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.




Wednesday, December 31, 2014

A Happy Gentle New Year


To All Our Dear Readers......
 
 
Wishing you all a very Happy and Healthy New Year!
Thank you from all of us for your support and friendship.
We wish you much joy in the coming new year.


To continue my yearly tradition, here is some insight into the animal symbolism of the coming Chinese New Year.

Thankfully, the Year of the Horse is coming to an end.....so, was I right or what?
A fast, bumpy ride that is over already. Can you believe it?


Horse years are fast and furious. The status quo is disrupted, change (good or bad) comes about quickly. Horse years are all about motion. You may find that your life is much different then it was at this time last year. Things that happened, happened quickly.

Horse years are also about moving fast as an individual, running your own race and charging toward the finish line. Well, hang on to your hats folks for things are about to come to a rather abrupt stop. 

The speed and fury of last year is coming rather quickly to an end with the arrival of the Year of the Green Wood Sheep which will begin in February. Compared to last year, things are going to appear as if they are moving in slow motion.

Sheep years are not about movement, activity, or individual effort. They are about slowing down and working together as a passive, peaceful collective.



Sheep years are gentle years. They are about settling down and letting things happen naturally. The dust from last year's race begins to settle. Big steps toward peaceful resolutions are possible with the coming of the sheep.

Because this sheep year is green and wood, the calm, peaceful nature of the sheep is further emphasized making this a truly unique and tranquil time, a time for quiet walks in the country with the ones you love, group nature hikes or family camping expeditions. It is a time to relax and let nature take its course, cupids arrows are more likely to hit an object that is not in motion. Love is in the air.

A green wood sheep year is a time for spending with Mother Nature. It's about being outside, grazing quietly with others, giving us the time to think and reflect, a unique opportunity to put the events of last year into perspective. And although these years are about togetherness, like a flock of sheep, each individual's needs are met entirely with little to no effort exerted.

It is about nature, togetherness and rest. It is about finding our own peace by doing nothing but aligning ourselves with groups of quiet, gentle others.

Sounds like a refreshing change doesn't it?

Tuesday, December 30, 2014

Special Needs Parenting Mid Life Crisis

Parenting children diagnosed with special needs requires an insane amount of selflessness.

This is not a choice, it is a requirement.

The high level of responsibility assigned to me simply by the birth of my child, created a chaotic new lifestyle for me filled with doctor appointments, therapy sessions, IEP meetings and fruitless phone calls with apathetic insurance companies. Amidst this hectic pace colored by red tape and white coats, there is little time left for fun, frolic or self indulgence.

The first few years of living in such a hellish environment was an abrupt change for me and required a long period of adjustment. I was shell-shocked and survived this traumatic experience by entering a fugue state, moving and speaking without conscious thought.

What I have discovered lately is that after 13 years of moving and not thinking, of performing selfless acts of bravery again and again,

I have become restless.

There is a desperate need within me for defiance, rebellion and extreme selfishness.

Perhaps it is my age, my hormones or just plain old boredom, that has sparked this insurgency, but whatever the reason, I am longing for an adventure, a risk, a chance at last, not to play it safe and ensure the high quality of life for another. I want to throw the dice, risk it all, throw caution to the wind, feel the fresh air on my face as I jump out of an airplane at 30,000 feet.

I want to feel alive.

I believe I am experiencing a Special Needs Parenting Mid Life Crisis.

Typically, I am a play-it-safe kind of a gal. I am fearful of heights, deep water and fast moving things. But lately, I must admit, if an intriguing stranger arrived in a limo at my front door with a bottle of champagne and two tickets to Hawaii for some para sailing, surfing, and rock climbing type adventure, I would leave in a heartbeat.

I admit it.

I want to run away.

This childish feeling is my reality, and what happens to those of us whose lives are devoted to the long-term complex medical care of another.

I long to do things like this:


and this


and this


and this


yes......even this.....


I feel the need to sit here:


to hike here


or to feel the spray on my face here


I am not a psychiatrist.
 But I believe that the intense effort I exert daily
 to keep my children healthy and safe
has created in me,
an unusual need to take some ridiculous risk,
to balance the constant need for sureness
with an adventurous sampling of the unknown.

In a word, I believe I am looking for this:

Freedom

Sunday, December 28, 2014

The Mad Scientist

It appears that my ingenious idea for an appropriate Christmas present for the boys, may not have been such a clever one after all.

 
Not such a "carefree" environment

Let me explain.

