levels are scattered all over the place. In some ways he's at or above what you'd expect for his age. Casual observers, or even Laura and I sometimes forget or don't realize that there are real gaps in his abilities and the "failures" or pushback are not a function of him just trying to be a pain in the ass. Having a realistic picture about where his abilities are right now is actually helpful for me - it means I need to adjust my expectations such that I don't get as frustrated or angry about him "not getting" something he seems like he should. We just really, really need the tools to help with the work-arounds- to build the bridges from point A to point B that he can't do on his own right now. The labels and numbers don't change who he is but they change how I understand how he is interfacing with the world right now.
2) I'm forever grateful for "superheros" like Temple Grandin and para-athletes and other folks with disabilities who do amazing things, but I'm starting to feel the pressure as a parent of a kid with special needs to hold that out as my goal for him.  To reject labels and dream big and not let anything hold us back from him "reaching his full potential", whatever the hell that is for a 6-year old. 

This is not good for  recovering type-A personalities like me.  Type A's are status-conscious, hyperactive, hate ambivalence and are driven to take on more than they can handle.  I have spent the last 10 years, and particularly the last 6, trying to un-learn this pattern.  The unspoken suggestion I keep hearing is that I should push past everyone and everything "in our way" to get him to some pedestal, to some finish line, to some fantasy end point that "defies labels and expectations".  Maybe it's just my Type-A filter that's reading the responses that way, but it's what is coming through. It's making me a little mental.
The Serenity Prayer is what got me through my 20's.  It goes a little something like this: 

God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And wisdom to know the difference.

I've always had the courage to try to change things.  Action has never been my issue.  I'm the biggest do-er you're likely to meet.  It's great and useful and very rewarded in our society,  but it has it's limits.  Especially when you bump up against something you cannot change.  Like, oh, I don't know...your kid having Cardiomyopathy or his brain being wired differently than typical brains or any other number of life-altering, mind-numbingly hard things.  

I'm getting much better at finding the wisdom to know the difference between the things I can and cannot change but the biggest challenge in my adult life has been to make peace with the things I cannot change.  

Ironically, getting a report that says, "oh your kid is acting/thinking/speaking 5 years younger than your brain thinks he should" is helping me make peace with what we're in right now.  We've been busting our asses for the last nine months to make a square peg fit into a round hole because we didn't have an accurate picture of where Simon REALLY is. It's no one's fault. The way his skills are scattered,  it makes the average human think that if they just tried a little harder, if he just paid closer attention, if we just found the right incentive, he could do all the things we and the world are asking him to do. 

Something about the report and the conversation with the psychologist at the feeding therapy clinic made it possible for me to just stop fighting so hard right now and...wait. He can't get directly from point A to point B right now and we don't have the skills to teach him how to walk around the side yet. Denying what the report said or quibbling about a year here or a year there doesn't change the fundamental fact that there are BIG potholes.  He can learn to get around them, but we're not there yet.  We're here.
My goal is to stop pushing so hard.  It's to just sit and be still and enjoy the little snippets of sweetness that are there to be found between the hourly tantrums until help gets here. It's to sit with the sadness and frustration and despair and hope because they're here. 

This shit is hard, y'all.  It's hard for us and I know it's hard for the people who love us.  Thank you for all the ways you support, love, think about, pray for and help us.  I appreciate all of it, even when it's not exactly right.  :-)


Nate's Mom @ Nate is Great said...

You can spend a lot of energy swimming upstream -- so much energy that you don't have what you need to enjoy everything around out. Glad to hear you're floating for a bit. :) We started Nate's blog to stop the questions from friends and family -- because there are no answers. Because we needed every ounce of energy to get Nate the services and care he needs. Because they need to see how much of a journey this is and find ways to help you rather than asking you to help them understand. I know you've got this, mamas. Love this internet thing. Makes us practically neighbors from across the country. xxoo

Becca said...

I don't have a special needs child, but I very much share your feelings about the superstar parent/child pressure. When that article about the autistic son and Disney came out in the NY Times magazine several weeks ago, I was impressed and inspired, but also concerned by the message (mostly subliminal, but also explicit) that if parents just found what made their children tick, their children would make remarkable progress. But what if they don't? I thought. Doesn't this become one more pressure point of potential failure? Anyway, glad that you have found a place of comfort, and wishing you all the best.

Jeri said...

I think the thing that makes situations like this one difficult is the expectations that we have even before they're born, and having to reconcile those ideas with what is real.
It happens all the time with every kid; we're always readjusting our expectations, but with some kids it's more dramatic.
It's traumatic to think, "This is what is." Only to find out you have to start again with your assumptions.
To go from, "My daughter is about to graduate with honors and scholarships, go to college, have a career, get married, give me grandbabies to love on..." to "Will she live through the week?" and "Will her life be ANYTHING like I thought it would be, now?"

Or, "All the ultrasounds were normal, and now we have THIS?"

You've just gone through a massive paradigm change. It helps, like you said, to know the new rules for the game you're playing, but it's also got to be really really hard to wrap your brain around the new reality. It's almost like you have to grieve and mourn the loss of what you thought things would be.
It's also hard to for me to separate myself from the feeling that there is such a thing as a perfect parent, or that if I just did X then Y could happen.

When I gave myself permission to be who I am, and released myself from all the anxiety of trying to fix everything, I was able to better let my children be who they are, and to help them to see that they are OK.

Thanks for being brave enough to share this journey.