Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 13, diagnosed with Prader-Willi Syndrome and Weston 16, 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.




Sunday, May 22, 2016

Release the Kraken

Sometimes I forget who I am.

I become so engrossed in playing the game of special needs parent with the school

I forget who I am playing.

It is at these times I am thankful
for the unique individuals in my life
who hold up a mirror,
bonk me on the head
and remind me
of who I am


And what I must do

Despite the success of the PWS presentation we gave to Nick's classmates this year, he has struggled in this public school setting. He is all alone in a substantially separate program with no adequate peer grouping. As I feared from the start, this placement has produced an increase in anxiety and now depression. His behavior at school has escalated and he has developed urticaria, a severe rash of unknown origin causing three rush trips to Children's Hospital with the potential for anaphylactic shock.


Shortly after this diagnosis, he told me that a student showed him his private parts at school. He identified the time, the place and the specific hand gesture. He said he could identify the student.

I contacted the school immediately. 

It took them several months to investigate my report. 

They responded back in writing, telling me that the results of their interview with Nicholas were inconclusive. They believed the incident never occurred.

WTF?

Nicholas does not lie. In fact, he is honest to a fault.

I reported what I believe to be sexual harassment and the school's lack of response to it, to our local police department, who said they would investigate.

I have not heard back from them.

My blood has begun to boil.

So, thank you Dr George,

who is quick to remind me:

YOU'RE A PIRATE...

IT'S TIME TO RELEASE THE KRAKEN

Warner Brothers Pictures



Sunday, May 1, 2016

A Tale of Two Cities

If you're a long time reader of our blog, perhaps you remember the winter of 2014-15
the snowiest winter on record for the Boston area?


Of course, with record snowfall, comes record ice dams  Like many others, we experienced severe icing that caused water damage to our home.

After several negotiations with our tight-fisted insurance company, we received enough funds to de-mold the attic, gut-out the living room, add hardwood flooring, repaint the kitchen and repair our deck.

Unfortunately, my sensory sensitive children were unable to withstand the sights, sounds and smell of construction repair, so we decided to uproot the family and head outta dodge.

"Kinfolk said "Jed, move away from there!"
Said: "Coastal living is the place ya oughta be..!"
So, we loaded up the truck and we moved to New...buuurrrryyyy....
Port, that is....restaurants, coffee bars"


Anyway, I am happy to report that since it is indeed the year of the red, fire monkey, we turned lemons into lemonade and found a beautiful condo, for a great price, in the neighboring city of Newburyport, complements of our insurance company.

You may recall a post I wrote a few years back about the beauty of this historic city.




Of course our new living arrangements had to have the necessary prerequisite for Nicholas.


It also has a few other lovely perks
Like this view from our bedroom window.


And this lovely park where Muffy enjoys walking every evening


Not far from the condo is one of our favorite beaches,


While it has been tricky living in two places at the same time,
we are trying to see this move as a type of mini vacation.
Some much needed quiet time,
a healthy respite, that, for our family,
symbolizes our desire
to put an end to the unhealthy state of constant crisis. 


So far, it has been exactly what we needed.



Thursday, April 21, 2016

The Year of the Red Fire Monkey

Sorry folks, I am behind my time in providing you with my yearly review.

I do, however, have a legitimate excuse.

It is the year of the red, fire monkey.

Expect the unexpected.

This, my friends, is a year of extremes.

Red is passion. Fire is intensity. Monkey is chaos.

Need I say more?

After the passiveness of last year's sheep energy, this year will feel like it is moving at light speed, hurling like a shooting star, burning brightly with much flame and intensity. You will find yourself unable to wrangle the sparks that are flying in so many different directions. With all this friction, you can expect a great deal of chaos. The funny thing about chaos however, is that with it, comes some much needed change.

sunshinee17@deviantart.com

The monkey is playful, silly and mischievous. He is the Yang, masculine energy, a strong and wily acrobat, who is confident in his precarious movements. He swings through the trees with unusual ease and although he takes great risk he is in-sync with the universe and always ends up unscathed by his boldness.

It is a year to take a risk, to be bold, roll the dice, and make that first move. You must trust in the Universe. You will be pleasantly surprised. Although it may not be exactly what you expect, it could be even better. Whatever the outcome, with the red fire monkey it will be a fun and wild adventure.

