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, May 30, 2012

Words I Know...Thanks to Prader-Willi Syndrome

On January 18, 2002, my son, Nicholas was born with Prader Willi Syndrome.

While much of that day is a blur to me now, there is one thing I remember very clearly....the unusually high number of complex medical terms the physicians used to describe my son's diagnosis to me. I remember feeling as though I was a pre-med student who had forgotten to purchase her medical dictionary.

Beside my infant son's bedside, I kept a pen and pad of paper. I wrote down every word I didn't know. Since that day, I have accumulated a rather impressive list.

hyperphasia
acromicria
dolechocephaly
slipped capital femoral epiphysis
cryptochidism
hypogonadism
hypotonia
xerostomia
strabismus
scoliosis
kyphosis
valgus foot
ligamentous laxity
uni parental disomy
dysphagia
cardiac dysrhythmia
Von willebrands disease
gastroparesis
hypoplasia
hypopigmentation
methylation, deletion, imprinting mutation
electrical status epilepticus of sleep
adrenarche
mitochondrial DNA
autonomic dysfunction
hypoprolactinemia
adrenocortical dysfunction
dysarthria

This is the overwhelming list of medical terminology which must be thoroughly understood by parents of children diagnosed with PWS.

I don't know about you, but I believe we should qualify for an honorary Harvard Medical Doctorate Degree!


Tuesday, May 29, 2012

Tooth Pain

Children diagnosed with PWS often suffer from significant dental issues. Symptoms like thick saliva and mouth breathing, caused by low muscle tone, increase the likelihood for developing cavities.

Parents must encourage brushing vigilance with frequent visits to a pediatric dentist, a must.

As with all things PWS, this is easier said than done.

For many years, I visited countless local dentists, hoping to find a professional who could handle the sensory and behavioral challenges that plague my son. None felt comfortable and I was referred, as usual, to Children's Hospital in Boston.

But this was not practical since we live several miles north of the city.

Finally after many discussions with local mothers, I found a pediatric dentist who was willing to take on the challenge of working patiently with Nicholas.

Her name is Dr. Lindi Ezekowitz and she is one of the many professionals in our lives who we have come to love. To read more about her, click here.

Dr.Lindi has worked successfully with Nicholas for many years now, slowly increasing his tolerance for more and more dental work.

This week however, we have discovered that Nicholas has some tooth crowding. Dr. Lindi and I both agree that we should do all that we can to avoid putting braces on Nicholas. Any excessive time spent sitting in a dentist chair is upsetting to him. Since maintaining braces requires a fair amount of "chair time" this seems like an unnecessary form of punishment.

So, to avoid this bracing procedure, we must ensure his secondary teeth have enough room in his mouth to erupt.

"It looks like he is going to need to have a tooth pulled," Dr Lindi says to me. Instinctively, I brace myself for what I am about to hear.

"With Nicholas's clotting issues, I would feel more comfortable if we have an oral surgeon perform the extraction," she says. I am thankful for her honesty as I try to prepare myself for yet another surgical procedure for my son.

"There are some local surgeons I can refer you to," she explains, "Or, if you are more comfortable, we can schedule you at Children's."

"Thanks Dr. Lindi," I reply "Since Nicholas has such a slow blood clotting response, I would feel more comfortable at Children's."

"OK," she says, "we can schedule a consult in June, and hopefully have the procedure done in July."

I try to swallow, but my mouth is dry as I realize our summer vacation may need to be postponed.

"There is something else," she says, and I decide to sit down.

"He has a few cavities that need filling, I would feel more comfortable if I could perform the work at the Franciscan Hospital so he is not stressed. I have some time available in August. We have come so far in creating a good dental experience for Nicholas. I do not want to jeopardize it."

I am speechless as my last hope for some summer fun has now been extinguished.

"I can take some x-rays at the same time, so we can perform all the necessary dental work at once," she says.

I am thankful for Dr Lindi's sound advise and yet a sadness creeps into my soul. Tooth extractions and fillings are simple procedures that most individuals perform in a single visit to the dentist. My son will now have to undergo two surgical procedures in Boston hospital settings. So much for a relaxing summer.

