Care and Feeding of the 'Special Needs Parent' (31 for 21, Day 14)

It's only human nature to be weirded out sometimes.  We have a limited capacity for accepting new things it seems;  I see it on the faces of all the new people at work all the time.  I work in mental health, an area where I have seen some things in my day.  Lots of scary things, lots of very sad things.  It doesn't matter who it is either, could be a nurse from another department, could be a visitor, a doctor, it could be a new security guard... they all get that slightly fearful "I don't know what I am looking at or quite what to do right now" look.  Often there is a stunned silence that goes with it.  I watch this and I intervene when and where I can.  In the absence of experience, a little health teaching can go pretty far sometimes.

I ran into a lot of that with Wyatt's diagnosis too.  Down syndrome is not a scary or weird or sad thing as it turns out, but at the time... well, I thought it was.  I had a lack of knowledge, so I began teaching myself and then others about Down syndrome.  In the interim, the health teaching and increased knowledge gave me comfort where I did not have experience.  Now that I have some experience (at least almost 20 months worth) of this 'special needs' Mom gig, I feel much better, but I am continuing to learn.  I still see that look sometimes though, on friends, family, colleagues... strangers in the supermarket.  Sadly, the knowledge deficit that I had is peanuts compared to the rest of the world.  The last generation or so of people with DS have come so far and right now we are on the threshold of something fantastic.  The life expectancy has gone (in my lifetime) from 25 to 60+ and with each new discovery, is climbing higher and higher.  We have not yet completely tapped the cognitive potential of the Down syndrome brain either.  In the next few years we will see some serious advancements.  Sadly, most people will never hear or know about it, or even believe it once it happens.  It's too weird.  The stigma runs too deep.

As a parent of a little boy with Down syndrome (and of twins), I am aware of all these exciting things.  I am also aware of a lot of things that we 'in the community' have to put up with all the time that you may not know exist.  I'm not asking to be treated like a Fabergé egg, don't get me wrong.  However, if I am edgy or tired or tear up easily, there probably is a good reason for it.  I'm not clinically depressed, thanks.  I'm not sorry my son has an extra chromosome either.  I would however, like to point out a few things that you may be unaware of.

The R Word

Please don't ever use it in my presence.  I am speaking of the R word or "retarded".  It is the most offensive thing that you could say, ever.  I would rather you punched me in the face or dump a bucket of raw sewage over my head as both of those are easier to deal with.  That goes for any word with the suffix "-tard" at the end, no matter how 'cute' or edgy it may seem.  I have said, in detail, many times what that word represents.  Others have said similar.  It never seems to be enough.  When you describe your dog using this word as he's tracked in mud or use this word to describe your boss, the cop giving you a ticket... whatever small insignificant annoyance has troubled you... you completely and utterly demean everything that my son does and will ever do.  You demean my family.  You demean me.  It is a name of oppression, it is a word of hate.  Do. Not. Use. It.  Ever.

FYI:  Citing free speech or artistic freedom or some other thing to cover your bad behaviour only makes you look like more of an asshole. 


"I am tired"

Nowadays, it from shift work and two teething toddlers.  However, we 'special needs' parents lose a lot more sleep on average.  Lack of sleep will do a number on a person;  I swear that 80 percent of my patients just need a decent night's sleep.  Being tired not only interferes with mood and brain functioning, but it can also contribute to things like weight gain and lowered immunity.  If I have a nap on my break, don't assume I've been up all night partying.  I've probably been attending to one of my kids or the laundry monster in the basement.  Besides, I can't remember the last time that I was up all night partying.  If I do have a glass of wine, it will occur in the hour between the last kid going to bed and when I fall asleep in the chair/couch/drooling on the laptop.


"I am worried"

I worry about a lot of stuff, even if I don't show it all the time.  I worry about my son's heart and his upcoming surgery.  I worry that my eldest will be bullied as his younger brother has a learning disability.  I worry that I won't live to the point where my kids don't need me any more.  I worry that my daughter is going to end up with some narcissistic antisocial jerk that treats her like crap and she loses her amazon spark.  I worry that the lady behind me in the supermarket who is peering at my twins and wondering why the boy looks a bit different is going to say something stupid and I will get into a fight right there as I am trying to scan my fabric softener.

All parents worry, that is true.  We worry more.


"I don't want to talk about it" and "I want to talk about it"

I blog as a type of therapy, this is not a secret.  Most of the time I "get it all out" in this format, my page or my group.  As a result, I probably won't feel like talking much when you approach me looking for an update.  Honestly, I'm not trying to be difficult when I say "read the blog", it's just that I've said it all already.  I'm a better writer than I am a public speaker so you will probably get the best answers here anyway. 

