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.




Tuesday, August 28, 2012

The Swim Coach and the Silent Waltz

"Hello, er yes," I said rather nervously over the telephone, "I am looking for some swimming lessons for my son this summer."

"Okayyyy," said Beth, our local swim coach, who owns a pool and for many years has taught all of the neighborhood children how to swim.

I closed my eyes and waited for the next inevitable question.

"How old is your son?"

"Well, um, er..." I replied uncomfortably.

How do I do this? I wondered to myself. How do I explain why it took so long for me to consider swimming lessons for Nicholas? How do I explain about Nicholas? How do I tell her about his diagnosis?  But more importantly, will she be willing to teach him how to swim?

"He, um, has very low muscle tone and struggles with issues related to coordination." My pathetic attempt to try to educate her on some of Nick's challenges.

"Okayyyy, how old is he?" she asks again patiently.

"He's ten," I replied and felt my cheeks start to redden.

"No problem, she said, We will probably need to place him in a class with younger children."

Oh no, I thought to myself, she does not understand. Inside my head, I pictured a school of flopping, screaming children splashing her pool into a seething whirlpool of doom and destruction. I could see the slow moving Nicholas overcome by a monstrous wave of blackened pool water.

"Perhaps this isn't going to work," I answered, frustrated with my inability to explain what Nicholas needed.

"I have taught several children diagnosed with special needs to swim," she replied trying to assure me she had done this before.

I started to breathe a little easier.
How many children will be in the class?" I asked.

"About 6 or 7, but I would need to take a look at him in the water first."

More images of a floundering Nicholas gulping mouthfuls of chlorinated water.

"I don't know, I said, I am not sure this would be a suitable class for Nicholas."

Again my fear and inability to communicate.

"Once I see him in the water, I will have a better idea of what he needs." she reassured.

 "Oh," I said feeling a little better but still picturing Nicholas and Beth floating out of the pool on a giant kid-made tsunami.

"Why don't you just bring him by on Monday," she said. I could sense she was getting frustrated with me.

I hung up the phone and questioned the value of my degree in communications.

As the days passed, Nicholas looked forward to his first swimming lesson. We all tried to prepare him for the arrival of the big day.

"Nicholas, you're going to love swimming in the pool, it's so much fun," Weston said anxious to reassure his younger brother.

"I am?" Nicholas asked.

"You are!" Weston answered.

"Beth is soooo nice!" I told him enthusiastically.

"She is?" Nicholas asked.

"She is!" I answered.

Monday finally arrived and Nicholas awoke. He donned an old pair of Weston's "surfer dude" swim trunks, anxious to begin his new adventure.

We arrived at Beth's pool.

A mass of tiny, wet children was exiting the churning pool, laughing and shivering. What was I thinking? I thought to myself as they clamored around me and Nicholas looking for their towels. It wasn't long before each chilly child found their mother and headed home. The pool and surrounding area became quiet, the water stilled. A tanned, gray haired woman walked up to Nicholas and extended her hand.

"Are you ready Nicholas?" she asked.

"I am!" he replied enthusiastically.

She held his hand and led him to the edge of the pool.

They did not speak.

Within minutes, Beth had the sensory-sensitive Nicholas in the pool and smiling. I sat stunned on the side of the pool. I watched as these two strangers silently connected. They glided through the water in an effortless motion of trust and mutual respect.

Beth pulled Nicholas slowly around the pool. He let her gently guide his body.

"Ok, now try to put your legs behind you," she instructed softly, and the compliant Nicholas allowed his body to float. They swirled silently together through the water from one side of the pool to the other, softly, gently, quietly. Nicholas bonded easily with this patient woman. There were no dangerous waves or whirlpools. There was no fear or anxiousness, no difficulties communicating; submerged in the clear, tranquil water of the pool, they were dancing. As I watched their graceful movements together, I could almost hear the music.

This calm, silent scene was a sharp contrast to the loud, nervous noise inside my head.  My needless worry seemed silly to me now and I wondered if perhaps the word "disabled" was a more accurate description of me.  I was the one who was awkward and afraid. I was the one who had trouble trusting.