I feel angry that our life is so difficult.

Sensing my disappointment, Dr. Lindi puts her hand on my shoulder.

"It is not always going to be this difficult," she says reassuringly.

I smile halfheartedly and wonder if this is true?

Monday, May 28, 2012

Practicing the Art of Invisibility

In this article written by Susan L. Smalley, Ph.D., she explains that we have become a nation full of attention seekers.

Look at Me: Living in a society of attention seekers  (click to read)

She writes,

"When I look around at the number of bloggers, tweets, wikipages, Facebook friends, and outlets for expression, it seems we've hit a crescendo of ‘look at me' activity, a striving for attention enveloping the globe."

She asks,

"Why is seeking recognition so prominent in the West today?"

and more importantly,

"...what becomes less desirable, as fame and fortune move to the top?"

Her answer?

"Things like civic involvement and spiritual engagement have lost ground. So it seems our society is shifting, with ‘attention-getting' moving way to the top - at whatever the cost."

I found her article to be thought-provoking and embarrassing as I too write a blog and fit her description of those who covet attention.

For many hours I searched my soul trying to reflect on my and other's motivations. Could I find some relevance and examples of what she was describing?

Perhaps not surprisingly, I thought about my role as a mother of a child with special needs. I thought about how I am hopeful that this role has taught me the importance of bringing awareness not to myself, but to my children who suffer from incurable disease. I thought about who and what type of mothers seem to gain the most attention from the media?

It wasn't long before images of this....



And most recently, this....


It is interesting to me, how both images focus our attention explicitly on these mothers.

I wonder if perhaps Dr. Smalley has a point?

In Dr Smalley piece, she describes her encounter with a South American shaman who was "practicing the art of invisibility."

Invisibility creates an inner energy that allows you to focus solely on the powers of observation and learning. Less energy is focused on yourself, more energy is focused on learning about others.

Dr Smalley explains....

"(The South American shaman) said that he could accomplish so much more from an invisible position than one of fame. I've wondered about that quote for a long time but think that part of the reason is that there is greater freedom to act when action is not tinged with attention-seeking. There is likely more energy available to effect change if one is not expending it on promoting oneself.

Turning a lens on our inward experiences with an eye toward detection of such striving may help shift it into our own lives and possibly our collective consciousness.

I think we all need to value anonymity a bit more. Perhaps if we do, we may find ourselves a little bit more content, happy and kind."

Susan Smalley is a behavior geneticist and Professor in the Department of Psychiatry and founder of the Mindful Awareness Research Center at the Semel Institute at UCLA. Their mission is to foster mindful awareness across the lifespan through education and research to promote well-being and a more compassionate society.

Mindful awareness is a practice that comes to us from a variety of contemplative traditions throughout history. It invites us to stop, breathe, observe, and connect with one's inner experience.
Her words resonate with me.

As parents of children with special needs, we are not Tiger Mothers. We are not Attachment Mothers. We are not Helicopter Mothers.

We are Invisible Mothers.


The requirements involved in becoming a parent of a child with special needs include focusing all of our energies on things other than ourselves. We must stop, breath, and observe. In fact we concern ourselves with such things as threading feeding tubes, assembling walkers and interpreting the results of EEG's. We have had our children fitted for back braces and hip harnesses. We have fought with schools, insurance companies and physicians in an effort to convince these individuals to see our children not as unfortunate diagnoses but as human beings worthy of all of our attention.

And yet these heroic acts go unrecognized. They are just part of the daily routine required to save a child's life. They comes as natural to us as breathing.

Invisibility is our strength.

A critical need for parenting a child with special needs is the ability to observe,  to become instinctively mindfully aware. We wear our cloaks of invisibility so that we may observe subtle changes in our children. We can detect even the faintest sound of an oncoming attack, a soaring fever, an escalating behavior, a silent seizure.

Yes, I have joined a legion of men and women selflessly devoted to observing and caring for others. These parents will tell you they have little time to care or worry about themselves. They will tell you they are tired. They will tell you they have reluctantly put their dreams for themselves aside.