Some days are different and in the course of a conversation you and I will stumble on some new research or nugget that I have discovered.  Just let me geek out a bit, ok?  I promise I will listen to your tales of knitting or how many squats you did or whatever it is in particular that you are interested in.  Down syndrome is more than just something my son has;  as I continue to learn more about it every day, it's become a hobby for me in a way.


"I want to hear about your kids" and "I don't want to hear about your kids"

I love my nieces and nephews.   I love all the little people that are in my life.  I love sharing in their triumphs and developments.  Please, share them with me, guilt free.  If, at some point, I suddenly excuse myself to use the washroom and come back with red eyes, just let it go ok?  I'm probably having a bad day.

What I won't do is get into a "pissing contest" with other parents, especially those whose kids have special needs.  It is not a contest.  No one wins if they prove they have the sickest kids and the most on their plate.  Stress is subjective, as is anxiety and grief.  I will help, support, validate, care and love you when and where I can.  I will not feed your ego.  With that;


Bullying is everywhere

I don't want to hear about people having to 'just toughen up', ever.  I have 'toughened up' more than most people will ever comprehend (sadly, that is not idle boasting).  Bullying is a real monster and I see it everywhere.  It is in the schoolyard, on the school bus.  It is at my work, in the form of lateral violence between my colleagues and between departments.  It is in every online chat room, in the comments of every page, in every forum and especially on Facebook.  Trolls are everywhere and sadly some people have so little in their lives to fill them up that they get off by being hateful in a semi-anonymous forum.  I am a target as I am "out there" being an advocate for a highly marginalized group of people that get made fun of an awful lot.  I also speak my mind and consistently call people on their bad behaviour; I don't care who they are.

What may be a surprise to some is that bullying exists in the special needs community too.  I've seen fans from one special needs page troll another special needs page for a difference of opinion.  There's a lot of passive-aggressiveness out there in "the community".  It's particularly sad as it diverts energy that could be making things better for everyone.  Things are very compartmentalized in the special needs world, based along diagnostic, political or religious lines.  It's kinda ironic that a bunch of folks that ask for inclusion can't practice it amongst themselves.  All are welcome at my table;  many of my readers don't know anyone with Down syndrome but recognize that the paths that we walk are similar.

Bullying is a trigger for me.  It is never a joke and never tolerated.


Coping is as Coping Does

Coping, like stress, anxiety and grief, is subjective.  What works for me may not work for you, just as what stresses you out might just 'roll off my back' like water off the proverbial duck.  As long as what we are employing as coping mechanisms isn't destructive and does not interfere with the rest of our lives, it's okay.  That may mean building a fort in the closet one afternoon.  It may mean a glass of wine or two (or three).  It may mean extra long runs in the rain.  It may mean recreating the Sistine chapel on your bathroom ceiling, it may mean simply approaching a problem from a different angle.  It may mean all of those things or none of them.  Whatever works, man.

I use an analogy that I share with my patients a lot.  I have, in my mind, a coping "toolbox" that I use to battle stress and anxiety.  It has a variety of specialized tools that I employ at specific times based on my stress levels.  If my stress is low, I may hang out on Facebook or read or blog.  If my stress is higher and I find myself unable to concentrate on those things, maybe I'll walk or pull weeds in the garden or sort out the toys.  I wouldn't use a wrench instead of a pencil, so I don't try to read when I am particularly anxious.  I have different techniques (or "tools") for different situations which allows me to be prepared most of the time.  My tools are as varied as I am and can range from wandering around the yard with a camera to helping out one of my Facebook friends with a problem.  None of it is wasted time.

On a related note, I finally found the answer to "I don't know how you have the time to do it all."  You know all the time you spend at the nail salon, doing your hair, painting your toenails, watching tv, playing sports, visiting friends, going to classes or building things?  Yeah... I don't do any of that.


Parents of 'special needs' children are special in their own right sometimes.  We still have the same hierarchy of needs that everyone else does (thank you Abraham Maslow), but in order to achieve happiness, we have a few more quirks than most.  We are, however, not fragile snowflakes or weird specimens.  We are people whose kids have a few more hurdles than the rest... and they aren't weird either.

I have a little joke that I share with new people in psychiatry, especially the students.  I tell them to "always know what side of the glass you are on".  It's not an 'us vs. them' thing, rather it is a matter of perspective as to who is on the 'inside' and who is on the 'outside'.  Both sides sees the other as bizarre, ill and often, ignorant.  The trick is to create a space where the glass is no longer necessary;  hopefully with a little education and understanding we can all be happy, fulfilled people.

In the meantime, don't get huffy when I am a bit off, or I forget to call or you encounter one of the things I've mentioned here.  On some days it is harder to choke down the extra helpings on my plate.  Instead, pull up a chair.  Offer up an understanding ear, or if you dare, dig in a spoon.  You'd be surprised what flavours will greet your senses.