Much like the monkey swinging through the trees, life seems to be moving forward with a dangerously out-of-control momentum. Relax, all will be well if you remember to have faith. There will be much movement and you may find yourself in a place you never expected. There will be laughter and frustration, great risk and reward. But most of all there will be passion and fireworks. The problem with intensity however, is that although it burns brightly, it is often short-lived.

Monkeys are social and communal creatures. They spend time as part of a close unit carefully grooming and attending to each others needs. But caution is needed in all relationships this year, as the monkey delights in provoking your anger. These skirmishes are typically intense but short-lived. Best to ignore childish antics and the monkey will quickly tire of the game.



So, enjoy this passionate year, my friends, be silly in the face of great hardship and you will be pleasantly surprised where you end up.



Wednesday, April 20, 2016

Through it All

We'll do it all
Everything
On our own

We don't need
anything
or anyone

If I lay here
If I just lay here
Would you lie with me and just forget the world?

I don't quite know
How to say
How I feel

Those three words
Are said too much
They're not enough

If I lay here
If I just lay here
Would you lie with me and just forget the world?

Forget what we're told
Before we get too old
Show me a garden that's bursting into life

Let's waste time
Chasing cars
Around our heads

I need your grace
To remind me
To find my own

If I lay here
If I just lay here
Would you lie with me and just forget the world?

Forget what we're told
Before we get too old
Show me a garden that's bursting into life

All that I am
All that I ever was
Is here in your perfect eyes, they're all I can see

I don't know where
Confused about how as well
Just know that these things will never change for us at all

If I lay here
If I just lay here
Will you lie with me and just forget the world?
Chasing Cars - Snow Patrol

Copley Square Boston
John Hancock Building

Friday, April 15, 2016

The Rock of Sisyphus


This is Sisyphus, perhaps you've heard of him?
He is a king from Greek Mythology,
whose story is often used as a metaphor,
 to describe acts of great futility.

He was a crafty and persuasive ruler who cheated death twice, exposed Zeus's indiscretion and refused to follow the rules. His punishment for angering the Gods was to push a large boulder to the top of a high mountain. The heavy stone would then plummet back down to earth. Sisyphus' task was to push that stone back up the mountain again and again for all eternity.

As a special needs parent, I am no stranger to the word futility.

I can identify with Sisyphus.

So much of my life feels chaotic and futile, there is an intensity of effort and heaviness of responsibility that feels a lot like pushing a large boulder up a very steep hill.

But there is something very powerful about the story of Sisyphus.

In fact, a French philosopher named Albert Camus had a theory about his struggle. In his book, the Myth of Sisyphus, he proposes that Sisyphus is not frustrated by his predicament; but is instead a happy man.

Happy, you ask? How can this be?

Well, according to Camus, Sisyphus is happy because he is not a prisoner of hope. When there is hope, there is expectation. When there is expectation, there is disappointment when things do not turn out as anticipated.

Sisyphus, you see, is free from hope or expectation, He knows his fate and accepts it. However, futile, absurd or chaotic his life, by accepting his situation, he is free to enjoy it.

To Camus, Sisyphus teaches us to embrace pain, struggle, even futility.

He explains that when the stone falls back to earth, and Sisyphus turns again to retrieve it, this is his defining moment. He is happy because he knows his fate. He knows the rock will keep falling to the bottom. He is aware. He acknowledges that his life is futile, yet he rebels against it by continuing to stomp back down that mountain to push that stone up. The monotony of his absurd plight brings him peace. To Camus, it is Sisyphus' rebellion against the absurd that frees him, allowing him to live passionately in the moment. While it is the pain that allows him to feel alive, it is his rebellion against it that brings him peace.


By turning back around, he chooses to accept, he perseveres, he rebels, he wins.

In a way, Sisyphus cheats death for a third time.

When you think about life, what is it but a monotonous series of daily routines, pushing a stone up a hill and watching it fall back down again. Sisyphus is pushing his stone forever, he  is "living" for eternity.

The more he pushes the stone, the stronger and more resilient he becomes. With his face so close to the stone, he becomes intimate with its size, shape and smell, becoming strong and stone-like himself. He is a master. And with each journey back up and down, he learns.

He learns to embrace his pain, distracting him from thinking, forcing him to live in the moment, accepting his fate.....living.

Rebellion


Thursday, March 31, 2016

How to Save a Life



My son Weston is happy, delightful and....impulsive.