They will tell you they feel invisible.

But it is these same special men and women who will tell you that raising their children although heartbreaking and difficult, is the most meaningful and rewarding experience of their lives.

With invisibility, there is observation
With observation there is selflessness
With selflessness there is understanding
With understanding there is meaning

Yes, being invisible has its advantages.

Tell me, are you Mom enough?



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Thursday, May 24, 2012

Puppies, Stars and Clever Toy Manufacturers

As most of you know, Nicholas loves cozy things. He yearns for things like candles, glowing pumpkins and fireplaces. Often, I will find a corner of my kitchen transformed by Nicholas into a warm and glowing scene.


So perhaps I should not be surprised that my youngest son has been hypnotized by the latest commercial craze for kids. He has asked me repeatedly (for the last 3 months) if I would buy him a "Dream Lite".

What is a Dream Lite you ask?

This is a Dream Lite......


It is a soft and furry stuffed animal that also serves as a nightlight, filling a child's bedroom ceiling with bold bright stars and smiley faces....

Are you kidding me?

It is almost as if the designer of this product looked into the very soul of my child to unravel his inner psyche.

It is everything that my sensitive son loves most in this world. It is a happy animal that is soft, furry, huggable and projects colorful stars onto the ceiling!!!!!

Every time the product is advertised, Nicholas comes running.

"Muummmmmmmy! It's Dream Lites!!!!!!!"

"Can I please get one? Plllllleeeeeeaaassse!"

Sometimes I really resent these clever toy manufacturers.

For several months, I resisted, explaining to my naive child just how tricky some toy manufacturers can behave. I explained that sometimes the TV can make things look very cool, but when you receive the product, you can be very disappointed.

"But Muuuummmmy, pleeeeeease?"

Eventually, the persistent Nicholas wore me down and I relented.

I told him however, that I would buy him one only if he stayed in his bed all night for a week.

Trust me when I say, Nicholas would have walked through fire for a year, just to earn the magic glowing puppy. He easily stayed in his bed for a week, and the manipulated Mummy found herself ordering the Dream Lite Doggy for Nicholas.

The UPS man left it on our doorstep yesterday.

Nicholas ran to retrieve the package.....

"Mummy, my Dream Lite....it came, it came!" he shouted with glee.

I was very thankful since I had spent much of the week answering about one thousand "When is my Dream Lite coming?" questions. I don't think I could have handled much more.

He ripped open the package and ran upstairs and into my bedroom closet to see how it worked.

I am happy to report that the stars on the ceiling glow very big and bright. So much for my lecture on the evils of clever toy manufacturers.

Nicholas slept in his bed the entire night.

He decided to bring his beloved dog to school today for show and tell.

It was an instant hit.

I guess this clever toy manufacturer knows a thing or two about the inner workings of the minds of a great many 10-year-olds. And perhaps a few adults too because to tell you the truth, I wouldn't mind having one myself.


Nicholas and his glowing puppy

Tuesday, May 22, 2012

A BBQ Peace Offering

After Saturday's camping catastrophe, Pete decided to make it up to the boys with a family BBQ.

He may not have a lot of culinary creativity, but the man can make a darn good burger!


Of course Muffy knows exactly where to plant herself.


Much more relaxed in their home environment.

Monday, May 21, 2012

Happy Campers?

It was a glorious weekend here in New England, with blue skies, cool breezes and warm temperatures. A perfect time to take the boys on their first camping trip of the summer.

Or so my husband thought.

On Saturday morning, "the men" packed up the vehicle and headed north to New Hampshire and camping country. With tent, sleeping bags, hot dogs and plenty of marshmallows in tow, the happy trio said goodbye to Mom and headed for the pines.

Nicholas loves to camp. His favorite activity is, of course, building a fire. Weston, the adventurer, enjoys exploring the wooded environment. The great outdoors seems to naturally calm both of the children.

When they arrived at the campground, it was deserted. So, they chose a large grassy spot next to the frog pond.



Dad put up the tent with a little help from Nicholas.



