Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Friday, October 28, 2011

Bathroom Talk

Children diagnosed with Prader Willi Syndrome often suffer from low muscle tone. In my son Nicholas, this weakness effects more than just the strength of his muscles, it also effects many of his internal systems, things like breathing, digestion, even his heart rate.

It also effects his intestinal tract. Constipation and difficulty in his ability to "go" are some of his more common ailments. Please pardon the bathroom talk...

As a result of this slowed elimination process, Nicholas spends a lot of time just sitting in the bathroom. Now, for my son Weston, this would be a huge problem since sitting still for any length of time is nothing short of torture for him. But for Nicholas, spending time alone in the bathroom has become one of his new favorite pastimes. It is his own private oasis, a quiet place to sit, talk, sing and enjoy his own company.

Today, Nicholas and I have just returned from an appointment with his orthopedist.  We enter the house and Nick announces he needs to go to the bathroom. He has acquired this interesting " I gotta go" announcement behavior from Weston, who for some reason feels compelled to formally announce to me every time he needs to go to the can. Why, does he do this, you ask?... I have noooo idea.

Anway, Nicholas goes into the bathroom while I start to prepare lunch. When I hear....

"Da da da da Dora......Dora, Dora Dora the Explorer..." The sound of soft singing drifts merrily from behind the bathroom door.

"Swiper no swiping..." he sings, scolding the poor imaginary fox.

Then suddenly the singing stops. I hesitate for a moment before smearing peanut butter quickly on his sandwich.

I listen closer. The sound begins again only this time I hear conversation.

"Hey Tommy, we need to change his dipeeee." He says

"What do you mean WE?" he answers.

And I realize he is now reciting one of his favorite scenes from Rugrats. The conversation continues for a good five minutes. He is comforted by the familiarity of this repeated scene. Suddenly, once again, the conversation stops.

It is quiet for a few seconds....I walk slowly over to the bathroom door to listen.

"I am Lightening! Lightening McQueen....rrrrrrccccckk!" shouts the talking red plastic race car that I assume was left abandoned in the bathroom from a previous "Nicholas" visit.

"Vvvrrooooom, vrooommmm, kachink!" the cocky race care exclaims, Nicholas giggles hysterically.

Then, once again. Silence.

Not wanting to disturb my son's amusing pantomimes, I hold back my laughter and peak inside the crack in the door where I see Nicholas sitting on the toilet now looking at his reflection in the window on his right. He is beginning a conversation with himself while simultaneously watching the movements of his mouth in the window.

"We need to find the troll bridge," he says, "Can.....you.....find..... it?" he asks and begins gesturing with his hands, pleading with himself to find the bridge. He is continuing to watch himself in the window and is enunciating each word very slowly. He moves his head left to right, studying the variety of expressions he is exaggerating on his face.

Suddenly, he turns toward the door. I pull my face quickly back, hoping he hasn't seen me.

Again, there is silence for a moment as I stand motionless behind the door, holding my breath.

Slowly the soft singing begins again as I hear Nicholas start to recite the rainbow song.

"Red and orange, green and blue, shining yellow, purple too. All the colors that you seeeeee......."

He holds the seeeeeeee for a few seconds and continues,

"Live up in the rainbow!" He finishes the song and claps his hands.

Nicholas has now been in the bathroom for 15 minutes. I am about to knock on the door to hurry him along, when I stop myself.

I reflect back to when he was a baby and how his low muscle tone had made him tire when he drank from his bottle. Doctors used the term "failure to thrive" and he was placed on a feeding tube. He was called a slow feeder. I worried that he would not gain any weight.

When he was two years old, he finally learned to walk. He was called a slow walker. I worried that he would never walk.

Speaking, writing and running all took longer for Nicholas than most children.  He was called a slow starter. I worried that he would never learn to do any of these things.

At first, Nicholas's delays, his slowness to acquire skills, made me concerned and anxious. To me, the word "slow" was synonymous with "worry". It was a disturbing concept.

But today I realize that once again my son has taught me to embrace that which I fear.  He has taught me to value the beauty of slow.

He lives his entire life moving slowly and deliberately, enjoying every moment of his life. He is on his own schedule. He embraces that extra time he needs to do things. He never worries about wasting time or getting there fast. He lives in the moment. He creates enjoyment out of the most mundane of everyday tasks. He performs these tasks while singing, dancing, loving and just living.

I decide not to knock on the bathroom door. I go back to the kitchen to continue listening to my son's delightful bathroom antics. I am listening to him enjoy his life. As I listen, I too laugh and enjoy my life just a little bit more.

I return to making Nicholas his lunch, only this time, I take my time. I make his sandwich slowly and deliberately taking time to stop and smell the peanut butter.

Click here to visit me today at Hopeful Parents


The Henrys said...

I posted a comment over on Hopeful Parents but I'm not sure it worked.

I just wanted you to know that this is one of my all time favorite posts. It made me laugh and cry at the same time and it is just beautifully written. Thanks for sharing this story about Nicholas and reminding me that it is okay to slow down and enjoy things more.

Also, as you said, it is funny how we have never met, but are connected. What ever would we do without this world of blogging?

Finally, I actually thought of Nicholas when I posted the Halloween pictures on my blog! I remembered how much he likes Halloween and would love if you lived closer so you all could come visit!

Isaac's Mom said...

Love this post!!! Nicholas sounds like such a joy!!!

DaddyMatt said...

Thanks for the insight. My wife and I are in the process of adopting a boy with PWS. Your posts are very helpful and entertaining.

You give me courage.

Lisa said...

Thank you all for your comments.

DaddyMatt, Congratulations to you and your wife! You are both so very brave. You will find that there is alot of support available to parents. Our national organization PWSAUSA is a great place to start if you haven't already. Much of what I have learned was shared with me by other parents in this organization with similar issues.

Please remember that although it may be an exhausting and difficult job raising your son it will also be the most wonderful and meaningful experience you will ever enjoy.

Just remember to seek help when you need it and try to relax and enjoy the ride.

If you or your wife have any questions, I would be more than happy to answer any of them for you. Best wishes to you and your new addition to the family.

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