When I was a kid, I took a trip to our local fair and won a fish by successfully throwing a ping pong ball into a goldfish bowl. You may remember the game?


But the thrill of my victory was short-lived and poor Romeo was in his glass bowl where rarely, if ever, his water was changed. Despite a few failed attempts at jumping-out-of-the-bowl suicide, this fish was indestructible, living for many years, in stagnant and murky water.

 Perhaps it was the memory of that hardy, low-maintenance fish that made me believe an aquarium would be a more humane and easier environment to keep clean and display a few furless, finned friends.

Well, my dear readers, it appears that I am aquatically ignorant.

With the introduction of our new aquarium, I have become nothing short of a mad scientist.

 
Who knew, there were things like ammonia, nitrates and chlorine levels that need checking. Who knew that cycling a fish tank is the first step in preventing what's called New Tank Syndrome, a toxic form of cloudy water that can kill a fish as fast as you can say "love that dirty water"!

I have been doing my best to perform test samples of the water, checking the pH and ammonia levels. I have made frequent water changes. I have mixed unusual concoctions of powders, liquids and noxious chemicals. All of this to ensure a crystal clear environment that promotes the favorable well-being of our newest family member.

I have become obsessed.

My new lifestyle caring for this aquarium has become like a new mission in life for me, a lifelike microcosm and all-too-familiar representation of the role I play every day in caring for my children.

What on earth was I thinking?

Friday, December 26, 2014

Merry Fish-mas

If you are a long time reader of our blog, then you know my boys are SpongeBob SquarePants fanatics.

They are maniacal about their obsession.

The dinner table is often the preferred arena for reciting lines from their favorite episodes.

This bizarre behavior has not escaped the notice of Jolly Ole Saint Nicholas.

And so, the ever omniscient observer in the red suit brought them this ingenious invention:



We had a ball setting up the "absorbent-and-yellow-and-porous is he, pineapple-under-the-sea" environment.

This is by far, one of my better finds for Christmas presents. The boys loved it. It was very inexpensive and came with everything, except the fish.

Of course it is a good thing I accounted for the "Lisa Factor" and purchased two of the aquatic coral critters because one of them decided to check out early....thankfully before the kind hearted Nicholas noticed. Oy.

Wednesday, December 24, 2014

Merry Christmas to all, and to all a Good Night

Just heard the most joyous news this week,

I am going to be an auntie to my first nephew next year.

The news is already bringing much peace, joy and love to our extended family.

We are wishing all our family, friends

and you dear readers, a very Merry Christmas and a joyous New Year.

Merry Christmas to all and to all a good night!

Tuesday, December 23, 2014

'Tis the Season

For most folks, December is a time for fun, festivities and preparing for the holidays.

For parents of children diagnosed with special needs, it is a time for preparing for something else.

The dreaded IEP.

For me personally, it is a time to begin the discussions about Nick's placement for next year.

And so, let the games begin....


This year, I made a mistake however, and scheduled both of my children's IEP meetings within a few days of each other.

What was I thinking?


Our pit bull,

I mean advocate... has a unique "bite your face off" kind of style, designed specifically to inhibit me from deluding myself. It may sound inappropriate, but it is absolutely necessary in the process of making me painfully aware of the reality of school negotiations. For it is the LAW that we must follow and not always what is BEST for the child that prevails.

I truly appreciate our advocate, for I need to see this reality in order to correctly prepare for it.

But no matter how hard I prepare for my mauling, I am never ready for it.

Because when it comes to Nicholas, who is thriving in his current environment, it is a painfully difficult pill to swallow.

I must admit, the first round of meetings has got me feeling like this....


But in tearful discussions with hubby last night, he explained that while he would love to offer me comfort and sympathy, he knows, in his heart, that this is not what is needed. He said I remind him of a scene in Predator where the elite soldiers are fighting the terrifying beast when one of them exclaims:


I am thankful for the upcoming Christmas break, and a chance, this time, to try to stop the bleeding.

Thursday, December 18, 2014

Serious about Circulars

Nicholas is my constant companion.

Unlike his brother Weston, who has entered the "My Mother is the Most Embarrassing Person on the Planet" phase. Nicholas, on the other hand, loves to accompany his mom on errands. To the drug store, the post office, the gas station or grocery store, wherever I go, Nicholas loves to assume the role of my faithful sidekick.

Now, while I like to believe it is my irresistible effervescence and pure mummy magic that motivates my young boy to want to ride along with me, what I have discovered, lately, is that it may actually be...something else, a deeper need that's being fulfilled, a longing for something colorful.