I was the one who couldn't dance.

It is my son, not me, who hears this inner music, a song that connects him silently and fluidly to others in this world who also vibrate to that beautiful sound.

As I watched my son dance to this silent music, I realized I have a lot to learn.


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Saturday, August 25, 2012

Man-cation

As summer winds down to its last few weeks, Weston has asked Pete for a little one-on-one vacation time together.

Hubby works in the commercial HVAC trade in Boston. As you would expect, summer is their busy time of year. As a result, Pete has worked many weekends, leaving both boys home alone with Mom for most of the day.

While Weston has been tolerant of his mother and her feminine energy, it is Dad's more masculine spirit that he craves. I encourage this male togetherness as I believe spending more time with Pete is helpful to Weston in enabling him to understand more about himself and his journey to become a man.

Throughout the summer Weston has also been very tolerant of Nicholas. He happily slows his life pace to accommodate the special needs of his younger brother. He does this without complaint.

But there are just some times, when a man has to do what a man has to do....and Weston needed some "Dad Time". He asked his Dad while we were having dinner one night.

"Dad, would it be OK if you and I spent some time together before summer is over?" he asked.

"No offense, Mom," he added.

Pete explained to Weston that it is very difficult for him right now to get some time off, but he would try.

Sure enough, Friday rolled around, and the chance came once again for some easy overtime. This was a difficult decision for Pete since as a family we could really use the extra bucks right now to help ease the cost of the attorney we are paying to help us with Nicholas's school issues. After much thought Pete decided,

"Weston needs me,"

So the two men are up in the mountains of New Hampshire hiking, biking and doing all things manly.

Weston at the Railroad Museum in Gorham, NH
For more information about Gorham and the museum, click here.
 
 
As for Nicholas, he is fluttering happily around the house with no big brother teasing him or taking his toys. His shoes are off, my closets are emptied and he is happy too.



Wednesday, August 22, 2012

New Nutropin Nuspin Nurse

OK, so I told you about the new injection pen we will now be using each night to give Nicholas his nightly GH (growth hormone) shot. Click here to read.


Well, the box containing his new monthly shots arrived unannounced at our front door....while we were on vacation! BTW, this medication needs to be refrigerated or it will become non usable.



I called our pharmacy to let them know the material had been shipped without our authorization, and since we were on vacation, it is now unusable. They quickly apologized and arranged for UPS  to pick up the box. In the meantime, we arranged to have a new shipment sent to us directly. The pharmacy called the Nutropin manufacturer to let them know we were receiving the new "stuff" and required training on how to use the new device.

The Nutropin folks called me immediately to let me know they were arranging for a Visiting Nurse to come to our house. So far, so good.

The box arrived on schedule but we did not hear from any Visiting Nurse.
I called the folks at Nutropin. They assured me they would look into it.

Days passed and we were running low on our old stuff. The training was becoming critical.

I received a call from Nutropin folks on Thursday saying they were waiting for a nurse to "approve" the request. Waiting for an approval, I asked? What do I do in the meantime I asked? How long does it take to "approve" a request?

Friday came......no nurse?

Called Nutropin folks again.

They expect the nurse to call today.

Guess what?

You're right....no call, no nurse and we have used the last remaining medicine.

I now have a new device filled with a medication my son needs to grow properly and no instruction on how to use it.

Of course it is now the weekend and I cannot reach anyone at Nutropin.

I leave a message on our Case Manager's voicemail.

I leave a message on their General voicemail.

No response all weekend.

No response on Monday.

I call our Case Manager and ask to speak to her Manager.

I politely explain that I have been a customer of theirs for 10 years.

I explain the situation and request that the President of their organization be informed of what has happened to us. I explain that I do not want any other family of a child with PWS to go through this horrible charade. I told her that I would argue that providing a family with new medication and then no means to give it to their child is a form of cruel and unusual punishment.

The Manager calls me back and explains that a nurse has been contacted and once again we need to wait for them to confirm.

I ask this Manager what I am to do if this nurse is also unavailable. She says she does not know. I ask her very politely to have a back up plan in case this nurse is also unreachable.

