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.

IMG_3879

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

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

IMG_3881

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……

photo (20)

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

0805092203

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

~Teresa

 

Posted in Autism, Down syndrome, Feeding, Personal Hygiene, Toileting

Blog #104~ Parenting and Discipline

Blog #104~ Parenting and Discipline

I recently was in a conversation with two young mothers of school age children. Both were talking about how much they did for their kids.  One mom commented that her daughter was old enough to make her own bed.  Yet she would do it herself because her daughter did it so sloppily.  The other one talked about scrambling to get the lunches made and double checking to see if all the homework was in their backpacks.  I scratched my head and wondered about this. Why weren’t they using these opportunities to help foster independence in their children?  I think as a mom, sometimes it’s just easier to do it yourself instead of constant reminders and nagging.  But in the long run, this does nothing to teach your child responsibility. Which brings me to my point this week; parenting is not only disciplining your child but also staying disciplined yourself.

When you are raising a child with special needs, it is even more difficult to teach independent living skills. Things take longer to learn with deficits in speech, gross motor and fine motor skills.  The process of putting on shoes and socks can be a ten minute ordeal.  With the bus coming at 7:25 a.m. the morning may not be ideal to use as a teaching moment. But you can carve out chunks of time to practice independent living skills during down times.

My son, Nick is now 20 years old. He has Down syndrome and autism.  Once at a high school conference, his teachers and therapists pointed out how good he was at self-care (in fact the strongest student in the class). I attribute this to three things:

1. Providing those teaching moments to practice skills

2. Using visuals so he can be prompted

3. Staying disciplined in the routine rather than just doing it myself

photo (105)

The most challenging thing I have ever done was getting my son with special needs toilet trained. It is also happens to be the greatest thing that I have accomplished in my life. It was certainly a marathon, not a sprint.  In fact it was the longest and hardest marathon imaginable.  And we stepped in a LOT of poop along the way.

poop icon

When I look back at that road, one thing stands out on how Nick finally got toilet trained. It was DISIPLINE! Yes, I worked with autism specialists, went to potty training workshops and used visuals.  But nothing worked until I disciplined myself to create a timed toileting schedule and stick with it.  This (combined with the fact that Nick finally was mature enough), led to the success of him getting out of Depends and into underwear.  And that was a glorious sight to see. 🙂

It was a long road but we made it to the other side, tada!

IMG04

The importance of staying disciplined as a parent will pay off in the long run. You can’t wipe your child’s bottom forever.  That’s what is in my noggin this week.

~Teresa