What Down Syndrome and Autism Look like at our House.

Dear Reader,

I know you wonder, but are afraid to ask.  You think it’s impolite to inquire or to show that you don’t have a clue what goes on.  You don’t want to be intrusive.  You google it and you get the standard definitions and prognoses.  But you still don’t know what it’s really like.  You have a friend with a child with one of these diagnoses.  You may know someone who, like me, deals with a child with this dual diagnosis.  Maybe you don’t even know the official diagnosis.  Either way, you’d like to know so that you can either be more supportive or understanding, or so that you are just more aware.  I have friends and acquaintances that ask.  I appreciate their honest questions.  I am never offended by sincere inquiries; I am occasionally ‘put off’ by antiquated assumptions and even un-antiquated ones. 

I love how information is so easily obtainable in today’s world.  It is, however, still difficult to find out the day-to-day reality of such things.  “Does she dress herself?”, “What does she do all day?”, “Does she have friends?”.  All good and honest questions that I never mind answering.  So, to answer a handful of these questions, I’d like to walk you through a typical day with my Mary.


It’s not long after 6am that I reluctantly pull myself out of bed after icing some of the chronically troublesome spots.  I ruptured a disc a few years back trying to help Mary in the shower.  She’s strong and uncooperative at times, hence, the injury.  It flares up from time to time.  I throw on some sweats and go down to Mary’s room to get her going.  I put on my cheerful face and voice and sing a “Good Morning” while opening up her blinds and laying out her clothes.  I remind her to go to the bathroom and she grunts at me.  I then escort her to the bathroom and stand by while verbally encouraging her.  She doesn't’ do her toilet-ing independently.  She refuses, as usual to flush.  But she will put the lid down.  Yay.  I flush for her and then help her wash her hands and face.  Sometimes she fights me and I have to get creative.  Lots of singing and the “cheerful voice”.  When she resists there is often yelling on her part.  It sounds more like a wildcat scream than human yelling and it really ticks me off.  I have to really force myself to stay calm when she fights me.  To save us both, I will usually just walk out of the room for a bit.  Thankfully, this only happens a few days a month.  She returns to her room and dresses herself in the clothes I’ve laid out.  (Clothes have to be laid out “just so”.  If they are not, she will put them on backwards.  She’s even put on 2 pairs of pants before but no shirt!)  I make her bed and head to the kitchen to make her some breakfast.

As Mary has gotten older, she’s begun to be less active and put on weight, so, I try to make meals that are healthy for her.  After a breakfast of an egg and toast, I encourage her to bring me her dirty dishes.  She rarely will do this, but the occasional success keeps me trying.  After this we brush teeth and hair, then get ready for the bus that takes her to program.

Note:  We have only recently had services like a day program available to us.  We waited, on a waiting list, for over 12 years when we lived in Utah.  We had zero assistance, no job training, no day program.  I call those years the “Dark Ages”.  They were rough and always downhill sliding.   

We now have wonderful services for her.  Just the other day one of the aides called me to tell me that Mary was learning to cook!  What??  I was ecstatic.   Now, on Tuesdays, she helps to pick out what she’d like to prepare.  They have picture cards for her to choose her food.  That day she had picked a burrito and strawberries.  Then, she gets to go shopping; all of this is with assistance, of course.  She even gets to hand the cashier the $$!  On Wednesday, she works with the aides to prepare the food.   She’s even used a knife to cut the fruit.  Lastly, she sits down with the others and enjoys her meal.  I was so excited about this that I got misty-eyed.  So, great progress is being made in this new program!

Back to our day.  The bus brings her home around 3:30 pm.  She is usually tired by this point so we get a snack of fruit and chill with one of her favorite movies.  She loves musicals and lately her favorite has been “Newsies”.  She has many favorites actually.  I really believe, and actually have proof, that music is a link from her brain to speech.  When music is on, she will move her lips and often vocalize.  In church the other day, during the singing of a hymn, Mary was moving her lips to the music being played.  It was one of those small things that is pretty dang cool for us.  Familiar movies do the same thing.  One of our breakthrough moments a few years back was when she clearly said, “E.T. phone home”! 

