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.
 




Sunday, December 20, 2015

125

I believe too often we underestimate children.

Let me explain.

As part of Nick's transition to his new school, it was agreed that a PWS presentation would be offered to his entire 8th grade class. This, I believed, was important so fellow students could understand how to relate better to Nick.

The idea arose from the inclusion success we experienced last year at his previous school. You may recall Nick's sixth grade teachers asking me to speak to their students about inclusion and the tremendous response that occurred once the children were enlightened.

To learn more, read here.


Nick's new school however, was not interested in allowing me to speak to their kids. In fact, parental involvement has always been vehemently discouraged in this school district. So instead, it was suggested a PWS "expert" present the show. I decided it really didn't matter who gave the discussion, as long as the children were educated, so I agreed.

A speaker was hired and scheduled to visit the school in November. A letter was sent out to parents informing them of the upcoming assembly and providing an opportunity for those students who were not interested to opt out.

A few days before the big event, I received a call from the special ed coordinator. She informed me that the "expert" expressed deep reservations about speaking to middle school children. She feared that students at this level would not want to help. She feared that Nicholas would be bullied.

Since this was an "expert" making these statements, the coordinator canceled the speaking engagement and begged me to reconsider my request.

I used only one word to answer her:

NO

I told her "the so-called expert" seriously underestimated these students.

I told her I knew this because I had done this before. I had spoken to teens about inclusion and experienced spectacular results. I described how last year's students became enthused about inclusion and wanted to help. I told her how several teens expressed how they were no longer afraid and appreciated learning about how to relate to children diagnosed with special needs. I told her how the experience moved students, teachers, and administrators to embrace change.

Still, she did not believe.

"Middle school children are different," she said.

"No," I argued, "They will surprise you."

She disagreed.

But since my request was written up as part of Nick's IEP, she had no choice but to comply.

She agreed to move forward but requested that SHE give the presentation. She asked to use the PWS PowerPoint slides I had presented to the staff. She asked if I would attend the assembly as her assistant, there only to answer any medical questions.

But I had no idea how well she could speak.

The PowerPoint presentation was my baby, my blood, sweat and tears. Would she do it justice? Did she have an ability to connect with an audience, particularly one she didn't trust.

I was worried.

When suddenly I was struck by an idea.

I realized I had a chance to enlighten not just the children but this  "nonbelieving" special ed coordinator too. I couldn't resist.

"Let's do it!" I told her.


The big day arrived. The coordinator was nervous. I told her not to worry and that she would be pleasantly surprised by the student's response. I told her she was about to change the world.

Still, she did not believe.

We entered the empty auditorium where the PowerPoint projector was prepped and ready for our use. Unfortunately, however, the remote control to change the slides was missing.

Luckily, the assistant principal entered the room. I asked her if she or one of the 8th grade teachers could kindly help us to switch slides?

She laughed in my face at my audacious request and told me that I should be grateful they were attending at all. It was clear from her tone that the teachers were NOT interested in this inclusion presentation. They were not convinced that this would work and resentful to be asked to participate in such a ridiculous farce.

I ignored her behavior and told the coordinator I would switch the slides.

Slowly, the students began to enter the auditorium.

They were excited and animated, speaking loudly among themselves. More and more students arrived, filling the room to it's capacity, most of them sitting directly up front. Nicholas and I were seated before the crowd.

The assistant principal stood beside us and held up her hand,

"Quiet down," she barked, "We are here today to learn more about one of our new students"

The boisterous crowd became silent.

The coordinator who was standing quietly behind the podium, began to speak.

She was nervous and spoke very softly.

In an effort to finish, she breezed through the slides too quickly

I began to worry that she was losing the audience, neglecting to pause after each slide to give the crowd a moment to reflect.

But the presentation was filled with powerful images and it appeared that folks were listening.

"Sometimes real superheroes live in the hearts of small children fighting big battles"

She finished the show in record speed and asked,

"Does anyone have any questions?"

There was complete silence.

No one moved.

The coordinator shoulder's sank, her worst fears realized, the kids, she believed, were not ready for this.

The assistant principal smiled smugly.

But I knew better.

I sprung from my chair to speak directly to the children.

"I know what you're thinking. This is scary stuff. I was scared once too. And I am Nick's mother. But right now we have an opportunity, a chance to learn all about this frightening stuff. In fact, once you ask your questions, I am sure you will find that its not so scary after all. You will find that Nick is the BEST friend you could ever have. He will not talk behind your back. He will never say an unkind word. He will ALWAYS be happy to see you. So, please raise your hands and ask the questions you want to ask."

I looked beside me and asked Nick if he wanted to say anything to the children. He smiled and turned his head to the side, telling the kids,

"Aw Mum, I'm too shy."

That was all it took. One by one, a few hands went up.

The coordinator, using a microphone, walked over to the students and asked them to speak their questions directly into the hand piece.

"Will Nick always have this?" A brave boy asked.

"What is a seizure?" another one said.

"Where is Nick's classroom located?"

"Is he coming with us to Camp Kiev?"

And pretty soon a sea of hands shot up from the crowd, a mighty collection of boys and girls, all wanting to know more. The coordinator ran from one side of the room to the other trying to keep up with all the questions. The students were motivated and engaged, anxious to learn exactly how they could help Nicholas.

I was surprised to see a few teachers raise their hands.

The assistant principal's jaw dropped open wide as she stood speechless beside me.

Soon, we ran out of time. The bell rang to signal the end of our time together.

The coordinator announced loudly to the students that before they left, there was a sign-up sheet located up front for anyone who was interested in visiting Nicholas in his classroom.

In one collective movement, all of the students rose and headed toward the front. No one left.

Lines and lines of giggling students clogged the aisle-ways.

All of them interested in one thing,

getting to know Nick.

The response was overwhelming.

The coordinator and assistant principal scurried out of the room to rustle up more pens and paper so more children could enlist.

What was immediately noticeable, at least to me, were the smiles on the student's faces.

The kids, I believe, were inspired, hopeful to have an opportunity to make a difference and become empowered.

It was a beautiful bonding experience for the entire room of participants. The energy was electrifying.

Surprisingly, on the face of the special ed coordinator....a tear.

I thanked her for her bravery.

The very next day, I received an email from her. She told me that a boy she did not know approached her in the hallway and said,

"Nice speech!"

She told me the assistant principal made a special effort to describe the energized climate at the staff meeting held shortly after the presentation. At the meeting the teachers were inspired and exuberant, anxious to discuss ways of including Nicholas into their classes.

And the number of students who signed up to come visit Nick's classroom you ask?