The genius of Down syndrome

Thursday, 16 August 2012

Really, truly, what does one say to that?

Dancing On The Box.

Friday, 10 August 2012
Anyone who thinks people with Down syndrome (or other developmental disabilities) are not smart, needs to think again.

Some of the most intelligent and insightful remarks made in this family have been made by the people who have "labels". 

Patrick - my middle child and only boy - has Down syndrome. He has been known to come up with some brilliant things. Things that at first glance may seem wrong but - on closer inspection - border on genius.

I recall a speech language therapy session when Patrick was about 4 years old. We - Patrick, the Speech-Language Therapist Elise and I - were working on the concept of Similarities and Differences. Patrick worked on a worksheet. Down the left hand side of the paper were pictures of objects. Patrick's task was to describe an aspect of those objects. On the right hand side of the paper were pictures of three corresponding objects. Patrick was to pick the one that had a similarity to the object on the left. He was winging his way through it. Clearly, he had the concept down pat.

Until the last grouping. On the left, Patrick easily identified a picture of leaves. Just as easily identified that leaves grow on trees. Off to the right were pictures of an apple, candy and an egg. Elise prompted - "Patrick, which of these also grows on trees?" Patrick pointed.

At the egg. 

Elise quickly covered her dismay with encouragement - "Patrick, use your words to tell us which of these also grows on trees... the APPLE, the candy or the egg?" Supremely confident, Patrick pointed to the egg and announced "the egg!"

I felt my stomach drop. Elise stopped hiding her dismay. She pulled back, made a face and said "Patrick! Eggs don't grow on trees!"

Patrick considered her with a look normally reserved for those we pity. He cupped his baby fat hands and explained - 

"Yes. In the nest." 

My son doesn't just think outside the box...he dances on it.
Saturday, 28 July 2012
Humour. It is how life is lived.
I do know a few humourless people. I don't know how they get through their days.

Our family laughed. We struggled just like other families, but for some reason, we had fun doing it. Or maybe that's just in hindsight. Don't get me wrong, we fought. There's no way you could live 8 (at one point even 10) people in a four bedroom house without fights. There were even knives involved at one point (inside joke - maybe shared in another post). Those, we laugh about now.

My mother struggled with some pretty heavy health issues all during my childhood. (I now call her, among other things, the Incredible Bionic Woman - no original parts left) Maybe I only see her through the rose-coloured glass of daughter-hood, but I don't remember her wallowing in self-pity. When she could crack a joke about it, she did. "I can laugh about it, or I can cry about it. I choose to laugh." Believe me, there is an endless stream of colostomy jokes.

My mother - laughing until she cries 
(yes, she IS wiping her eyes with a sock - What? It was clean)

There were many funny moments during my trip to spend time with my dad while Mom went "home" (to Newfoundland) to pack up the last of her things in the old house. Most of the laughs came from some reference to Dad's fading memory. Even he found giggle-worthy moments, like advising me to pay attention to directions, because "you might want to ask someone at some point, and you don't need to look at me".

But the best one was the morning Mom was due home. Dad was excited and was up and dressed (reference past "dirty clothes" post) before I even got out of bed. I stumbled out to the kitchen and saw him finish washing the last of his breakfast dishes.

"Wow! G'morning Dad...You've got your breakfast gone already?"
"Gone but not forgotten."
"What did you have?"
"I don't know."

I looked at him. He looked at me. We chose to laugh.

I didn't think I'd write a post today

Thursday, 12 July 2012

I didn't think I'd write a post today. It was kind of a "free day" for me. My sister Paula took the day off and planned a trip to Peggy's Cove. Dad would stay with my brother-in-law Larry and nephew Colin.
I wasn't expecting any life-altering or deep thoughts in my tourist--sightseeing day. I was expecting a great, fun day with my sister. I got that.

Before we hit Peggy's Cove, we stopped at the memorial for Swissair 111. I was impressed with the simple shell-shaped granite slabs that marked the lives lost. Beautiful, fitting.
And then the Cove.
Aside from the picture-perfect village and slightly picture-weary lighthouse, there was granite. Astounding waves of granite. Granite that has withstood the ravages of time, glaciers, millions of tourists and the continuous pounding of the Atlantic.
And while at first glance the granite looks solid, on closer inspection, scratches and fissures - faults - can be seen.

I started thinking that all of those fissures started out as small nicks left behind by massive glaciers. Time and other natural stresses made them bigger and bigger to the point where some threaten to break the unbreakable rock in two.
And then, in the midst of the expanse of grey, I caught sight of a small wisp of green. Walked closer and sure enough, three blades of grass were blowing in the wind. There was grass growing on solid rock.
No, there was grass growing in the crack in solid rock.

Pretty much the premise of my little blog. So many things can be seen as cracks, fissures, faults in our lives. The A, B, C, Ds (Alzheimer's, Breast Cancer, Down syndrome) in the title can be seen as threats to the constancy and solidity of my life. But they are also opportunities for growth.
I'm rooting (pun intended) for those three blades of grass.

My father is wearing dirty underwear

Wednesday, 11 July 2012

My father is wearing dirty underwear.
My mother will never know.
Before leaving, she reminded me that I would need to lay out dad's clothes each day. No problem. Find a nice "Evelyn Harnett white" t-shirt. Check. Find a clean, crisply-pressed pair of khaki shorts. Check. Socks. Check. Underwear. Cue the screeching brakes.
I didn't know where his underwear was. I searched everywhere I could think of but didn't find them. So, I grabbed the dirty stuff from the laundry hamper and threw it in the washer. And I put his underwear from yesterday on his bed for him to wear today. He'll have the clean stuff tomorrow.
My mother will never know.

