"Mom, what if you stood on the corner and sold wine. What if you sold wine to people we didn't even know!"
Oh Elias, you often leave me speechless.
During an event last night, I ran into folks I hadn't seen for years. Each one asked, "How is Elias doing?"
Um...
Depending on our familiarity, I answered this question in a variety of ways.
"He's doing good. Can you believe he's about to finish third grade?"
"He still has his challenges but he has a lot of strengths too."
"Driving me crazy. You know I thought all his physical challenges were hard, but his behavior issues are the most exhausting of all."
The truth is, I'm just so damn tired. Tired of feeling stressed most of the time. I read somewhere that mothers of children with autism have stress levels similar to combat veterans; and that we work, on average, an extra two hours a day compared to other moms at this unpaid job of parenthood.
I believe it.
And autism is just one of Elias's multiple disabilities. Legally blind, with cerebral palsy, the boy is a poster child for stressed-out parents. At least I'm not standing on the corner asking people to give me money for wine.
Not yet.
When a child with special needs enters the family, eight out of ten marriages end in divorce. Eight out of ten. Shit, those are bad odds.
I will always be grateful to Laura, the night nurse at Providence who sat Nick and I down that first week in the NICU, when Elias's weight dropped to one pound six ounces and we didnt know if he would survive, and said: "Marriages end here. You need to talk to each other, and listen. You need to take care of each other in order to take care of your son."
Nick and I followed her advise and instead of shrivelling amidst the trauma of a baby born-too-soon our marriage grew roots, anchoring us to the earth, as the tendrils reached into the depths of our hearts and beyond.
Nine years later, we stand together, stronger still.
And I swear, I would be out on that corner if it weren't for Nick.
I don't often write about him or our relationship because, honestly, loving him is the easiest part of my day. And I tend to write more about the challenges, as well as those moments of clarity that only arise after clawing through the muck, the beauty we notice when, bloodied and weary, we finally stop doing (or swearing or whining or sobbing) to look.
With Nick, its more like air or the ground beneath my feet. Steady, constant, like a heart beat.
Easy, in the most intricate way possible.
Honestly that part always gleams through without you specifying it much - which is sort of exactly your point :).
Too funny about Elias and the wine!
Posted by: Sara | 05/16/2013 at 02:03 AM
So glad you and Nick have each other!!! The right partner is key to surviving everything life throws at you. Wish you had more time just the two if you but that is hard to come by. Glad you can maintain the connection when things get crazy.
Posted by: Kate | 05/16/2013 at 05:47 AM
I keep reading though I have not been commenting often anymore - my life is full of different challenges, with a mostly non-verbal 9 yo with autism. I am curious though about the 8 out of 10 marriages - do you happen to have a source? I've heard similar but never been able to track it down. I am not sure some days how we keep going - but we're coming up on 25 years anyway. It definitely takes a lot more work with our precious Robbie, but we're worth it.
Posted by: Tracy | 05/16/2013 at 08:13 AM
Nothing thoughtful to add, just this: If you set up a wine stand on my corner, I will definitely be your best customer! Particularly on Friday afternoons, leaving my public school job to go home to my "second job" of Mommy/housekeeper all weekend!
Posted by: Lisa Y | 05/17/2013 at 07:56 AM
Elias seems literal.
Literally literal ...
You say - "It hurts"
He responds "No it doesn't"
He is right - It ...
I-T ... doesn't hurt.
Christy is right
It - the pain,
something different than Elias' "It" - hurts
Elias is stating a fact ...
Christy is stating a fact
Both are stating facts .. hence an argument happens …
Elias is not arguing to argue.
He is defending his "It"
Pronouns suck. Exactly what is his "It" ???
Alas ... I am curious what happens without pronoun use …
and what he defines as "It"
Why does Elias hit Olive with his cane?
To get a response.
He wants her to respond.
Ask: Elias, what is your, Elias’ purpose of:
Raising cane =
Lowering cane=
Swinging cane=
Hit Olive in head with cane =
Does his answer = cause and effect
AND …
Ask:
what happened before you raised your cane
during the cane's movement and
after the cane landed on Olive.
