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, April 30, 2013

What a Picture is Worth to Weston

Like most teenagers his age, Weston is all about the music.

But it is no longer just the catchy beat that captures his attention, he has found a powerful ally in the words and images of certain songs.

"Mom," he told me yesterday. "I would like to get a new t-shirt."

"OK," I replied, "we can go shopping tomorrow."

No Mom, you don't understand!" he said in his I can't believe I have such a annoying mother tone.

"I want to get a t-shirt with the Quiet Riot guy!" he said emphatically.

"Quiet Riot?" I asked "The guys that were popular when I was growing up?" I asked in disbelief.

"I don't know, but this is the picture on their album cover," he said and showed me this.



"Weston," I said, "that's kind of a disturbing image."

"No, it's not Mom." he said seriously.

True to my absolutely clueless mother colors. I did not understand. But I decided to probe my son further.

"What do you mean Weston?"

"Well, do you see how he's wearing a straight jacket?"

"Yes," I answered.

"That is how I feel."

"I'm not following Weston, can you fill me in?" I asked tentatively, careful not to close the door on my enlightenment process and the secret thinkings of my teenage son.

"Well, sometimes, no matter how hard I try, I can't control my body. Like in the morning, when I tease Nicholas, my hands seem to fly out on their own. If I had one of these cool-looking straight jackets, I wouldn't be doing that all the time. I wouldn't have to try so hard to control myself all the time."

I froze for a second while my heart dropped into my stomach.

Suddenly, I realized, what it was like to be diagnosed with ADHD. Weston's impulsive nature has caused him to be reprimanded both at home and at school for most of his entire life.

That this straight jacket should be like a Godsend to my son, made me incredibly sad.

I held it together though and continued to probe him.

"How about the metal mask? That looks kind of scary."

"No Mom, that's the most important part," he said, "that would help me to stop blurting and saying things I don't mean."

That was it, I had to leave the room.

I thought back to when Weston was in kindergarten where he collected more "blurt cards" than baseball cards. He was humiliated and constantly identified by the teacher, as the "bad" student who couldn't raise his hand.

"Weston, I said, Let's see if we can find a Quiet Riot t-shirt on-line."

I headed to the computer and performed more research into the band, Quiet Riot.

I discovered their biggest hit:

"Come on Feel the Noise" (not how the band spells it)

I was not surprised that my sensory sensitive son should be attracted to a song that talks about "physically feeling" music. And how to Weston, "loud noise" also helps him to be quiet.

Another of their hits is:

"Metal Health".........not "mental" but "metal" as in "heavy metal"

Some of the lyrics to this song........

"Well I'm an axe grinder Pile driver
Mother says that I never never mind her
Got no brains I'm insane
Teacher says that I'm one big pain
I'm like a laser, 6-string razor
I got a mouth like an alligator
I want it louder
More power
I'm gonna rock ya till it strikes the hour"


It is now crystal clear to this clueless mother exactly why this band and their music and album covers, resonate so vividly with my continually reprimanded child.

Weston no longer feels like he is all alone.

A while back, I wrote a post called; "Heavy Metal, an Antidote to ADHD" Click here to read it.

I am now convinced of the many therapeutic qualities this type of music has for a child diagnosed with ADHD.

Now, if I could only get ADHD experts like Ed Hallowell or Russell Barkley, to agree.


Saturday, April 27, 2013

A Tribute to the Mindless Menace of Violence by Robert F. Kennedy

I was born and raised in the Boston area. It is my home.

I realize however, that it may not be your home.

I questioned whether the Hopeful Parents website was an appropriate place to express my thoughts on the Boston Marathon bombing. After much inner reflection, I realized that these recent acts of hatred and intolerance affect not just the folks who live in Boston, but all human beings on this planet who are devoted to the pursuit of peace.


When the seeds of intolerance were planted in Boston, a vicious cycle of hatred began to spread within our society. It wasn’t long before Internet chatter began to promote selfish discontent, minimizing these inhumane acts and fertilizing the cancerous spread of civil unhappiness.

If we are to end the vicious cycle of violence, then no matter where in the world these atrocities occur, we must meet violence consistently with solidarity and resistance, with our own personal acts of selflessness and compassion.