The rest of the day/evening is spent eating dinner or going out, hanging out together, watching another movie, then bedtime.  Sounds pretty normal right?  Yeah, well, it is for us.  What isn’t normal is the way I am so exhausted at the end of a day, just from worrying about her constantly.  If we want to go anywhere, we have to get a sitter or take her with us.  Dates?  They are hard to arrange.  A moment alone?  Gotta wait till after 9pm.  Are there any blocks of time that I don’t think about where she is and what’s she doing?  Just when I sleep.  Sounds like the mom of young children right?  Yep, it’s very similar and I’ve been doing it for 34 years.


So, that’s a day in our life with Mary.  We won’t go into doctor/dentist visits where she has to be sedated to just get her in the office, trips to the store where she has a meltdown because it was too crowded and people brushed against her, or days when she’s sick and can’t tell us what is hurting.  Thankfully those days don’t happen too often. 

We rejoice when she says something, even if it’s, “Go away!”.  We count each smile she gives us as a blessing.  We thrill when she takes our hand and initiates physical contact.   We deeply appreciate it when Mary looks us in the eye, allows us to hug her, says a few words or just giggles.  Each little thing is really a HUGE thing to us.

In closing, I’d like to share one of my favorite things about life with Mary.  Bedtime.  We take her into her room to get her ready.  About this time she starts to giggle.  We lay out her pajamas - correctly.  By the time she begins to dress, she is giggling so hard she can barely see straight.  She will usually start with her “gibberish” talk which includes lots of nonsensical words and even more laughing.  It’s totally hilarious and I love it.  As we kiss her goodnight and turn out the light, the happy sounds continue.  Even as much as an hour later, we often still can hear her giggling or “talking” to herself.  It’s my favorite of favorites!

Some say I need to push her to achieve great things by the worlds standard.  Some say she needs speech training, vocational training, music lessons, and learning to read.  Some say she doesn’t have a full and rewarding life without those things.  Some say she needs to have goals and achievements.  I will challenge that thinking. 

When Mary is happy, there is no greater accomplishment than that.  

And it is enough.

"DO - OVERS"

 IF I COULD DO OVER ALL THOSE YESTERDAYS

I believe that living with regrets is a huge waste of time.  Self-recrimination, the burdening of your soul, bashing yourself over the head;  all a waste of life.  I know.  I’ve spent lots of time doing this very thing.  And what did I get from it?  Many sleepless nights, ulcers, chronic illness, depression, frustration, anger; the list goes on and on.  I even think it’s stunted my emotional growth.  And it has made me avoid human interaction at times.  It’s true.  Sometimes I just don’t like people much.

Yes folks, hanging on to your regrets is a form of emotional self-mutilation.  That’s right, you heard me.  We figuratively “beat ourselves up” over all the things we did wrong, badly, or stupidly.  So, why do we regret things?  Can there be a purpose?  Yes ma’am! (or sir)  IF you can quickly chalk those regrets up to experience and turn it into a lesson learned, then you can let them go and move on.  Kind of like cleaning out the junk drawer or the junk closet at home; you know, the one you always cuss at because it’s so dang disorganized and messy? 
So, here is MY list of “Things I’d ‘Do-Over’ if I Could”.


 
1. I’d slow down just a tad.   As my very good friend, Ferris Bueller once said, “Life moves pretty fast. If you don't stop and look around once in a while, you could miss it.”.  We all know this is true.  Life, for me, seemed to really speed up once I hit adulthood.  There is something about being a kid and enjoying life; they are SO good at it!  But as we take on careers, responsibility, financial upward movement, family life and community involvement, this is the first thing to go - enjoying life.  So, what would I do over?  I’d savor the sound of my children’s voices; I’d play with them more and I’d reach over and take their hand one more time.  I’d ask them to tell me a story or something I didn’t know.  I’d take that road, less traveled, that I passed each day in my hurries.  I’d hike that trail I always wanted to hike, I’d stick my feet in the creek and splash.

I’d try to do the things that catch my fancy.  I’d go see that friend that I’ve been meaning to visit, before they’re gone.  I’d live in the moment more and make a lot less “to-do” lists!




2. I’d worry less.   Seriously, I could teach a 10 week course on “How TO Worry”.  Even as a child I was labeled a “worry-wart” by my mom.  I still do it.  And the only thing I get out of it is stress.  I worry about what might happen if “…”,  I worry about my family members, I worry about finances, I worry about not having enough time to do everything for everyone.
  And where has it gotten me?  Well, in all fairness, a bit of worry can move you to action.  BUT,  when “worry” fails to motivate you, when it begins to paralyze you; it is no longer your friend, it’s the enemy.  It steals your ability to look out from yourself and to REALLY see those around you.  It’s self-centered.  It causes you to snap at loved ones, to demand the impossible, to elevate your blood pressure, and to miss out on some pretty great things.  Things like:  peace, joy, inner strength, kindness, compassion….  And the list goes on.
 
