Sunday, October 21, 2012

He Ain't Heavy... (31 for 21, Day 21)

When I was planning out my writing schedule for the 31 for 21, I asked the help of a few friends and family.  I badgered inquired of them what they would like to see, or what they thought would make a good entry.  I got a few really nice suggestions from my group, but there was one that stuck with me.  It was from one of my uniformed friends at work;  she suggested that I write about how Wyatt's Down syndrome is really not that much of a problem and what a wonderful kid he was.

I scratched my head a bit on that one, simply because I thought "don't I do that all the time?"   I think I've mentioned a few times what a little darling he is and how any "extra needs" are peanuts compared to his twin sister who is very much in your face all the time.  I gave it a little more thought and realized what she was getting at:  to show parents that it is not a problem.  Down syndrome is not the end of the world.  It is not a death sentence, literally or figuratively.  I do a little of that here and there too, however it is interspersed amongst stories of hours of therapy, tons of doctors appointments and trying to keep track of everyone.  Those little nuggets are hidden amongst more political posts about the R-word and me expressing my frustration at a world that is anything but understanding or kind.

This deserves it's own post... so here we go.


This is my son Wyatt.  He is a beautiful, empathic, adorable little guy.

He is, as of this writing, 20 months old. Wyatt has an AVSD and Down syndrome.  He takes no medication and is asymptomatic;  he only tires easily.  Sometime in the next year, he will have surgery to fix his heart.  He is expected to make a full recovery.

Comparatively, I knew nothing about DS before he was born.  I knew there were disorders and symptoms and even half that information was wrong.  I read long liturgies of therapies and treatments and learned of expectations and society's overwhelming negative view.  I quickly learned how one term 'mental retardation' was a condemnation to a life of marginalization.  A life of ridicule;  of insignificance.

But what does that even mean?  By definition, it is "a slowing", (which, ironically, is what proponents of the word use as an excuse after dropping the R bomb, but I digress...).  By practice it means completely disregarding another human being as being incapable of anything. 

Wyatt has a developmental delay.  It means that he learns to do things like crawl and walk later than average.  He may talk way later than his average peers, but given the range of non-verbal communication he already has (in terms of body language and two signs) he is very capable of making his wants known and expressing himself.

It's hard being his Mom sometimes.  It is.  What I'm about to say may shock and annoy some of you, but that is the risk we take here.  It is not hard to be his Mom because he has Down syndrome.

It is hard because of everyone else. 

The vast majority of people seem to have heard of Down syndrome.  Many think they know what it entails.  Again, I run the risk of annoying you, but here is the reality: most people really have no idea what it is and furthermore, don't care to know.

Even if you did know someone once who had Down syndrome or you knew a guy who knew a guy who dated a girl whose brother had DS... 

You don't know.

I am frequently asked completely ignorant questions and given pitying looks.   I am told things like "I don't envy you" and "you have your hands full".  I am asked things like "didn't you do the testing?" and "where do you find the time to take care of him?".  I was asked once, point blank, why I didn't abort him. 

I find any sort of description of Wyatt's parenting as "admirable" or "heroic" to be insulting as well.  When you think of it, all parents should be angry at that one.  It's what we are supposed to do, isn't it?

That's where parent advocates like myself come in.  I admit, I am not the world's authority on Down syndrome, far from it.  I do know what the first 20 months look like.  Thanks to friends I have met along the way, I have a good idea what 3 years, 6 years, 25 years looks like.  The more I learn, the more I write and the more I share.  The more I share, the more I educate.  If there is one thing that you walk away from this blog with, it should be this:  Down syndrome isn't anything like you thought at all. 

"All the extra work" I do with my son is a) not work as he is my son and b) no more or no less than I have done with my other kids. I am certainly not spending my life in the car going to therapy sessions and appointments, as many of my friends do, shuttling their typical children all over the countryside to hockey, gymnastics, dance, piano or whatever other activities they are enrolled in.  As a parent, you read to your children, you spend time with them on the floor, you introduce them to new things, you help them learn to speak, to sit, to crawl.  This is what we do with Wyatt;  we just have a few adaptations.  We've had a few pieces of specialty equipment here, but those have gone now.  To help him learn to kneel and pull himself up, we use the same thing his twin sister did:  the edge of the coffee table.  He has the same baby books, he has the same toys as his sister and older brother.  We just casually choose one over the others a few times a day and without him even being aware of it, he practices his skills.