“Let no one be discouraged by the belief there is nothing one person can do against the enormous array of the world’s ills, misery, ignorance and violence. Few will have the greatness to bend history, but each of us can work to change a small portion of events. And in the total of all those acts will be written the history of a generation.” - Robert F. Kennedy

The evils of hatred affect us all, including our special needs community for it wasn’t so long ago on July 14, 1933, that the German government instituted the “Law for the Prevention of Progeny with Hereditary Diseases.” This law called for the sterilization of all persons who suffered from diseases considered hereditary, including mental illness, learning disabilities, physical deformity, epilepsy, blindness, deafness, and severe alcoholism. With the law’s passage the Third Reich also stepped up its propaganda against the disabled, regularly labeling them “life unworthy of life” or “useless eaters” and highlighting their burden upon society.

Hatred reared its ugliness again on April 15, 2013 when two bombs exploded during the running of the Boston Marathon.

To me, the Boston Marathon is a symbol of inspiration, courage and hope, an event where individuals strive to become better human beings. Many runners compete to commemorate loved ones or to raise money for incurable disease.

It is a sacred event.

The finish line is a place where many families and children gather to watch their loved ones return safely from their journey. That this should be the place where bombs were detonated seems particularly abhorrent to me.

I feel an incredible sense of sadness and loss.

I am sad to be reminded once again, that I live in a world where such reckless and unbridled hatred exists.

I feel a loss for the precious lives that were taken so mercilessly, an abominable side-effect of what happens when those among us hate.

It is interesting that the lives of the four victims of this barbarous act exemplified selflessness. Again and again, loved ones described Martin Richard, Krystle Campbell, Lingzi Lu and Sean Collier, as kind and peaceful spirits with a unique strength and a decency of the human spirit.

They remind me of another kind and peaceful Massachusett’s native who also lost his life by the cowardly hands of a violent other.

It is ironic that Robert F. Kennedy gave this speech on April 5, 1968, the day after Martin Luther King Jr. was assassinated ….45 years ago….almost exactly to the day.

It is chilling how relevant his speech is to current events.

For those of you who do not wish to read, I have also attached a video below of his famous speech he entitled:
 
The Menacing Madness of Violence.

 “This is a time of shame and sorrow. It is not a day for politics. I have saved this one opportunity, my only event of today, to speak briefly to you about the mindless menace of violence in America which again stains our land and every one of our lives.

It is not the concern of any one race. The victims of the violence are black and white, rich and poor, young and old, famous and unknown. They are most important of all, human beings whom other human beings loved and needed. No one- no matter where he lives or what he does – can be certain who will suffer from some senseless act of bloodshed. And yet, it goes on and on and on in this country of ours.

Why? What has violence ever accomplished? What has it ever created? No matyr’s cause has ever been stilled by an assassin’s bullet.

No wrongs have ever been righted by riots and civil disorders. A sniper is only a coward, not a hero, and an uncontrollable mob is only the voice of madness, not the voice of reason.

When ever any American life is taken by another American unnecessarily – whether it is done in the name of the law or in the defiance of the law, by one man or a gang, in cold blood or in passion, in an attack of violence of in response to violence – whenever we tear at the fabric of life which another man has painfully and clumsily woven for himself and his children, the whole nation is degraded.

“Among free men, said Abraham Lincoln, there can be no successful appeal from the ballet to the bullet and those who take such appeal are sure to lose their cause and pay the costs.”

Yet we seemingly tolerate a rising level of violence that ignores our common humanity and our claims to civilization alike, We calmly accept our newspaper reports of civilian slaughter in far-off lands. We glorify killing on movie and television screens and call it entertainment. We make it easy for men of all shades of sanity to acquire whatever weapons and ammunition they desire. Too often we admire swagger and bluster and wielders of force; too often we excuse those who are willing to build their own lives on the shattered dreams of others…..

Some look for scapegoats, others look for conspiracies, but this much is clear; violence breeds violence, repression brings retaliation, and only a cleaning of our whole society can remove this sickness from our soul….

I have not come here to propose a set of specific remedies nor is there a single set. For a broad and adequate outline we know what must be done. When you teach a man to hate and fear his brother, when you teach that he is a lesser man because of his color or his beliefs or the policies he pursues, when you teach that those who differ from you threaten your freedom or your job or your family, then you also learn to confront others not as fellow citizens but as enemies, to be met not with cooperation but with conquest; to be subjugated and mastered.

