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.




Thursday, February 28, 2013

The Interview

Weston is heading off to high school in September.

Holy shit.

Recently, he visited the local technical high school where he decided immediately, that this was the place for him. He was energized by observing unique classes held in work shops and auto garages. But it was as if his prayers were answered when he noticed students encouraged to get their hands dirty.

There were swarming numbers of new people, friendly faces unaware of Weston's social and academic difficulties. He was surrounded by teenagers, who, like him, struggle to feel accepted.

He has told me many times that he is ready to quit public school and enter the working world. Yes, this new school option seems like a good fit for Weston.

On Friday morning, representatives from this technical institute will be visiting the middle school to interview potential applicants. Weston will be one of them.

He came home excited about his first ever interview.

He calmly explained to his clueless mother that the first thing we needed to do was purchase a new shirt, slacks, belt and tie.

I wondered who this child was standing beside me?

Over dinner, Pete and I decide to create a mock interview to help Weston prepare for his big day.

Pete began the rehearsal:

"So, Weston, tell me a little bit about yourself"

Weston stares blankly at his father and asks,

"Ahhhh, what do you mean?"

Not exactly a good first start for our aspiring young technician.

"You know, what is it that makes you who you are?'

"I don't understand?" he says, his voice sounding panicked and confused.

Pete is frustrated and searches for the correct wording.

"Describe yourself," he blurts, using the minimalist language Weston prefers.

"Ohhh!" Weston says, "Now I understand. Ummmmm, well, let's see, I don't know."

There is a long pause.

In my mind I picture the big burly interviewer laughing to himself as he whispers,

"Not a chance, kid!"

There must be something you like to do?" Pete asks, trying to regain a patient tone.

"I know, I like to play video games!" Weston answers enthusiastically.

Pete and I both sink in our chairs.

"Yes, Weston that is one of the things you like to do. But it is not what this school probably wants to hear," says Pete.

"Why not?" asks Weston.

Pete shakes his head and struggles to explain this one to Weston.

"Well, this school wants to hear about the things you like to do outside in the fresh air. They want to know what you do with other children."

Once again, the vision of the stern interviewer comes leaping to my mind as I picture him pounding Weston's application with a large red REJECTED stamp.

"I don't understand," said Weston. His compulsive nature is now beginning to thwart his attempt to identify any of his other interests.

"Weston you enjoy riding your bike, going camping, taking hikes and playing basketball. You also participated in track last year. There are lots of things you like to do." I said.

"I know Mom, but I am afraid I am going to blurt out video games by mistake,"

"Forget about it Weston," Pete says, "You need to just relax and be yourself."

Weston is now starting to visibly sweat. He takes a deep breath.

"Let's try again, I say calmly, "Weston, what are your strengths?"

Weston looks at me as if I am speaking a different language.

"I don't understand?" he says crossing his arms and slumping into his chair.

Silently, I begin to pray and visualize the mighty interviewer transforming into the gentle Mother Theresa.

"What is good about Weston?" I ask.

"Ohh, I see now, well" he says, "I have a big heart."

Now we're rolling I think to myself.

"What is something difficult that you have mastered?" asked Pete.

"That's easy," says the honorable Weston, "I take care of my brother."

He looks at us and smiles as he sits up straight in his chair.

"Can I tell them about Nick?" Weston asks eagerly.

"Yes, of course," says Pete, "It is an important part of who you are."

As I watch Weston's expression, I notice that for the first time during our practice interview, he is relaxed and comfortable. It is as if Nick's calm demeanor has transformed Weston's restless energy into a sudden burst of confidence and charm.

I think back to Nick's many hospital visits. The dreaded IV sticks that morphed the mild mannered boy into a screaming banshee. Often it was Weston who single-handedly possessed the soothing magic to quiet his suffering sibling.

He has weathered ruthless attacks from callous teenagers who have called his brother a faggot and a retard. And although these ignorant remarks have wounded his heart deeply, as a protective older brother to a sibling diagnosed with special needs, he has found his courage and developed a deep and caring character.

It is clear to me that caring for Nicholas, has brought out the very best in Weston.

"Ask me about Nicholas," Weston says smiling confidently.