I have noticed that in many of the locations we visit on a regular basis, like CVS and Market Basket, there is always one of these.

 
You've seen them. The circular displays with newspapers advertising the company's weekly specials.

Nicholas loves them and never passes up an opportunity to take several of these free publications. At first, I thought he took these brochures simply because they were free. What I have discovered in my literate lad is that he loves to look at what's available, what's for sale and more importantly what he might enjoy.

Perhaps not surprisingly for a child diagnosed with Prader Willi Syndrome, there is one circular he adores more than all others....


It is the one from Market Basket, our local grocery store. We have so many of these circulars from Market Basket, we could probably wallpaper our living room with a colorful collage of cold cuts and cottage cheese.

I know what you're thinking...isn't it kinda mean giving him photos of food? What I have discovered is exactly the opposite. The photos seem to comfort him. He enjoys choosing his favorite items and sounding out the words of the unfamiliar products, like pomegranates and clementines.

I do believe it has also assisted him in learning how to become a better reader as he enjoys reciting his favorite sale items to me each week.

"Mom, Market Basket has Canada Dry Ginger ale on sale this week." he'll announce with glee or

"Did you know they sell pumpkins at the grocery store!"

 Yes, to my son Nicholas, the Market Basket circular is a highly preferable and informative piece of literature.

Move over Dr. Seuss, there's a new leaflet in town!

Tuesday, December 9, 2014

Little White Houses for You and Me

One of the biggest hurdles I face as a parent of a child diagnosed with PWS is conquering my fear, particularly my fear of the future. There is not a day that goes by that I do not wonder in some way, what Nick's life will be like.

What will happen when I am not there to guide and protect him? How will he manage on his own? Will he be happy? Will there be a therapy available by then that will help him to manage his uncontrollable urge to eat so he may live on his own? Will he find love?

What I have noticed in my sensitive son is a unique ability to answer these specific questions and address the gnawing fear I hide. It is almost as if he has a magic mirror that looks directly into my soul. Without me saying a word, he understands the pain in my heart and addresses it directly.

Lately he has been telling me things like this:

"Mom will you come and visit me in my home when I am older?"

"Yes, of course I will Nicholas. I can't wait to come over for a visit. Where are you going to live?"

"I am going to live in a white house with two white garage doors and a silver front door. I am going to have a garage door opener that is grey. There will be a white key pad on the wall. I will have a red brick gas fireplace that will turn on with a clicker. Don't worry Mummy, I will let you click it on and off."

"That's great Nick are you going to have any children?"

"Yes, two."

"Girls or boys?"

"I am going to have two girls, Dora and Milly. I am going to cook you dinner when you come and visit me. And sometimes we will go out together. We are going to have so much fun."

With a contagious enthusiasm, Nick's provides many precise details of his vision of the future, so much so that I find myself actually believing him and wondering if perhaps this is his intention?

With the purity of his belief and the intensity of his optimism, once again it is my son Nicholas who teaches me of life, encouraging me to embrace tomorrow and see it for what it really is...just another opportunity to share love with others.

I believe in his dream.

Little white houses for you and me.

Monday, December 8, 2014

Jolly Old Saint Jack-o-Lantern

 

My son, Nicholas has a warm and loving heart. When he loves someone or something, it is with his entire state-of-being. Heart and soul, head and spirit, it is a love as deep as an ocean.

To say he becomes attached to these objects of his affection, is perhaps an understatement. When it is time to put away seasonal decorations, he has trouble letting go. This Christmas was no different, as the lovable lad refused to let me put away our light-up jack-o-lantern.

"But why Mummy? he asked, "Why do we need to put my best friend in the closet?" Large tears begin to swell in his eyes as the soft-hearted Nicholas fears for the winter welfare of his tiny, orange friend.

"Can't we keep him out, pleeeeeease? he begged.

Now, I must admit, at first, the perfectionist in me became horrified. My brain's initial response was confusion. Leftover Halloween decorations mixed in with Christmas trim? That's not how it's supposed to be. But as the parent of a child diagnosed with PWS, I have learned to let go of  that kind of thinking. I have learned to forget about "how things are supposed to be".

Living with PWS, has made me resilient. I have learned how to roll with things. I have learned how to accept the unacceptable and most importantly how to embrace the unusual.

"You know what Nicholas," I responded, "Why not!"

I found Weston's old Christmas hat and placed it on the grinning gourd.