We learn at last to look at our brothers as aliens, men with whom we share a city, but not a community; men bound to us in common dwelling, but not in common effort. We learn to share a fear, only a common desire to retreat from each other, only a common impulse to meet disagreement with force. For all this, there are no final answers.

Yet we know what we must do. It is to achieve true justice among our fellow citizens. The question is not what programs we should seek to enact. The question is whether we can find in our midst and in our own hearts that leadership of humane purpose that will recognize the terrible truths of our existence.

We must admit the vanity of our false distractions among men and learn to find our own advancement in the search for the advancement of others. We must admit in ourselves that our children’s futures cannot be built on the misfortune of others. We must recognize that this short life can neither be ennobled or enriched by hatred or revenge.

Our lives on this planet are too short and the work to be done too great to let this spirit flourish any longer in our land. Of course we can not vanquish it with a program, nor with a resolution.

But we can perhaps remember, if only for a time, that those who live with us are our brothers, that they share with us the same short moment of life; that they seek as we do, nothing but the chance to live out their lives in purpose and in happiness, winning what satisfaction and fulfillment they can.

Surely this bond of common faith, this bond of common goal, can begin to teach us something. Surely we can learn at least to look at those around us as fellow men, and surely we can begin to work a little harder to bind us the wounds among us and to become in our own hearts brothers and countrymen once again.”
 
 
It is interesting that the end result of this violence was the worldwide publication of Martin Henry's message of peace to the world.
 
 
I support his dream
 
 Perhaps this world is a world in which children suffer, but we can lessen the number of suffering children, and if you do not do this, then who will do this? - Albert Camus

Please click on the icon below to visit me today at Hopeful Parents
 
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To donate to the families who were effected by this tragedy, please click on this badge.
 

Monday, April 22, 2013

Dr. O and Inclusion

I would like to introduce you to Dr. O. This is the principal of Nick's new school. He is a kind and gentle man. But what sets this man apart from others, at least to me, is his ability to understand the meaning of the word "inclusion".



I believe whole-heartedly in leadership. I believe that those who guide us must understand the important responsibility they have of modeling behavior that exemplifies the spirit of human decency and respect for others.

My son, Nicholas is in a substantially separate classroom at his school, not because he is different but because he learns best in this type of environment. Unfortunately, this separateness can sometimes manifest, as a feeling by other students, that he is different. It creates an opportunity for others to exclude him, to forget that he is also a fifth grader, like any other.

Dr. O does not forget.

This is the opening ceremnoy of the newly constructed gym. All of the students were very excited to see it. Dr O was determined that Nicholas and his best friend, Alex would be included in this celebration.



Below, is a photo of Nicholas and his best buddy, Alex. You may remember from an earlier post, that they also spent time together in Dr O's office for swearing....and to tell you the truth, I do not know what made me happier, the time they spent with others in the gym, or the time they spent like any other child, being reprimanded by the principal.


Either way, they were not treated any differently.
Thank you Dr. O. for showing this school, what inclusion looks like.

Tuesday, April 16, 2013

No Place for Hatred

I was born and raised in the Boston area. It is my home.

To me, the Boston Marathon is a symbol of inspiration, courage and hope, an event where individuals strive to become better human beings. Many runners compete to commemorate loved ones or to raise money for incurable disease.

It is a sacred event.

The finish line of the Boston Marathon is a place where many families and children gather to watch their loved ones return from their journey. I have cheered many runners from this location.

That this should be the place where bombs were placed, seems particularly abhorrent to me.

I feel an incredible sense of sadness and loss.


 
I am sad to be reminded, once again, that I live in a world where such reckless and unbridled hatred exists.

I feel a loss for the precious lives that were taken so mercilessly,

an abominable side-effect of what happens when those among us hate.

Four people have died as a result of this violence, two women, one child and one young man. To me, the lives of these individuals exeplified kindness, peace and the depth of our human spirit.

 
Martin Richard, an eight-year-old child from Dorchester, Mass. was killed in the explosion. He was cheering for runners at the finish line with his family. His mother and sister, have also sustained serious injuries. Martin was a keen baseball player, climber, runner and was a member of Savin Hill Little League team. His family is beloved by their community where they contributed in many ways.