Diagnosed with Autism/Aspergers/ADHD, he is sensory-sensitive and hard-wired to move.

When he was a small boy, this high-energy and sensitivity presented itself as playfulness and a joy for life.

But Weston is now a teenager.

Gone are the days of playfulness and joy, replaced instead with a darkness of mood and an overwhelming sense of frustration. His light-hearted spirit trampled into submission by a world full of individuals who do not understand him. Combine his feeling of alienation with a high dose of hormones and split second impulsivity....

And you create the perfect recipe for teen suicide.

Last month, Weston reached his breaking point. He was depressed, angry, and frightened by his thoughts of killing himself. He asked to be hospitalized, describing a feeling of overwhelming helplessness, fueled by social anxiety at school and a lack of support and understanding from the adults in his life.

After several discussions with his physicians, countless med trials and two visits to the ER, we were directed by his psychiatrist to one of the best child psychiatry hospitals in the country, a small 12 bed hospital devoted to treating those in similar circumstances, misunderstood children ready to take their own lives.

It was here that Weston found respite.

He was surrounded and supported by a highly-trained staff. He mingled with similarly "labeled" boys and girls who could relate whole-heartedly to his feelings of alienation and isolation. For once in his life he found a place where he felt safe to be himself.

How sad is it, that the place my son felt most comfortable was in a psychiatric ward of a children's hospital?

He stayed there for almost 2 weeks.

Here, he received medication management and group therapy. He was given important tools to help guide him in negotiating his emotions. He made friends and became independent. He helped other children. He healed.

We, as parents, were given a "crash course" in the workings of the autistic mind and how to relate better to a child whose brain works differently. What we thought was a child with a lot of ADHD and a little bit of autism, was actually a child diagnosed with a lot of both. We were asked to look at Weston's disability as a strength, and understand how successful he can be if he is guided to follow his heart. While his inability to "filter" can cause terrible mood swings it can also create an innate sense of "awareness,"  an awareness that given the right environment could blossom into genius.

We were told his ability to communicate is sabotaged by a wiring in his brain that prohibits him from listening and responding appropriately, they explained the dysfunction to be a type of learning disability. They gave us probing techniques that would help to ease his frustration.

We were told we needed to be patient and to allow Weston the time he needs to mature. They explained it was no coincidence that the hospital was full of children during the school year and empty during summer months since most public schools lack staff who understand the autism profile and lack the appropriate training to support these individuals.

We were also pleasantly surprised to hear from many of the nurses how respectful and polite our son behaved. Every day we visited, we received a new compliment from a new staff member. Each told us they did not want him to leave.

The irony of this did not escape me.

Weston's hospitalization was the best/worst days of our lives, a very sobering and informative experience.

We witnessed first-hand the staggering numbers of struggling teens stuffed like cattle into unaccommodating emergency rooms. We were surprised to see these youths treated like prisoners. These were children with sensitive souls, in desperate need of simple, compassionate psychiatric care, but instead they were victimized even further as they waited in ER departments woefully unprepared to manage their care.

They waited, much like Weston, under blinding florescent lights, on rollaway beds in hallways, or strapped tightly to gurneys as muscle-bound security personnel ensured their safety and submission.

Like many others, Weston was admitted to a bed in the hallway

I rolled him by a window in a hall lobby
Here he slept, while I spent the night sleeping in the two chairs beside him

Did you know that many ER departments do not have a psychiatrist on staff. This one was no different..

Did you know that many ER nurses are not trained in psychiatric medication management and the need for properly-timed doses?

Our ER nurse was about to give Weston all of his medications, at the same time. If I had not checked what meds she was giving him, he would have OD'ed.

Did you know that hospital pharmacies do not have enough medication in stock (or a service) to provide all patients with the medications they are prescribed, and therefore do not give some patients like Weston all their required medications?

Do you know what happens to children (or adults for that matter) who suddenly stop taking their prescribed psychiatric medications?

There was a young girl in the room down the hall who screamed bloody murder for over 2 hours.

"Mom, why don't they help her?" Weston asked.

I did not know how to answer him.

Eventually, the screaming stopped when her mother was escorted out of the building by armed security guards. She had become angry and shouted at the staff, begging for someone to provide her daughter with the appropriate care.

But finding an open bed in a psychiatric hospital is difficult.....if not impossible.