My father went out with messy hair.
My mother will never know.
Dad's hair has always had a life of its own. Growing up, some of my fondest memories are of dad's 70's comb-over waving at me in the breeze. As I waved back, my mother would admonish him to "do something about your hair, Guy." Dad's valiant struggle to tame his hair has been a constant in our family's life.
No struggle today. I was too conscious of parenting my parent. I HAD to tell him to take his pills. HAD to tell him to get dressed (yes, in dirty underwear). HAD to tell him to change in his room and not in the living room. HAD to tell him to put on his seatbelt. HAD to tell him to walk on the sidewalk and not on the road. His hair? Not on my HAD to list. I even waved at it a couple of times.
My mother will never know.

Dad used a garbage can to water the flowers.
My mother will never know.
My father is a do-er. He was never the sitting in a Lazy-boy reading the paper kind of father. Even in retirement, he worked eight to ten hour days. So one of my challenges has been to have a viable answer for each time he asked if there was anything he could do. This afternoon he asked if the plants needed to be watered. Sure! That would burn ten minutes or so. Next thing I know dad is heading into the bathroom. Oh-kay... (going to shave again, perhaps?) Water runs and dad heads out with a bathroom garbage can filled with water. Hunh? Whatchu doin dad? Watering the plants. Oh-kay... at this point, I know my mother would have sent him back and instructed dad on exactly how she wanted the plants watered. But if I've learned anything from parenting six kids, one with Down syndrome, it is that sometimes being operational is not the best choice. Results are what matter. Would it make any difference HOW the water was transported to the plants? I didn't think so. The plants are thriving in damp soil. The garbage can is once again catching waste in the washroom.
My mother will never know.

I think dad's been using my toothbrush.
Maybe I'll tell my mother that one. Just for a laugh.

It was shaping up to be a rough day

Tuesday, 10 July 2012

It was shaping up to be a rough day.
Dad's "go-to" when he is confused or mind-lost is sweeping. He swept three times before breakfast today and twice after.
He shaved before breakfast and again after.
He even went back in to the washroom to shave again. Forgot why he went in. I started feeling a twinge of despair.
I remembered watching a documentary about the power of music to spark memory and ran to get my phone. I had loads of music on there from dad's past. Music was always a connection for us. There was always singing in our home.
Hope. I hung my hat on it.
Found some Otis Redding. Hit play. Hoped.
Dad's eyes stayed blank. No.
Found some Bing Crosby. Hit play. Prayed.
Found some Burton Cummings. Hit play. Appealed to any higher power that might be listening.
Country! Dad loved country. Found some Patsy Cline. Hit play. Beseeched.
Scrolled through my playlist, until I found him - Johnny. The Man in Black.
Mr. Cash was always my daddy's favorite. So much so that with earnings from my first "real" job, I bought dad a black guitar for Christmas. He still plays it.
I don't know if the commandment against having other gods will send me straight to hell, but what I did next borders on praying to Johnny Cash.
The first few bars of Solitary Man played and my dreams of erecting a shrine in all black started to wilt. Nothing. But...
But the song played on to the chorus. "I'll be what I am"... was that a sparkle in his eye?
"A solitary man" oh dear jeezus, his lips moved.
By the time the song was fading to its end, we had sung the chorus twice more and the full last verse. With a few words thrown in here and there.
Let's put Johnny on "shuffle all" shall we?
The next hour was spent blissfully - if occasionally unharmoniously - singing about carpenters and ladies, going to Jackson, time in Folsom Prison, and how it ain't me you're lookin for, babe.
I even played Johnny's cover of Nine Inch Nails' "Hurt" even though it couldn't spark memories. Dad loved it.
And then I took my leap of faith.
One of my favorite songs of all time is "Bridge Over Troubled Water"  - dad used to sing it to me. And later, with me. I always saw it as his promise to me that he would be there for me. No matter what. No matter where I went, who I became, what I did or didn't do. No matter if I went away and forgot about him. He would always be my bridge.
I found Simon and Garfunkel, gulped and hit play. Dad looked at me and smiled. And sang. Every word.
By the end of the song, we were singing together.
But something fundamental had changed. The song was still a promise. But now it was a promise from me to him.
No matter what. No matter where you go, who you become, what you do or don't do. No matter if you go away and forget me. Like a bridge over troubled water, daddy, I will ease your mind.

This is harder than I thought it would be

Monday, 9 July 2012

This is harder than I thought it would be. I am enjoying myself immensely but it is hard to see my dad like this. I am loving spending time in his presence. But I can already see how draining days must be for mom. She is quickly becoming my new hero. She always did have a super-human status in my mind. But that was always about surviving herself and still seeing the funny side. This is about surviving him. And still seeing humour.  Loving him through repetitive questions. Admiring him through the blank looks. And even getting angry with him for not being the one that the narrative of their lives to this point made him out to be. She has every right to expect that. He co-wrote most of the chapters and as far as she knew they were written in ink. He was cast as the hero. The white knight. The good guy. The caregiver. Why couldnt their story end the way I had written it in my head? Why couldn't he ride off into the sunset at the end of his day, a clean, white-stallion-riding happily ever after? Not a denoument that drags on, to the point where your fingers tire of turning page after page after page printed with the same paragraphs.  Instead of our hero turning circles, asking for the twentieth time if I was going to bed now and I love you and is there enough blankets on my bed and did I get something to eat and do you need a blanket and what time are you going to bed and I've checked the windows and locked the door and he's going to bed now good night. I love you.
Even I love you gets irritating after the twentieth time when you are exhausted and trying to go to bed.

I love you too dad. Twenty-one.

Good night. Twenty-two.

I do love you. Good night.