I have no idea where his other shoe is, or why he took it off?
To the left are a few of his favorite backpacks he brought, just in case.

Weston grabbed his net to see if he could catch a few turtles, frogs or fish.


It wasn't long before it was time to eat. As I mentioned before, my husband has only a few foods that he knows how to prepare. Most of them come in a bag, box or can. Spaghetti O's happens to be one of his favorites. A nutritionist, he is not! I had to sneak a few apples and oranges into the food box when he wasn't looking.





Nicholas was very happy when it was finally time to make the fire.


No camping trip would be complete without these......


It wasn't long before darkness settled over the campground and our happy threesome climbed into the tent to sleep.

Now, I do not know what happened over night, perhaps it was some kind of fearsome forest fairy that put an angry spell on the camp, but when the boys awoke, this happy camping trip to the mountains, suddenly turned into the excursion from hell.


Like most children diagnosed with special needs, transitions and different environments can cause both of my children (and my husband) to develop volatile and cranky moods. I am usually there to diffuse the tension and stop the drama from escalating into full-scale war. But this morning, I was at home alone, leaving my poor husband overwhelmed and defenseless, unprepared to handle the oncoming barrage of non-stop bickering.

"I'm hungry," screams Nicholas, waking up Pete from a restless sleep on a deflated air mattress.

"Nicholas, you woke me up!" shouts Weston as the entire campground awakens to two tantruming terrors.

Pete, still groggy from his lack of sleep and void of any caffeine, is not prepared to handle the oncoming tempest.

"BE QUIETTTTTTT," he bellows.

Both children start to cry.

"That's it!" says Pete and he starts to disassemble the tent.

Like Weston, my husband, Pete also suffers from impulsivity and an extreme lack of patience.

Without his extra large caffeine-infused morning coffee, he is just not able to tolerate the out-of-sorts siblings.

Throughout the cacophony of continuous crying, Pete packs up the campsite in record time.

He throws the children into the car and leaves a patch of dust and dirt as he exits the campground.


At the lovely time of 6:30 in the morning!

I don't know but I think it may be a while before Pete tries camping with the boys again!


Happy Campers???

So much for my quiet time at home alone.

Friday, May 18, 2012

Juggernauts and Clueless Mothers

I  am trying to understand the complex world of boys. Weston is now 13 and I must admit I am still in the dark.

Spring has finally arrived in New England and the weather has started to warm up with temperatures this weekend expected to be in the low 80's.

And yet, as he prepared for bed last night, my unconventional, young son decided to dress like this ...


"Weston, why on earth are you dressed like that?" I asked. "It's springtime, not winter. I hope you're not going to sleep in that?"

"I'm a Juggernaut, Mom." he replied matter-of-factly. "I need my protection."

"What's a Juggernaut?" I asked, cringing at the thought of what I was about to hear.

"Hhhhhmmmppp," he replied impatiently, as if I had just won the award for "Most Clueless Mother in the World"!

He sprang over to his desk in the family room, and pulled out a messy collection of papers and drawings. He sorted through his graphic, hand-drawn renderings of tanks, army soldiers and red Lamborghini's and showed me this......


For those of you as clueless as I, this is a Juggernaut. It is one of a variety of characters in the latest boy's video game craze.

A Juggernaut is a literal or metaphorical force regarded as mercilessly destructive and unstoppable.

I guess I should not be surprised that my active young son can relate to this type of energy.

There does seem to be a resemblance.

Now, if I can only figure out why on earth he takes this to bed?



Wednesday, May 16, 2012

What's New Pussycat, Wooooah

Nicholas loves to watch movies, one of his favorites is "Flushed Away"


At the very end of the movie, as the credits start to roll, the song, "What's New Pussycat?" by Tom Jones starts to play. For those of you who are not old like me, this is Tom Jones, singing "What's New Pussycat?"


Back in the old days, Tom Jones was the "it" man. He had a weekly television variety show. Women everywhere went crazy for the sexy man who could really sing. He had an "Elvis-like" quality, with the innate ability to make women feel like he was singing directly to them.

Although unfortunately, I have never met this handsome man, my young son has somehow acquired his gift.

