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.