3. I’d be more courageous.  Fear.  That great nemesis of us all.  It freezes us in our boots if we let it.  And, by golly, I have let it do just that!   I kept thinking, I’ll try that when I get older.  Well, guess what readers?  All you get as you get older without testing the waters, is greater fear and a larger variety of fears!  Here’s a sampling of my fears: afraid to hike alone (thank you hubby for that one), fear of going to a movie alone, fear of inconvenience or awkwardness, fear of exercise classes, fear of bodily injury, fear of asking for things, fear of showing my fat ankles, fear of disappointment, fear of confrontation, to name just a few.  And what has all this fear gotten me?  One word:  Lack.  Lack of enrichment, lack of personal growth, lack of physical stamina, lack of personal strength, and lack of ADVENTURE.  Due to the thoughtful gift of a sweet friend who knows I struggle with fear, I have begun to try new things.  Like, I tried Indian food for the first time. I made a new acquaintance, I am taking on a new venture (Days for Girls), I hiked a new trail BY MYSELF.  And what do I have to show for it?
 Just some worn out shoes, a big fat smile and a little less fear!!  I’ve even tried to not run away from confrontation or disagreements.  Not so many smiles there, that one is still really tough..
 
4. I’d be more honest.  Now, I’m not implying that I’m a “liar, liar, pants on fire”.  But sometimes I’m afraid to be real or AUTHENTIC.  It would be so refreshing to say what I think (with kindness, mind you) and to put myself out there the way I am.  No apologies, subterfuges, excuses or worries about what people might think of me. 

 I remember years and years ago, finding out that some peeps (barely acquaintances) had been talking bad about me.  Instead of feeling betrayed and hurt, I was shocked!!  I mean, who was I that they’d waste their time talking about me?  That should have taught me a big lesson; the lesson being that it doesn’t matter how well you dress, how smart you are, how perfect your hair or makeup is, how cute your boyfriend is or even just how good a person you are at heart.  People gonna talk.  And you can’t do nothin’ ‘bout it.  So, I’m trying to just be more honest about who I am, how I live my life, and what I say to folks.  Cuz in the end, it doesn't really matter if you try to impress anyone.  They will think what they think. Better to feel okay with yourself and know that you are who you are.
 

So, yeah, I'm not perfect.  I  I cuss a little and it feels good.  I drink too many sodas.  I have hang-ups and myriad faults.  I.  AM.  HUMAN.  There it is…!






5. I would love more freely.  I grew up in a family where I was pretty sure I was loved.  Most of the time. But, we rarely SAID those words OUT LOUD.
And touch wasn’t much of a thing.  Occasional hugs and pats on the back, leaning on a parents shoulder once in a while were the norm.   

  I married a very loving, touchy-feely, affectionate man.  He says “I love you” several times a day and always wants a hug.  So, instead of fighting it, I morphed. 


I liked that affection in my family.
But, I’ve always been cautious with those outside the immediate family circle.  I guess that’s a sign of the times we live in.  But, let's not talk about that.  I’m speaking about acts of love for everyone;  giving your beanie to a stranger, offering a kind word to a harried cashier, a helping hand to a distraught friend.  I’m talking about more than taking over a casserole or a plate of cookies, which are good things too.  I’m referring to the show of REAL love and caring to someone. 
  Outside my comfort zone?  OOOHHH YEAH!!  That fear of rejection is there.  But, real love, Christ-like love, charity,  does not think of itself.  Only of the person needing that love and kindness.  (I’m preaching to myself here)  Still working on this one too.


 

**So, there’s my SHORT list of things I would do over.  Good news is that it’s not too late to start.  I may look ancient, but there is still time for some, if not all, of these “do-overs”. 



Guess I’d better get crackin’ on that “junk drawer”.

Are YOU Amazing?

Ok.  I’m probably going to offend some people, but this has been on my mind for months, and I gotta unload.  (Disclaimer - politically incorrectness and sarcasm may ensue - I make no apologies)  

Also - Included are pics of some of my most favorite ordinary amazing peeps.