Ask any hospital social worker how often they are able to make an immediate placement? Never mind their ability to find an insurance company willing to pay for it?

Proper placement can take weeks, with many children waiting in hallways of overfilled and overwhelmed emergency rooms.

As a family we were fortunate.

The suffering we experienced was nothing compared to what we witnessed in several hospital settings.

I am thankful to Weston's psychiatrist for helping us to navigate through a broken system. I do not know how you thank someone for saving your child's life. I do not think it is possible but I will be forever grateful to this kind man for his compassion and direction.

To my son Weston, I am grateful for our journey together. We weathered a tempestuous sea. We found both help and healing and became enlightened by our exposure to a suffering that was much greater than our own.


    Open Your Eyes
    All this feels strange and untrue
    And I won't waste a minute without you
    My bones ache, my skin feels cold
    And I'm getting so tired and so old
    The anger swells in my guts
    And I won't feel these slices and cuts
    I want so much to open your eyes
    'Cos I need you to look into mine
    Tell me that you'll open your eyes
    Tell me that you'll open your eyes
    Tell me that you'll open your eyes
    Tell me that you'll open your eyes
    Get up, get out, get away from these liars
    'Cos they don't get your soul or your fire
    Take my hand, knot your fingers through mine
    And we'll walk from this dark room for the last time
    Every minute from this minute now
    We can do what we like anywhere
    I want so much to open your eyes
    'Cos I need you to look into mine

Wednesday, March 9, 2016

Hupomone

I have learned a new word.

It is pronounced  (Hoop-om-on-ay)

Hupomone is a lexicon, a unique word that you will not find in a dictionary. It was used specifically in the Greek Bible to describe a heightened level of perseverance.

It is a word that describes the ability to endure. Not a "wait for it to pass" type of endurance, but an endurance that implies action, an ability to weather overwhelming circumstances with a sense of present participation, unfaltering perseverance and a patient faith in the knowledge that there is something to learn from pain, something that brings us in touch with our spirit, our soul, our ability to love and feel compassion for others. Hupomone is an ability to keep on going no matter what, to carry on with a sense of deep faith despite continuous and overwhelming hardship.

This word is not only appropriate and relevant to me at this particular time but it is also very spiritually chilling in a deeply meaningful and personal way.

I discovered it by accident.

It has been a difficult time for our family, even by our typical chaotic standards.

Pete broke his wrist.

Weston was hospitalized for medication management

And last week Nick spent many nights in Children's hospital in an effort to diagnose the route cause of some frightening health issues, including an outbreak of severe hives, extreme fatigue, lack of stamina and overwhelming anxiety.

I am not ashamed to admit that my typical feisty spirit unraveled.

I sat next to Nick's hospital bed and wept.

Frustration, helplessness and pain overwhelmed my spirit.

I felt hopeless and lost.


Asking God once again........why?

In an effort to hide my pain from Nicholas, I buried my face in my iPhone, typing a few random letters into my google app, anything to hide my tears and distract myself from the feeling of paralyzing fear.

What appeared on the screen was the word Hupomone.

A coincidence?

Perhaps.

But to me it was strength.

A single word that lifted me out of a very dark place.

And I was humbled.



Wednesday, January 20, 2016

Wednesday, December 30, 2015

Nieces and New Years

I have two nieces who are young and smart and beautiful.


They are very hip
 
and very connected to the internet.....and to the world.
 
I feel very fortunate to have them in my life.
 
They keep me feeling young, inspired and in-touch with humanity.
 
I believe our younger generation is very awake and aware of the world around them.
 
They seem to understand already
 
that no matter where in the world we live,
 
we are all of us.....human beings.
 
Instinctively, they seem to find
 
inspiring websites,
 
talented musicians 
 
and the most touching YouTube videos
 
 from around the world.
 
And so, please enjoy the following,
 
compliments of my nieces:

 
Wishing you all
 a peaceful, healthy and
Happy New Year
wherever you live and love
 in this world.
 




Thursday, December 17, 2015

Absurdity and a Broken Foot

"The absurd hero's refusal to hope becomes his singular ability to live in the present with passion"
-Albert Camus

Things have been a little hectic at the Peters household.

Would you expect anything less from us?

Our latest adventure?

The kind-hearted Nicholas has broken his foot.