Within 20 minutes, I receive a call from the Injection Nurse. She explains that this is the first time she has been contacted and will gladly be at our home tomorrow evening to provide instruction.

Wheeeeeew.

These are the type of "medication madness issues" that make our difficult life even more frustrating.

I am happy to report that the nurse did arrive last night.

She was great.

I am now officially "trained" on the Nutropin Nuspin device.
I must say this "next generation" device is very "high tech" twirling and whirling and delivering medication in a precise dose.

Nicholas was a trouper and very patient with Mom's clumsiness.

"That didn't hurt at all!" he said happily thanking the new nurse for helping us.

As for me....I think I need a good stiff drink (or two)!


p.s. The "expired" box of warm Nutropin is still on my step waiting for a UPS pick-up. It has been over a week. How long do you think it will take before I need to make another phone call?

Sunday, August 19, 2012

Boy, Opposite

In educating Weston, (diagnosed with ADHD), I have learned some interesting things.

In order for him to be successful in the learning environment, he needs everything to be opposite.

In fact, the school environment is probably the worst possible place to learn for a child diagnosed with this condition.

Let me explain.

Here are just a few basic ADHD principles:

1) Move don't Sit

In order for Weston to engage his brain, he needs to move! Physically moving his body helps to activate his brain.

In school, however, children must sit quietly in their seats, or face dire consequences.

2) Noise not Quiet

Noise transferred through head phones actually helps my child to listen. He needs noise....it helps him to concentrate better. Ed Hallowell, ADHD expert suggests that even adults diagnosed with ADD benefit from some kind of "white noise" to help them to focus.

In school, ipods are outlawed, those who use them face dire consequences.

3) Busy Hands not Empty Hands

If I want Weston to listen I must first put something in his hands!

Moving his hands opens his ears. Lego's are one of the most perfect "listening tools" I have  found to help my son to listen. As his hands engage so too does his mind and he will talk up a storm if his hands are busy.

In school, teachers insist that all items are removed from a students desk or they may face dire consequences.

4) Male not Female

Weston responds better to male energy. Male teachers hold the secret key to motivating Weston. He prefers the straight forward approach, the thinking vs feeling, the "do or die" philosophy and well defined walls that men typically use in providing structure in their classes.

In our school district, male teachers are an overwhelming minority.

5) Outside not Inside

If I want to calm Weston, I put him outside. Soothing talk can sometimes make him more upset.....a good long ride on his bike is sometimes the best medicine.

In school, classes are rarely if ever held outside.

6) Under Stimulation not Over stimulation

Loud, noisy environments are physically painful to Weston. He feels it physically and will often react abruptly and inappropriately in these environments. Wouldn't you, if your body hurt?

In school, there are noisy classrooms, cafeterias, auditoriums, recess.....those who have trouble here often face dire consequences.

Can you see how the school environment can spell trouble for a child diagnosed with ADHD?

Can you see how one's self esteem can start to deteriorate after so many dire consequences are placed upon children who are just trying to survive in an environment that is not conducive to their style of learning?

I have held many IEP meetings with many teachers to discuss these exact issues. I have found that it is not easy to change a culture. Most teachers believe that children diagnosed with ADHD choose to be difficult; that these children are willful and if they only tried harder, they would be successful. They resent changing rules to accommodate children who just want to be difficult.

As a mother, I can tell you without a doubt that my son Weston's brain works differently. I know this is true because when I employ different strategies, they work! I have found many valuable resources by many recognized experts who support this important philosophy, Russell Barkley and Ed Hallowell are two of my favorite. I would encourage all teachers and parents of children diagnosed with ADHD to read them.

If Weston is to be successful in school and life, we must recognize this fact and teach/raise him in a manner that understands and more importantly respects his academic, listening and learning differences.



Wednesday, August 15, 2012

Listening to All the Things You Can't Hear




Don't underestimate the value of doing nothing,
of just going along,
listening to all the things you can't hear
and not bothering.
A.A. Milne




Monday, August 13, 2012

Early to Bed, Early to Rise...