Are his answers different between the two groups … does he become frustrated at one cluster of questions and not the other … His answer might be simple …
And, it might be discerned he hits olive for cause (hit)
and effect (so she will stop doing something, or so you will come back into the room)
Cause and effect. You and I learned cause and effect differently.
He played successfully with Olive in your living room, creating a maze, or fort with pillows ...
The next time couch-cushion-play was attempted, "it" was not duplicated because a piece of paper, or a new variable or variables were introduced
Author Temple Grandin - ... Any variation causes stress ... ANY variation .. including something as simple as one piece of paper ...
Teach Elias as one would teach a service dog how to cross an intersection ...
No, your child is not being equated to a dog …
The lesson, to be learned must be taught
over and over again at different intersections,
because of subtle, multiple variations (variables) ...
different crosswalk paint, different width,
different road surfaces, different widths,
different shadows, different people,
different bugs, different weather … etc ...
Temple Grandin is a literal genius.
Does Elias learn in patterns?
Once information for situation A is stored,
It will not necessarily be applied to situation B
For it to be applied to other, settings and situations, it must be taught ... again and again in situation B, C, D, E ...
Your son's homework assignment ---
How did Elias know the main character ... John told me ...
Literally, Elias knew because John told him.
My brain does not see how he could have answered this question differently.
Elias' brain does not see how he could have answered this question differently. Christy's brain says there are many ways to have answered the question …
As Temple Grandin wrote,
Never use absolute rules ... absolute rules Never work
Never rules cause stress ...
Never means never ... never tell a lie ... he will not lie ...
Normies understand, can see, subtle, implied, inferred "things"
When you told Elias he might be teased for possessing a pink lunch box,
that was perfectly genius, on your part. Seriously.
He does not like to be teased.
NOBODY liked to be teased or disliked.
Alas, you said the pink lunch box would equate to teasing …
alas, he understood
pink = teasing
teasing = bad
pink = bad
So, he knew to pick another color to avoid being teased-because-of-a-pink-lunch-box … He thus avoided one situation …. Teased-because-of-a-pink-lunch-box … that shows he is very smart ... he reversed the logic, and chose something which did not equate to teasing ...
Your son is incredibly SMART ... a blind, premie with CP has learned ... figured out ... learned how to WALK ... amazingly brilliant ...
Posted by: Autistic Autism | 05/17/2013 at 04:53 PM
Autistic Autism, I just finished reading your comment twice and will re-read it to Nick later and again for myself because you are brilliant. Thank you for taking the time to explain your perspective on Elias's worldview. He is literal and I am emotional. I often over-talk in my attempts to have him see my view of the situation. Thank you for reminding me to stick to the concrete with my questions. And for teaching me about pronouns; the editor in me catches them in my writing and will try to replace pronouns with more accurate words for more vivid description, but I use them all the time in my speech and have never thought about Elias's comprehension of these vague little words. I'm awed by your understanding. Thank you!
Posted by: Christy | 05/17/2013 at 06:12 PM
Tracy, I don't have a source but have read and heard that stat. numerous times, yet when I tried to find it I found this interesting article: http://www.kennedykrieger.org/overview/news/80-percent-autism-divorce-rate-debunked-first-its-kind-scientific-study
So maybe the odds aren't so bad:) Though the stress is real.
Lisa, I'm right there with you, drinking a hard cider as I write.
Thank you Sara and Kate and all my readers for your ongoing support. Happy Friday all:)
Posted by: Christy | 05/17/2013 at 06:21 PM
Oh and sorry about the hard-to-read words you have to type in order to comment. (It took me two tries to get the last one.) I've just been bombarded by spam comments lately so need an extra step for a bit.
Posted by: Christy | 05/17/2013 at 06:23 PM
thanks for answering! I do think the stress of raising special needs children is very high, but I do hope the odds are lower for divorce. K and I are both committed to our marriage but I do know that it got a lot harder after Robbie's autism became apparent. We just keep working at it.
Posted by: Tracy | 06/06/2013 at 01:43 PM