"How do you help your brother?" Pete asks.

Weston sits up taller in his chair and explains intelligently,

"Well, I help my brother when he visits the hospital. He has been diagnosed with Prader Willi Syndrome and suffers from some night time seizure activity. He needs to have an EEG performed once a year. He doesn't like it because there are a lot of wires that need to be stuck to his head. To clam him down, I hold his hand and sing to him."

 I feel hot tears begin to swell in my eyes. Pete has abruptly left the table and is headed into another room but not before I see him wipe his eyes.

"OK, Weston, great job, I think that is enough practice for now." I say quietly.

"Awww," Weston says disappointed that the interview has now come to a close. He jumps up from the table, grabs his Ipod and heads upstairs dancing and singing along to his favorite tune. The fear and nervousness gone, the happy cyclone of energy has returned to his original state.

I try to collect myself in the kitchen and realize that although our mini interview did not produce stellar results, it has enabled me to better understand my son.

He is not phony or pretentious.
He has no desire to deceive others.

He is straight-forward and honest, with a pure heart and a true spirit.

And if you want to know the real Weston, just ask him about things he cares about.

Our mock interview has done little to help Weston. But for me, the lesson is priceless. If I really want to help my son prepare for his interview, then I need to allow him simply to be himself.

I have a feeling he will have no trouble explaining to the phantom interviewer, exactly what (and who) makes him tick.

Please visit me today at:

Tuesday, February 26, 2013

Provigil, Parents and PWS

Everyday, I thank God for the Internet.

This amazing invention has enabled me to connect with other parents of children diagnosed with Prader Willi Syndrome. These parents live all over the world.

I can tell you, without a doubt, that I have learned more from these parents than any medical professional or specialist.

These parents share ideas, tips and treatment options and thanks to them, the health of my son has improved.

My latest discovery from these true experts is a medication called Provigil. Thank you Cyndi O!

Cyndi explained to me that Dr. Jennifer Miller, an Endocrinologist and PWS expert located at the University of Florida, had used Provigil successfully in patients diagnosed with PWS to prevent daytime sleepiness and improve concentration. Dr Miller had presented her findings in papers and PWS conferences.

Cyndi lives up north but makes the journey to Florida to see Dr Miller for her proactive approach in treating this syndrome.

Provigil is a stimulant medication, much like Ritalin or Adderall. It is used most specifically to treat narcolepsy. But Dr Miller found that this medication helped improve focus and concentration in children diagnosed with PWS. It prevented daytime sleepiness and also seemed to normalize disrupted sleep patterns. She saw few, if any, side effects. She also noticed a mood stabilizing effect in many of her patients.

Many children diagnosed with PWS will fall asleep early in the evening. They also wake very early in the morning and often have trouble sleeping soundly throughout the night. This lack of sound sleep can exacerbate behavioral issues. The early rising creates dangerous opportunities for children who food-seek or for those who elope.

Thanks to Cyndi, I met with our pediatrician to discuss this treatment option. We had been talking about starting Nicholas on a stimulant to see if it would help improve his focus during the school day. Since Weston and dear old Dad suffer from symptoms of ADD, it seemed that this might be a concern for Nicholas as well.

But our pediatrician was not familiar with this medication and felt uncomfortable prescribing it.

I emailed Dr. Miller and asked if she would provide me and Dr B with her thoughts on the use of this medication.

God Bless Dr. Miller.

She responded to me via email with some of her observations. This woman is a saint. She is a wonderful physician, researcher and advocate for all patients with PWS! Thank you Dr Miller.

I also emailed Nick's Children's Hospital team to seek their respected opinions as well. Both Dr Stafford and Dr Takeoka were on board and agreed it was a good treatment option for Nick. Thank you Dr Stafford and Dr Takeoka.

Still our pediatrician was uncomfortable and requested I speak with Dr Takeoka since this medication is most typically used to treat narcolepsy.

Thankfully, we were due for Nick's EEG and as I posted earlier, we saw the return of some sub clinical spiking on his EEG. This spiking was specifically in the frontal region of the brain which ironically controls attention.

So, it seemed a "no brainer" (pardon the pun) to start Nicholas on Provigil.