"Watch this Nicholas, I told my sensitive son, "Nothing up my sleeve, presto!"

"Jolly Old Saint Jack-o-Lantern!"


Nicholas claps his hands and giggles with glee.

There is no trauma, drama or tantrum, there is only joy.

Poor Mr. Pumpkin is saved from eternal exile in the closet.

Nick's deep and loving spirit is saved from heartbreak.

And me?

I am saved from myself.

I guess it is only fitting that a house with a Menorah and a Christmas tree should also possess a Halloween pumpkin or two.


Sunday, December 7, 2014

Return of the Roaring, Red Firetrucks and the Red-Suited Man

If you are a long time reader of our blog, you may remember that every year Santa Claus makes a rather unusual appearance in our town.

Courtesy of our local fire department, jolly old Saint Nicholas fires up his sleigh for a one-time test drive throughout the local streets of our community. He is paraded through every road in town by a long line of roaring, red fire trucks. His magical sleigh is perched upon an antique fire truck that is adorned with thousands of twinkling lights.  Accompanying the Big Man in the Red Suit, is a jumbo inflatable Frosty-the-Snowman who rides in a row boat collecting toys from local citizens that will be donated to the Toys for Tots Program. The firemen blast their horns and screech their sirens waving to the hundreds of cheering residents along the way.

It is a loud and colorful procession lighting up the country streets in a fun and festive display. It is without a doubt, a dream come true for children and adults alike.

 It is impossible not to smile while watching Santa fire his way down the street in a festive flaming red fire truck. We look forward to this event every year. Even the stoic Pete can't help but smile at the sparkling spectacle.

Today, the very tall Weston takes his usual post as scout and lookout at the end of our long driveway.

He acts as a sentry
 listening for the sound of the wailing sirens.
waiting somewhat patiently in the cold, frigid air
as the rest of us wimps sit in the toasty warm car.
 
Nicholas is excited and happy.
He remembers to bring his trusty headphones
and his new toy to donate to Frosty.
This year he was a little apprehensive about relinquishing the goods.
But after a long discussion about children who do not receive presents at Christmas
the kind-hearted Nicholas quickly acquiesced
but not without asking
why on earth Santa would ever forget the children who need him most?...oy.
 
We waited for about 5 minutes,
long-enough for the wiggly Weston to require assistance from a transition tool,
his favorite item, the trusty stick
the same mainstay device you may recall,
from our summer hikes.
 
It isn't long before Weston sounds the alarm....the trucks are coming.
The rest of us join him on the cold and chilly corner.
You see.....Pete is actually smiling,
and willing to let me take his picture...!
 
The lights of the approaching vehicles are as bright as the setting sun.
When the trucks see us, they begin blasting their horns.
It is very LOUD
and Nick is happy he remembered to bring his headphones.
 
First one shiny red truck goes by
 
and then another
 
Until finally Frosty arrives with a "boat load" of toys
The boys place their toys on board
 
until at long last.....the glowing Santa Claus arrives on his sleigh
Christmas music is playing loudly as he waves to the boys
 
A few more trucks bring up the rear for Frosty and Santa
 
Until the last lighted truck passes us by
 blaring its horn in one long final good-bye
as if to say....
A Merry Christmas to all....and to all a good night. 

Thursday, December 4, 2014

A Menorah for Christmas

This week at school, Nicholas has been learning about the many different ways folks from different cultures celebrate the holiday season. So perhaps I should not have been surprised when he asked me,

"Mom, I want Santa to bring me a Menorah for Christmas."

FYI.......we are not Jewish.

(I write this post with the utmost respect for all religions, customs, cultures and different ways of life.)

If you recall, Nicholas is a lover of all things bright and shiny. He loves glowing candles, roaring fires and twinkling lights upon the tree. When you think about it, lighting a candle every night for eight days, is exactly his kind of celebration.

What is interesting to me, is what he asked next,

"I would like Santa to bring me the electric kind, so I can put it beside my bed."

So, after a lengthy discussion with Nicholas about the difference between Chanukah and Christmas, and the importance of both to each culture, he asked,

"But Mom, why can't we celebrate both?"

So, in honor of Nick's spirit to embrace and respect other points of view, Nicholas will be receiving a Menorah for Christmas. And perhaps a few other religious or cultural symbols..... depending on what Nick learns at school.


 Dear reader, may you enjoy this holiday season no matter what your culture, religion, color, disability, nationality or particular point-of-view.

In the true spirit of the season,

We are one.