Posted in Autism, Down syndrome, Fun Side of Nick

Nick’s 21st Birthday

Nick’s 21st Birthday

Big Guy turned 21 this past Saturday.  We threw a party and Nick had a blast.  Here are a few snapshots of the day:

Party favors…..Theme red solo cups and Thomas the Tank engine, only in Nick’s world!

red cup favors

I made a toast thanking caregivers, therapists, family and friends for their support with Nick (who has Down syndrome and autism) over the years.  Nick followed it up by flashing the crowd.  Looks like we have some new members added to the “belly flashing club”.  🙂

Nick belly flash 21

Chocolate cake, Nick’s favorite…..

Nick 21 cake

New sensory toys from his occupational therapist…..

Nick sensory toys

Cheers and down the hatch!  Don’t worry, he didn’t slam the whole thing.  Nick’s brother Hank, handed him the last half of his beer.  🙂

Nick chug beer

It was a great celebration.  We are very appreciative of the generosity from our family and friends.  Thank you for all the well wishes and touching sentiments.  That’s what is in my noggin this week!

~Teresa

 

 

 

Posted in Autism, Down syndrome

Blog #111~ Constant Child

 

Blog #111~ Constant Child

Last Saturday morning, Nick watched the same DVD over and over.  It was a continuous loop of Thomas the Tank Engine’s, “A Big Day for Thomas”.

Thomas the Train

Twenty years later I didn’t see myself listening to the dialog, and able to recite every line.  At this rate, there will be no break between Nick watching Thomas and my grandchildren following suit.  I can see it now, Hank Jr. saying, Hey Uncle Nick want to watch Thomas the Tank Engine with me?”  I also didn’t imagine stumbling over plush toys that my son dropped from the second floor.

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I didn’t picture myself scrubbing red marker stains off his clothes at age twenty.

Note to school staff:  Markers + Nick = Skin, and Clothes…….

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This got me thinking, having Nick is like caring for a constant child.  Nick is twenty years old and he has Down syndrome and autism.  He can’t stay at home by himself and requires continuous supervision.  Don’t get me wrong, he has made strides doing much more independently (like unloading the dishwasher, putting away groceries, recycling, vacuuming, etc.).  And he does watch age-appropriate movies and listens to grown-up music on his iPod.

Nick tabor hills

But at the end of the day, I’m still wiping snot off the flat screen TV and microwave.  Out in public, he can never be more than arm’s length for fear he may take off running, or to pull a fire alarm.

30 Fire Alarm pulls since 3rd grade. Is there a bumper sticker for that?

firelite-pull-station

I’m not writing this to get sympathy.  I’m simply putting a lens on what the world looks like having a young adult with Down syndrome and autism.  It’s not the end of the world.  But it is a very different world, then I expected.  The stimming, banging, tapping, yelling, dumping, phone intercom and microwave button pushing is constant and mind-numbing at times.  And you never know what he’s going to drop off the top of the staircase.  All I can do is continue working with him to foster independence.  I’ll keep redirecting his inappropriate attention seeking behaviors and have him clean up his messes.

I’ll take Stuart Little and Dora the Explorer over shaving cream any day……

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I will remind myself that the laughter, silliness, sweet kisses and unconditional love of this constant child helps to offset the rest.

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That’s what is in my noggin this week.  Now back to operation red marker removal. 🙂

~Teresa

 

Posted in Autism, Behavior/ ABA, Down syndrome, Fun Side of Nick

Blog #86~Down syndrome and Autism…Boy to Man

Blog #86~ Down syndrome and Autism… Boy to Man

I find it mind blowing that my son turned 20 years old.  What a strange dichotomy.  In many ways he is much like a child.  Nick still watches Thomas the Tank Engine DVD’s and plays with kiddy toys.  He needs prompts with grooming, dressing and navigating throughout the day.

nick and stuart little

He is small in stature, and at first glance you might mistake him for a middle school aged student.  But if you take a closer look, there are signs that he is indeed a young man.  His voice is deep and you can see the visible razor stubble on his chin.  That, and the fact that he likes to sneak a gulp of his Dad’s beer on occasion.  🙂

Bottoms up Nick……

nick drinking beer

At Nick’s conference last week, a poignant question was raised.  What are his barriers for increased independence?  For Nick it is his impulsiveness.  It’s that need to push buttons, in particular those big red buttons. He can never be left alone.

For those of you keeping score at home, the current count is 30 pulls since 3rd grade…….

firelite-pull-station

In the Down syndrome and autism support groups we all scratch our heads at the antics that our kids come up with.  The reoccurring theme is that impulsiveness.  It’s uncanny, the things they come up with to mess with us.  So often, our stories are similar.  Maybe it’s throwing a shoe out the bus window, coming in like a seagull and swiping something off your plate, opening up the car door while you are driving 50 miles an hour, stripping down buck naked, throwing an iPhone down the toilet, turning the TV volume up to 99, blowing a snot rocket and wiping on the flat screen  or pushing the microwave and phone intercom button repeatedly.

Or dumping an armful of hangers into the washing machine…

hangers in washing machine

Hardy har har Nick, good one!  There are a lot more pictures in Blog #3~Getting Your Goat, located in the April 2012 archives.

Within the framework of the “barrier question” above, it becomes increasingly obvious that these behaviors need to be controlled and contained.  Best case scenario, maybe Nick needs to express his funny side in a more appropriate fashion that is less invasive.  There is no way he could survive in a group home pulling such pranks.

We have two more years in the post-secondary transition program.  On the day of his 22nd birthday the little yellow bus will stop coming to the door.  So, the IEP goals for Nick need to be focused on global independence both in the community and at home.  It’s a bit daunting but then again, so was toilet training him. Somehow we survived that.  I look forward to the IEP next week and seeing how his program can be shaped to foster a more mature adult version of Nick.  That’s what is in my noggin this week!

~Teresa