We started at 100 mg and after 2 weeks increased to 200 mgs.

So far,  here is what we notice.

Nicholas no longer dozes off during the day, not even in the car!

His focus and concentration is much improved. He is calm and alert with less behavioral outbursts.

He stays up much later at night. Typically, he would fall asleep by 7 pm every night. He has been staying up later.

He seems to sleep sounder with less frequent wakings.

He sleeps later and is no longer getting up at 2 or 3 am.

I have however, noticed more skin picking.

I believe it is because he is now so focused. I have been vigilant with the band aids. We will see how he does when he is distracted by school.

I would be happy to answer any questions, for those interested.

I am thankful to belong to community that shares such helpful information.

Thank you again dear Cyndi.

Tuesday, February 19, 2013

Jammin' to the Beat of a Different Drummer

My two children could not be more different.

Weston is powered by high octane rocket fuel. He runs, jumps, slides and whizzes through life at the speed of light. He acts first and thinks later. His favorite activity is making noise and lots of it.

Nicholas, on the other hand, is slow moving and gentle. He likes to play quietly in the living room. He has a big heart and enjoys playing the role of a caretaker.

But despite these differences, Nicholas longs to be like his older brother.

He has worn scary costumes on Halloween.



He has willingly participated in Weston's "War Game" antics.


He has even played the drums like a rock star just to please his older brother.



 But most recently, Nicholas has begun to emulate Weston's love of music.

A few years ago, we bought Weston an Ipod for Christmas. What we discovered, quite by accident, was that this device was actually a pretty darn good calming tool for the hyperactive Weston. We have used it to help him to focus during dinner, difficult homework assignments and visits to local restaurants. He uses it in noisy environments to drown out offensive sounds. It has been like a life saver to Weston.



As the ever-adoring little brother, Nicholas has decided, once again, to emulate his older brother. And although the calm Nicholas does not require any assistance in cooling his jets, I found him yesterday, wearing this...


He placed a toy portable CD player around his neck. He attached an errant pair of Weston's headphones into the device and voila.......a makeshift Ipod!

And, while big brother Weston roamed around the house dancing and singing at the top of his lungs to Twisted Sister...

"We're not going to take it! No! We're not gonna to take it! We're not going to take it anymore.....!"

 His adoring little brother followed closely behind singing softly to the soothing sounds of Peter, Paul and Mary...

"Puff, the Magic Dragon, lived by the sea, and frolicked in the autumn mist in a land called Honah Lee! Ooh..."

Sunday, February 17, 2013

Snow Daze

There is nothing better than playing in the snow after a blizzard.

During last week's blizzard, the air temperature was very cold. This colder temperature created very small snow flakes. Of course, since it was a blizzard, the flakes may have been tiny, but there were lots and lots of them. When this happens, as the snow piles up, it becomes very powdery. It is like jumping into sugar. The snow is resistent to packing. Good snow-ball-making is almost impossible and pulling a sled is like moving a car that is stuck in the mud.

Pete exhibits this powdered sugar phenomena, as he tries to pull Nicholas on his sled through the snow.
 
The sled refuses to budge


But Pete trudges on like a trooper...


 Around the corner


A closer look.....


"Knock yourself out Dad, I'll just roll in the snow," says Weston



"Please Weston, a little help?" pleads Dad.


"Whaddya say Weston, wanna help?"

 
 
"Dad, I don't think this is gonna work! Ooops"
 
 
 
 
"Let's try again."
 
 
 
"Dad, why don't you try pushing from the back?"
 
 

No luck

 
 
"I know...let's get Muffy!"
 


"We're doing it!"

 
 
"We're done!"

 
 
Muffy gets on the sled to show the gang how it's done.
 
 


Happy Nick


Happy Weston


Happy Muffy


Tired Dad

Thursday, February 14, 2013

A Day of Sadness

I am sad to report that the body of M's father has been found. Police located it in the wooded area behind his home this morning.

The last few days have been very stressful for this local family. They will now have some closure and can begin their process to heal. Although, I am not sure how a young boy ever learns to live without his father? Our tiny town has wrapped their arms around this grieving mother and her two sons.

Weston is very sad for his friend.

What should be a day of love, has become a day of sadness for all.