He stumbled on the last few steps of our stairs and twisted his ankle, coming down hard on the right side of his foot, landing with a very loud BOOM!

He hobbled over to a chair in the living room, embarrassed and wincing in pain.

Children diagnosed with PWS do not feel pain, the sensation is diminished. Since he was hollering that it hurt, I knew something was wrong. I pleaded with my sobbing son and asked if I could please take a look at his foot. After a lengthy and very tearful negotiation, he agreed.

I tried to keep a straight face as I observed a very unnatural swelling.

It looked like he had broken a bone.

Luckily, Pete had just walked in the door from work. I told him not to get too comfortable as it appeared we needed to transport our youngest son to the hospital.

Welcome to our world.

The question was:

Do we travel into Boston during the height of rush hour traffic?

Or do we visit a local hospital for an x-ray?

More of those nasty decisions.

We both agreed to keep it simple and head to the nearest pediatric hospital to see if, in fact, his foot was broken.

We arrived at the hospital where luckily, the waiting room was empty. We were directed to the x-ray room and greeted by a pleasant, young attendant who took several pictures of the brave boy's foot.

We were whisked back to the ER room.
The physician called us into her office and told us that Nick's foot was indeed broken.
In fact, he had torn off a small piece of bone.


She explained that they couldn't cast it until he was evaluated by a pediatric orthopedic surgeon. Since there was an unattached piece of bone floating in his foot, she told us there was a good chance he may need surgery to remove or "pin" the bone back together. She fit Nick with a temporary Velcro-type cast and referred us to a local specialist.

On the drive home, Pete and I decided that we would call Children's Hospital in Boston to decide how to move forward in treating Nick's injury.

But in true Lisa Train fashion, as we made our way back to the home-front, our not-so-trusty vehicle began to lose power.

The dashboard lights began to dim, the headlights shut off and the engine began to sputter. Pete guided the wounded vehicle off the road and safely into the service station that was situated directly in front of us.

The garage staff was mostly muscled and male and dressed in grease-covered blues. Luckily for us, these mighty mechanics took pity on us and seemed genuinely concerned about our ailing son and unusual predicament. Their stoic and intimidating demeanor melted away like butter as these gruff-looking bulldogs transformed into playful pussycats. They sprung into action, kindly arranging for our transportation home and agreeing to have our vehicle fixed by the very next day.


We were amazed by our good fortune as these guardian angels in disguise seemed as if they were strategically placed on our path to provide us with assistance. We did not even need a tow since our vehicle died as we entered their parking lot. We realized at that moment that we had made the right decision not traveling to Boston. Can you imagine stalling on the expressway into the city?

Oy..!

Anyway, the next day I called Children's Hospital but without a vehicle to get there, Nick's visit would have to wait. The ortho staff decided to place him on the surgery list for the following morning so the specialist could review the x-rays and operate if necessary.

They explained that Nicholas would need to fast over night. But for a child hard-wired to eat, fasting is nothing short of a torturous request. After the trauma and pain he had already endured; he would now need to withstand more difficulty.

But in true Nicholas fashion, he soldiered on.

Without complaint.

We awoke at 12 am to give him his breakfast so he would not feel deprived of food, a little trick we learned from previous surgeries. At 5:30 am our entire family loaded into our newly-repaired vehicle and arrived in Boston by seven o'clock.

In the orthopedic unit, we were met by an eager young intern who observed the x-ray film and like the ER doc before him, suggested that we prepare for surgery. He told us the surgeon would be in shortly to advise us.

We waited on pins and needles.

At long last, a bespectacled and disheveled doctor fluttered into the exam room.


He explained that Nick would not need surgery.

He was certain however that Nick could not tolerate crutches and a cast and instead suggested he be fit for an ankle support device. He explained that it was a convoluted contraption designed out of laces, Velcro and straps but it would be very effective in immobilizing his foot and allowing it to heal. He said he was confident Nick's foot would heal nicely and we did not need to return.

Pete and I let out our breaths and laughed at the absurdity of our life.

Despite "the doc's" diagnosis, I was thankful that we have an appointment in a few months with Nick's regular orthopedic surgeon, who just so happened to be on vacation this week.

And as for Nicholas?

He was genuinely happy.

Unaffected by the chaos.

Thinking instead about what he was going to eat for breakfast.


"I draw from the Absurd three consequences: my revolt, my liberty, my passion."
-Albert Camus