Early to bed, Early to rise,
Makes a man,
healthy, wealthy and wise.
-Ben Franklin


Many children diagnosed with Prader Willi Syndrome seem to instinctively follow Ben Franklin's sound advice, or at least this is true for my son, Nicholas.


No matter what I do to try to engage my young son, by 7 pm he is tired and ready for bed. Of course, with this early to bed time comes the opposing early to rise time.

While the rest of the house is sound asleep in their beds, Nicholas is wide awake and enjoying his morning quiet time. He watches TV, plays with his toys and explores our dark, quiet home. Often, I have awoken to find all of the contents of our front closet scattered across the hallway floor or my favorite antique lamp sitting disassembled on the dining room table.

More seriously however, while Nicholas does get 10 hours of ample sleep time, the early rising creates a problem for a child who is designed to eat.

Parents of children diagnosed with PWS must be vigilant in their efforts to ensure that all food is secure before bedtime thus preventing the life threatening food seeking that can occur during this early wakening period.

Refrigerators and cabinets must be locked. All food must be removed from counter tops and cabinets. Given this uninterrupted alone time, children diagnosed with PWS can become very clever in their ability to disable locks and unscrew kitchen cabinets, driven mercilessly by their unquenchable desire to eat.

It is not unusual for children diagnosed with PWS to raid basement freezers, eating things like frozen meats, pies, pastries etc. Household baking items like powdered sugars and syrups stored in pantries are other potential food sources for our always hungry children.

In severe cases, some children diagnosed with PWS will elope in an effort to find more available sources of food. Many PWS parents resort to installing home alarm systems that will warn them if their child tries to escape the house in search of food.

There is hope, however.

Researchers have uncovered a gene called Magel2 which is highly expressed in the hypothalamus of the brain. Recent studies of this gene and its expression, seem to suggest that it plays a role in circadian rhythms (early rising), growth, metabolism, endocrine function and fertility.

http://www.jcircadianrhythms.com/content/9/1/12

http://hmg.oxfordjournals.org/content/16/22/2713.full

It is the hope of all parents of children diagnosed with PWS that this research will help us to better understand and more importantly "treat" these unusual and life threatening features common to so many of our children.

Luckily for us, Pete also rises early for work each morning. He feeds Nicholas his breakfast immediately which seems to help alleviate Nick's early morning food-seeking temptation for now. We also ensure that all food is placed away in our pantry with the door closed and locked before we head to bed. Even Weston has become super vigilant in his ability to remember to close and lock the door.

If and when Nick's food seeking escalates, we are ready to install an alarm or redesign our kitchen to accommodate the unusual needs of our hungry child.


As Ben Franklin also said....

By failing to prepare, you are preparing to fail.

Our family has adopted its own PWS motto...

We hope for the best but like our favorite founding father, we are aways prepared to find solutions for the worst!


Tuesday, August 7, 2012

The Academic Powers of The Throne in ADHD

I have written many times about my son, Weston and his penchant for movement.

He is like a hemi-powered race engine stuck in overdrive barreling down the freeway at 100 mph. It is difficult for him to put on his brakes. Things like school, mealtimes or long leisurely drives are difficult for Weston since his movement is inhibited.

The only other thing move painful to Weston than sitting still is unfortunately, reading.

An assigned book report from the school is like a death sentence to my hyperactive child. Simultaneously sitting, thinking and comprehending over extended periods of time is like a lifetime of hard labor.

But there is one place in our house where the pain of reading is magically diminished.

Where this same Word Worried Wiggler is suddenly transformed into a Word Wrangling Wonderboy.

No, it is not his bed room, the family room or even my office.

It is.......unbelievably..........here:


What is it about the mystical powers of the bathroom and boys?

Like his brother, Nicholas also enjoys leisurely lavatory lounges. (Click here if you would like to read Nick's toilet room post)

I must admit, even I have sought the refuge of the only "locked and quiet room" in our house.

But for my wiggly son, Weston, the bathroom setting holds the illusive key to his perfect learning environment.