We will do our best to support this family. Please continue to pray for them.

Thank you all for your support.

In honor of M's father Bo:
The Traveler
He has put on invisibility.
Dear Lord, I cannot see—
But this I know, although the road ascends
And passes from my sight,
That there will be no night;
That You will take him gently by the hand
And lead him on
Along the road of life that never ends,
And he will find it is not death but dawn.
I do not doubt that You are there as here,
And You will hold him dear.

Our life did not begin with birth,
It is not of the earth;
And this that we call death, it is no more
Than the opening and closing of a door—
And in Your house how many rooms must be
Beyond this one where we rest momently.

Dear Lord, I thank You for
the faith that frees,
The love that knows it cannot lose its own;
The love that, looking through
the shadows, see
That You and he and I are ever one!
- James Dillet Freeman
 
 

Tuesday, February 12, 2013

Missing

Weston and M have been friends since the third grade. They are very similar in their learning styles and as a result often attend many of the same classes together. They have worked very hard to overcome their social difficulties and learn how to be good friends.

M's father was recently in a severe car crash. He sustained some serious injuries like a broken sternum, broken ribs and internal bleeding. He has been recovering from these injuries at home.

Last Thursday, the day before the big storm, M's mother returned home from doing some errands only to find her husband missing.

As you all know, on Friday a severe winter storm hit our area and deposited over 2 feet of snow. Local police received a cell phone signal from the large wooded area behind M's house. This is a heavily wooded area consisting of hiking trails, ponds, marshes and heavy thicket.

A missing person's report has been filed with the state. Local and state authorities have been searching the wooded area behind M's home but are inhibited by the deep snow and slippery conditions.

Weston is very concerned about his friend and family. We are all very worried. We have contacted M's Mom and will continue to offer them friendship and support. As a family, our thoughts can think of little else than the safe return of M's father to his family.

Please say a prayer for this family.

Saturday, February 9, 2013

Don't Let the Name Fool Ya

Winter storm Nemo proved he has a few teeth. He packed a powerful punch to the Boston area. There is a travel ban still in effect for today, as the state does its best to clear the slippery roads.

The storm proved to be one of the top five snow makers in Boston history, but still fell short of the Blizzard of '78 benchmark.

It is 1 pm and still snowing fairly heavily in our area. We have about 2 feet of snow.

We did not need to bring Nicholas to Children's at the height of the storm this time. Phew.

Here are some photos of the surrounding area.

Winthrop, one of Boston's coastal communities
Cool photo huh?
 (photo from CBS Boston)
 
Back Bay Boston (photo WCVB)
 
 
Fellsway Split (photo WCVB)
 
And from the Peter's household
 
 
Back porch deck - and still snowing
 
 
Pete's van 
 
 
Nicholas on the driveway
 
 
Our neighbor's cars buried in snow
 
 
View of the street
 
 
Mechanical difficulties -
Thankfully fixed with help from Weston
 
 
A handy guy to have around
 
 
This is my lilac bush
Yes, even in winter, hubby is still Plant Killer Pete !
 
 
 
Anyone feel like grabbing a shovel?
Stay warm, dear readers and have a nice weekend.



Friday, February 8, 2013

Here we go...

The Governor of Massachusetts canceled school and ordered non emergency vehicles off the road by 12 noon today. He has issued a ban on all travel by 4 pm.

Pete made it home safely from work.

The snow has started to fall, the wind is roaring and we are no where near the height of the storm.

 

I am happy to report that Nick's pediatrician prescribed us a "parachute" prescription of antibiotics to protect Nicholas during the storm, to use in case his swollen gland issue worsens. Phew...! Thank goodness because travel to Boston during this blizzard would be impossible and most likely life-threatening.

Total expected accumulation for our area has increased to 24-30" of snow. Wind gusts are expected at up to 65 mph. Hurricane force winds are expected off shore.

We have all our emergency supplies, in case we lose power. We are hunkered down for the evening.

Eager to play in some snow, at last, the boys tried to do a little sledding. But the blowing wind and snow made it too difficult. They quickly abandoned their plans.

 
Can you guess what I am baking?


Here's a hint!
More photos tomorrow