Thursday, September 22, 2011

Points In Time

Where I am right now seemed like a distant, far off thing when my OB took me off work after Christmas. Not quite as far as Alpha Centauri, but not right across the street either. It was like looking at a remote building through the mist; it would shiver and waver and then parts of it would disappear as I squinted and tried to get my bearings.  I knew this point in time it was getting closer, how could I not? But, like anything in the fog, distance is a bit hard to judge. Now I find my arse on the pavement and my nose bloody as I seemed to have been off by a couple hundred miles and ran right into the damn thing.

But, here we all are. I return to work tomorrow. It's no secret that I am ambivalent about the whole thing.  It will be good for me to get out of the house, to have more structure other than 'who pooped when' and who's going to school and who needs socks. Instead, I will be concerned with 'who pooped when', who's going home and who needs meds. It will also mean not being with my babies for almost a week at a time. That is going to hurt. A lot.

This week has not been all doom and gloom however. This week has been about new foods and colours and textures. It's been about new groups and it has been about learning, sharing and clarification of purpose.

Since our last update, the babies have been introduced to bananas, sweet potatoes and peas. I think the jury is still out on the peas, but everything else seems to be an acceptable food source for both of them. In group yesterday (I'll get to more of that later), we had an OT visit to give us feeding tips. One of them was to offer the spoon sideways, not head on, as it forces the tongue back and keeps it from thrusting out (which DS kids tend to have an issue with). Wyatt is pretty good with his tongue and mouth development in general; although he does have a high palate (everyone in my family seems to), he keeps his fingers or thumb in there most of the time which has helped his tongue muscles develop and further his sensory awareness along. I'm just smacking myself as I knew that bit about the spoon... Or at least I did with the first kid:
Ah!  (Gimme!)
This is Quinn... and photographic proof that I knew what I was doing at one time.  My nails were better too...
The sideways technique works much better with Wyatt.  I had been stroking Wyatt's cheeks and lips in an effort (in my mind) to encourage the sensation in those areas which would help (once again, in my mind) with speech and eating.  I was a bit encouraged then when the OT demonstrated how stroking both sides of the face from the top of the jaw to the mouth and then under the nose to the mouth can stimulate awareness of the face and help activate the muscles. She also showed us how stroking the palate (the roof of the mouth) and the gums with a finger can do the same on the inside of the mouth, not to mention teach the tongue to move out of the way.  Many people have an idea of a "typical" DS kid with slouched shoulders and a protruding tongue;  this is due to the hypotonia or low muscle tone.  Try this yourself:  relax your shoulders, your spine, your torso.  Now relax all the muscles in your face.  Now your tongue.  Look in the mirror. Do you see it?

Sean went alone last week, but I was able to attend the group this week for new DS parents put on by ICDSP.  Other than another little girl who was born the same day as the twins, the other babies are only a few months old.  Just by looking around the room I recognized who was at what stage with their babies.  There was still a bit of fear in a few eyes... which makes this site and others like it that much more important.  In fact, I left the URL with the co-ordinator to check out and give to new parents if they wished (so, if you are joining us from there, hi!).  It may be a bit presumptuous, but I wish I had found several of the resources that I have on here much earlier. 

Each week they focus on a new topic.  As I mentioned earlier, today the group was visited by an OT who talked about eating, postioning, etc. There will be other important topics as well, including Will and Estate Planning,  Most of the positioning skills we covered today I already knew from my own research, although it was very validating to see them in action.  In fact, the OT remarked that she was happy to see how we repostion Wyatt frequently and allow him to use all his muscles.  I also brought up my Mother Goose experience as there are plenty of songs, rhymes and stories that you can use to interact with your little one and make it fun, not physio.

I had 'one of those moments' while I was there.  One of those "Aha!" moments, or a moment when you nod and say "yes, this is exactly right" or "this is exactly why I do what I do".  One of the services offered by ICDSP is a lending library of resources.  During the group, many of the DS books were laid out for us to check out if we wish.  Sean and I were the only ones that ventured over to take a look (perhaps we were the only ones ready... that is probably closest to the truth).  Sean picked up one book in particular called "Count Us In:  Growing Up with Down Syndrome" by Jason Kingsley and Mitchell Levitz, two men with Down Syndrome.  What Sean pointed out to me was an excerpt on page three of the introduction, written by Jason's mother Emily.  I've included it here, as Emily's words are much more powerful than mine:
Jason was born on June 27, 1974, and was diagnosed as having Down Syndrome when he was only a few hours old.  Like many other parents, my husband, Charles, and I were told by the doctor, "Your child will be mentally retarded.  He'll never sit or stand, walk or talk.  He'll never read or write or have a single meaningful thought or idea. The common practice for these children is to place them in an institution immediately."  The doctor went so far as to say, "Go home and tell your friends and family that he died in childbirth.".  

Other professionals were consulted reinforced this philosophy.  One psychologist suggested that raising a child like this would put extreme pressure and strain on our marriage and that the constant disappointment over the years would surely destroy our family.

This is in 1974, three years after I was born.   Yes, a whole generation has passed (and then some) between then and now, but ultimately this is not that long ago.  The above practice extended well into the 1980's.  I looked at the men on the cover of the book and thought about them and all the positive stories that I post every day on Down Wit Dat's Facebook Page.  Every one of those adults with Down Syndrome grew up in this environment.  As I've mentioned earlier, this is also the time when I grew up, where "retard" or "retarded" was common parlance.  Quite a few people have asked why I am doing this, why would I bother wasting my time. I've heard everything from "no one cares" to "is this still an issue?" to... well worse, ranging from apathy to ridicule to hatred.  To me the above quote crystalized the "why" for me.  Yes, we have come very far in the last 30 odd years, but we still have a long way to go.  One generation ago, the doctor might have said that to me. In this generation and the one before, I still encounter people that believe the above practice is still standard operating procedure (or that it "should be"). One generation from now, I want my grandchildren to look at their Uncle Wyatt with nothing more other than the love and respect that he deserves.  I want that time to fade into obscurity and looked upon with the same eye that we use look upon the darker areas of our barbaric history.  I want that time to be unfathomable.

Right now, Wyatt is still a little baby, although a little bigger and a little further along in his development.   I had hoped that both he and his sister would be a little more advanced by the time I returned to work, but it was not meant to be.  Instead, I will lug my trusty Medela to work and leave them in their father's capable hands.  For now, today, I will be spending my time with my kids.  We will do fun things and explore together in this last day that we have left together of 'our time'.  They'll eat/wear their mushed up peas and we will have a day filled with laughter.  I used to look at change and focus on the negative aspects, especially the "endings".  I'll say one thing for Wyatt, one of the things that he has taught me to appreciate are the beginnings.  Today is not an ending as much as tomorrow is the beginning. Tomorrow is the beginning of our next adventure.
Laughing
Wyatt laughing at Mommy's antics
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