He starts by gathering a collection of books, mostly nonfiction encyclopedia-type books jammed with hard facts about things like tornadoes, thunderstorms, Titanic or military and sports vehicles.

He heads into the bathroom and locks the door signaling that his study session has begun.

He tips over my laundry basket creating a flat surface, perfect for reading and memorizing photographs.

He sits on his study seat for what seems like hours as he leisurely flips through the glossy pages of text, memorizing critical data that is pertinent to the life of a 13-year-old boy.

As he exits his magical place of learning, he'll say things like,

"Hey Mom, did you know that the Titanic was 882 feet long?"

"No, Weston, I didn't" I respond thankful just to see my son in the very unusual position of holding a book to his nose.

I do not know what it is about the quiet confines of our powder room that enables my son to relax and learn?

Is it the small comfortable space?

The lighting?

My fluffy blue hand towels?

As a Clueless Mother I am once again at a loss to understand my quirky son.

I am hesitant to ask Weston about his Remedial Reading Respite least he become self conscious about the only place in the world he feels comfortable learning.

Do you think the teachers at Weston's school would think I am insane if I suggest we add to his IEP that he perform all of his studies, tests and reading assignments in this environment?

Monday, August 6, 2012

Who am I?

One of the things I love most about summer vacation is the opportunity it brings me to watch my children and their creative play antics.

As I mentioned in previous posts, Weston loves to pretend play. In the past, he has experimented with becoming, a juggernaut, a nonconformist and the scary guy from Scream.

Nicholas has not always been a willing participant. This summer, however, he has whole-heartedly embraced his role as the awestruck little brother and has donned the goofy gadgetry of make-believe madness.


The dynamic duo dressed as detectives and holding cameras


More juggernauts holding Nerf guns
(Nicholas is wearing Weston's old ski helmet)

AND FINALLY


I wanna be a rockstar
(Nicholas playing a set of Mom's plastic straws)

Saturday, August 4, 2012

A Wiggly Super Sense of Smell


When he was 5 years old, my son Weston was diagnosed with ADHD.


In an effort to describe hyperactivity to a kindergartner, we nicknamed it, "The Wiggles". Weston related immediately to the term and felt relieved, I think, to find a positive word that helped him to describe how he was feeling.

Often, he will tell me,

"Mom, I just can't help it, today I feel so Wiggly."

Children diagnosed with ADHD are constantly reprimanded. Their high-energy, free-wheeling spirit is continually subdued in our rule-governed society. Because of this, children diagnosed with ADHD often see themselves and their condition as being inherently "bad'.

In an effort to help Weston create a more balanced and positive outlook of himself, we try to emphasize things that are good about having The Wiggles.

One of them, without a doubt, is Weston's heightened sense of smell. He is the first to smell someone, smoking, eating, farting (!) or wearing perfume. I am quite convinced that the smoke detectors in our house are completely unnecessary thanks to the overwhelmingly-sensitive olfactory senses of my son, Weston.

The worst school year Weston ever had was with a teacher who wore too much perfume, drank coffee and taught in a classroom directly across from the cafeteria.

Ironically, Dr Oliver Sachs, Neurologist and author of the book, Awakenings, observed that patients who were taking amphetamines (adhd medications) also exhibited this overwhelming increase in their sense of smell.

Temple Grandin, doctor, professor and best selling author who just happens to be diagnosed with autism, says most of us as have a type of "inattentional blindness". We are born with a type of brain filter that prevents the unnecessary flow of "the swirling mass of tiny details."

This brain filter enables us to instinctively block out noise, sights, sounds or smells that are distracting to us. While this filter enables us to work without interruption, it can also make us blind sometimes to the absurdly obvious.


Like Temple, my son Weston, also suffers from these heightened senses and an accompanying lack of any type of brain filter. He sees, hears, tastes, touches and smells better than the rest of us. So much so, that it can sometimes be physically painful for him.

If you are interested in learning more about Temple Grandin and her journey to better understand herself and her strengths as they relate to her diagnosis please watch this movie.

As for Weston, we encourage him to see his sensitive sniffer as a gift, an ability to discover what the rest of us cannot.