Having children is not for everyone;  having a child with a learning disability isn't either, I will agree.  However, if you find yourself in my shoes, if you know someone who is having or has a child with Down syndrome, I want you to know:  it's not that much of a big deal.   He ain't heavy... he's my son.  He loves and is loved like my other two children, like children anywhere.  The only difference lies in the minds of his detractors, who cannot see past his almond shaped eyes and rounded shoulders.  Thankfully, through the efforts of parent advocates everywhere, those minds are slowly changing.

Wyatt will grow up.  Wyatt is loved unconditionally.  Wyatt has Down syndrome.  He ain't heavy... far from it.
"If I'm laden at all
I'm laden with sadness
That everyone's heart
Isn't filled with the gladness
Of love for one another"
    --The Hollies, "He Ain't Heavy, He's My Brother"

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  1. This is exactly how I feel,awesome post.Thank you

  2. Great post. These are my favourite kind of posts, since they reflect how I feel about my own family, T21 included.

    I do, however, have a bone to pick with you, and the DS Blogosphere in general though. Much as we want to be accepted and respected, and we bang the drum about the normal lives we lead, so much of DS Social Media is devoted to

    1.) Stories about health problems that affect individuals with DS
    2.) Stories about children/individuals with DS who faced abnormal difficulties (e.g. getting on a plane in first class, getting lost in the woods)
    3.) Complaints about how society treats us
    4.) Extra efforts that special needs demands
    5.) Statistics about all of the above.

    I'll start by saying I don't have any easy answers; I certainly would never advocate any kind of (self-)censorship or generally "sweeping under the carpet" of the dark side of DS (hah! the DS of DS). It's just that I wonder what percentage of the 31 for 21 posts going on this month fall into categories I've listed above, and how many are posts like this one. While I'm prepared to point out injustice, fight for the rights of my child, and sometimes simply kvetch, the best way I know how to advocate for my child is for my family to live the life we want to, and say "this is how we roll, DS/T21 included."

    Remember, you catch more flies with honey than vinegar and on the internet, don't feed the trolls.

    1. Having a son with DS (as you well know) is ALL of those things. Yes, we do live normal lives. Health issues are part of a normal existence. No one (despite how many chromosomes they have) is perfectly healthy. I do up entries on health issues now and again as I health teach for a living; there are a lot of parents out there that can't find information that suits their particular learning needs and they appreciate these articles as well (at least, this is what people are telling me... I could be completely delusional on that one... Anyone? :) )

      Like I said in the post, being Wyatt's mom isn't hard because he has DS... yes, we go to doctors appointments and stuff, by man! I have friends with typical children that live in their car and never seem to come up for air. I don't. Being Wyatt's mom is hard as there is a lot of social injustice out there, including things like people with DS being excluded from planes, etc. Being Wyatt's mom is hard because... well, society as a whole just doesn't get how awesome our kids are. I try not to feed the trolls, but at the same time, I refuse to live an insular life and only expose Wy to "his own kind". He already has a typical twin and older brother and is going to be as socialized as you can get.

      I can't answer your last question... all I can say is that I try to balance everything out on my blog. Two days in a row I've posted "We are Team Logan, suck it!" posts. :) There is no "Dark Side" to DS. It just is what it is... the good and the bad. Like all of us too.

    2. ...And bloody hell, you've just given me another idea. I have to stop writing! :)

  3. Never doubt that this site is one of the best sources for info on DS. That's very, very important. I'm just sensitive to getting bummed out when we have a lot of DS stories and media this month, and I need to keep having positivity echoed. At the same time I crave positivity, I'm a glutton for scientific information, so that's always appreciated.

    1. For sure, Axel. I get bummed out too. We are of the same mind on a lot of things, methinks. I much prefer doing the happy/funny posts to be honest. :) That's why I often try and juxtapose; Tomorrow (23/10) is going to be pretty heavy for example. Wednesday is just full of cute.


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