Social media (and just the media) has done something to all of us, and while I use it and have been caught up in it, I’ve begun to take a harder look at the effects in one certain area.  I don't even have a word for this, but let me describe it.  Let’s say Joe or Jane Shmoe has a FB account.  Joe (or Jane) (according to FB) is an author, a fitness guru, an advocate for homelessness, a foster parent, a successful businessperson, lives in mini-mansion decorated by professionals, is good looking and a motivational speaker.  And for the heck of it, he/she can also play the piano like nobody’s business, has ‘rock-hard’ abs, and drives a Lexus.  Joe/Jane and their “fans” post things regularly about who else?  Joe (or Jane) Shmoe.

The Schmoe's

  The limelight sparkles in their eyes, they are perfectly coiffed, waxed, “eye-browed” and they are flush with cash; they are the epitome of all that we wish we could be.  Social media doesn’t post the sleepless, anxiety ridden nights, the times when they have a nasty cold or unpaid bills.  We don’t see Joe/Jane when they are in their ugly sweatpants, when they ate the whole pan of brownies, when they miss appointments or when they have an argument with a significant other.  We only see the shiny and polished side. 

And yet… who do we compare ourselves to?  We gawk and applaud and wish we were more like the Shmoes.  We tell them they are gorgeous, brilliant and, here’s that word, AWESOME.  We want to be like them and in doing so, we compare ourselves endlessly to them.  We give them titles, like “strong woman”, or “strong man” or “going places” or “on the fast track” or “a REAL leader”.  Titles are okay and often necessary, as long as they aren’t diminishing your own worth.  And I really feel like that is what is happening.

Let’s compare Jane or Joe Shmoe to Steve or Susan Steady - or just single parent Steady.  The Steady’s wake up to an alarm clock and hit the floor running.  They get the kids up and ready for the day, getting showered and dressed amid interruptions.  They eat generic cold cereal for breakfast before Steve heads off to his construction job where he is a supervisor  OR  Susan, drops off the kids at school and daycare, swings by the local shelter and drops off canned goods, and then heads to her job as a manager at an office supply store.  They work hard all day, doing what needs to be done.  Susan or Steve gets off in time to pick up the kids and then run them to dance lessons or sports, then heads to the ball-field to coach little league.  They gather for dinner time where the family reconnects before the hectic-ness of homework, chores, and bedtime.  Steve or Susan has never been on the front page of a magazine.  Neither has run a marathon, written a novel, or has a patented invention.  They aren’t necessarily in prime shape physically, nor are they fashionable dressers.  They have never spoken in public, nor do they drive a fancy car, let alone a NEW car.  They stretch and skimp to pay the bills and give the kids what they need.   And in my mind, it takes an INCREDIBLY strong person to do this day after day for 20, 30, 40+ years with little or no praise other than a quick hug and a ‘thank you’. 

Here’s the kicker;  the Steady’s do this every. single. day.  For years.  It’s not the occasional blurb on the internet.  It’s not just the picture in the newspaper.  It’s not just the fanfare of a weekend race.  It’s every day.  This, folks, is true STRENGTH.  Sound familiar?  This is most of us! It takes strong people to do this day in and day out without all the glitz and glamour and applause of the world (or Facebook).  AND WE ALL DO THIS!  Every day!  

We push the vacuum, fix the leaky faucet, and run to the grocery store; we try to keep up with the laundry while drying tears (often our own) while cleaning up what the dog did on the floor.  We deal with sticky kisses and disappointments and bounced checks and cars that need fixing.  And every night when we go to bed we know we will do it again the next day.  And why do we do it?  Because there ARE sticky kisses and too-tight hugs and tears that need to be dried.  There are jobs to be done and people to aid.  There are unmet goals we want to meet and there are smiles waiting for us when we help a friend.  Most of all, there is the warm feeling that comes when we can look in the proverbial mirror and feel that we did it; we made some small differences, we made it through another day and there were some dang good moments in that day. 

Ordinary peeps - untouched and amazing!

It’s time we start applauding ourselves in the privacy of our minds and hearts.  The world doesn’t need to know all that we do.  It’s just us and God that needs to know.  You, I, We are the bright faces whose praises aren’t sung for  society's accolades.  But we can sing our own praises in our hearts.  We will only have time to realize our own greatness when we stop racing around trying to be that photo-shopped perfect person on your computer or TV. 

 Look inward - not outward.  Slow down and think for a minute:

“Who is AMAZING?”  

I’ll tell you. 

YOU ARE!