"What's New Pussycat, wooooaaaahh," Tom starts to wail.

Immediately, Nicholas searches furiously for his Dora backpack.

He grabs the purple pouch and starts serenading the lovely photo of Dora the Explorer on the front.

"What's new Pussycat, wooooooaaahhhh," swoons Nicholas



"Pussycat, pussycat, I've got flowers and lots of hours to spend with youuuuuu," he sings lovingly to Dora's smiling face.


"So go and make up your big little pussycat eyes."


"Pussycat, Pussycat, I love you, yes, I dooooooooo..........."



As my sensitive son sings his loving heart out to the lovely Dora, I realize......

The sexy and suave, Tom Jones has nothing on this kind and warm-hearted little casanova.

In fact, I think my soulful son could teach good ole Tom a thing or two about love!

Sunday, May 13, 2012

Happy Mother's Day


I dedicate this post to
all mothers of children diagnosed with special needs
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Thursday, May 10, 2012

Pete's Preschool Party

Yesterday was Pete's birthday. This year he wanted Nicholas to pick out his cake.

Of course he chose one of his favorites, Diego, the Animal Rescuer.

We used Teletubbies plates that were left over from Weston's second birthday party.

And what did my husband ask for?

A fancy dinner in an expensive restaurant?

A night out dancing on the town?

Nope.

My easy-to-please husband, wanted a family night at home.

His preferred meal?

Why taco's of course!

Happy Birthday dear husband of mine!

You are truly one in a million!
xo

Wednesday, May 9, 2012

The Jewelry Thief

Like many individuals diagnosed with Prader Willi Syndrome, I too have a propensity to be obsessive compulsive. My son Nicholas shares this quirky characteristic. Unfortunately however, our compulsions are often in direct opposition to one another.

And we begin our battle of competing compulsions.

I am the clutter police. I like to keep things neat and put things away.

Nicholas likes to explore...


I like to keep the boy's bedding smelling fresh and clean.


He screams bloody murder whenever the sheets approach the laundry area.




I like to take down the Christmas decorations as soon as humanly possible.



He likes to keep them up for the entire year.

Lately, however, Nicholas has found a new obsession.

My jewelry.

He likes to confiscate my jewelry box, opening and closing the decorative container. To him, it is like he has found a chest of gold. He pulls out each glittering item and like a pirate, he smiles as he admires the precious jewel. He holds my dangling earrings up to the light and watches them sparkle in the sun. Bandit, the cat is often his partner in crime, drawn to the twinkle of a gold necklace that is held up for him to bat.


I wouldn't mind so much, except that my few pieces of decorative jewelry have a habit of showing up in the oddest of places.

I once found a rhinestone earring in one of my shoes.

I found a gold necklace on the window sill in the bathroom.

I even found my favorite Christmas pin tucked into one of his pencil boxes.

Yes, Nicholas's habit of hiding my rather scarce supply of baubles, makes it difficult for me to dress for a special occasion. I must now build in an extra twenty minutes in to my grooming schedule to give me ample time to search for my "buried treasure"!

Perhaps I should invest in one of these?



Monday, May 7, 2012

Weston Gets Nominated

We received a call on Saturday from the middle school principal.

My heart dropped into my stomach.

This knee jerk reaction occurs every time the principal calls me.

But then I realized it was Saturday, Weston was playing quietly at home and completely unable to get into any kind of trouble at school.

Pheeewww.

The principal informed us that he had nominated Weston to open Monday's town meeting by leading all of the citizen's in the Pledge of Allegiance. He said that he believed Weston would be a great representative for the school.

I do not know if I have fully recovered from the shock just yet.

I am very proud of Weston and the fine progress he has made at school this year. A far cry from last year's difficulties and validation to me of the importance of providing the proper supports, and plenty of them, to a child who struggles with behavioral issues.

I am proud of the school, for working so closely with me to design and redesign these important tools.

And finally, I am proud of myself for fiercely protecting my son's precious self esteem, for striving always to assist others in seeing the value that is sometimes hidden within Weston.

Way to go Weston!!!!!!!