Krystle Campbell, a restaurant manager from Medford, Mass. was also killed as she cheered for friends at the finish line. Friends and loved ones describe her as a smiling, happy, youthful, and selfless person.


 Also killed while watching the race from Boylston Street was Boston University grad student, Lingzi Lu from China. She is described as sweet-hearted, passionate about the piano, and a stand out statistic student. She was a daughter who always made her father laugh.


The brother of slain MIT Police Officer Sean A. Collier remembers him as a person born to be a lawman, a person with a compassionate heart that drove him to help others, and a country music fan with two left feet who still managed to learn how to square dance.

My thoughts and prayers are with these families and all who have suffered by this heinous act.

I do not know that I will ever understand such violence.

"Hatred which destroys so much, never fails to destroy the man who hates, this is the immutable law."

Still, I am not comforted and pray that the minds behind this evil act can someday know sanity and peace.

But amidst the smoke and carnage, many heroes have emerged.

It is on these individuals, and the innocent victims, that I would like to focus my attention and my healing thoughts.

 
 


 
 

These are my heroes

To donate to these families, and others injured by these tragedies, please click on the icon below or visit: www.onefundboston.org.

 

It is extraordinary to me, that the final outcome of this hateful act was the worldwide publication of  Martin Henry's message of peace to the world.
 
 
I support his dream.
 

Tuesday, April 9, 2013

Two Smokestacks

You may remember Nicholas and I spent much of last year meeting with therapists, doctors, specialists and neuropsychologists. He was prodded and poked, tested and evaluated, all in an effort to help us understand why he was not progressing at school.

I would not give up believing in Nick's potential to learn.

Pete and I became so frustrated with Nick's deteriorating situation, we hired a special needs attorney.

Perhaps you remember her?



It was a very difficult time for us, not to mention an expensive one, since hiring a pitbull comes with a very hefty price tag.

This year however, I am delighted to report that Nicholas has made some tremendous academic progress, despite his many absences!

He was unable to read when he enrolled in the new school in October.

Today, he is reading at a second grade level and quickly approaching the third grade tier!

How cool is that?

I am elated. And although our struggles last year to find an appropriate placement for Nick may have actually taken several years off my life, I am happy to report that it was all worth it!

Nicholas has made some tremendous gains in other areas as well. The adaptive gym, music and art classes have eliminated his previous tantrumming. He is no longer overwhelmed in these large, noisy classes. He continues to receive PT, OT and ST services but no longer requires behavioral consults.

Most importantly, however, to Nick's success has been his social development.

Nicholas has significant difficulties following along in an integrated classroom. Even with aide assistance, the pace was overwhelming. So, he was placed in a substantially separate class this year with several children who share similar disabilities. Ironically, they also share similar verbal abilities so they were able to develop friendships very quickly. He now has five fellow students who see him, not as a classroom pet, but as a true and contributing equal.

One of these friends is Alex.

Similar to Weston, in his energy level and love for fast vehicles, Alex has become Nick's best buddy. They laugh and giggle and motivate each other to learn.

Nicholas tells us many stories of their adventures at school together....even the bad ones, like their experimentation with "colorful" new words and the resulting time they spent in the principal's office because of it.

One of Alex's passions is large trucks.

(Another similarity to Weston and I am quickly realizing why Nicholas is drawn to this boy)

But not just any large truck......

He loves large trucks that have two smokestacks.


Nicholas now wants "in" on this action.

Yes, believe it or not the Dora backpacks have taken a back seat to Hess trucks and tankers with two smokestacks.

Nick's friendship with Alex has influenced our entire family.

Weston nearly dropped his teeth when Nicholas introduced him to Alex's Hess trucks. As you may remember, they were at the top of his birthday wish list.


For me, it is the smokestacks.

Every morning on our way to school, Nicholas and I count the number of trucks we see with two smokestacks. We do it so often, I am embarrassed to say, it has become a habit.

"Two smokestacks!" I shouted this morning to no one in particular since I had already delivered my truck-loving son to school!

But Nick's laid-back spirit has also had a positive effect on Alex.

According to Mr Doyle, Alex relies on Nick's calm spirit and laid-back energy to soothe his wiggly energy. Alex is not himself when his friend Nicholas is absent from school.

There have been so many positive changes in Nicholas since starting this school, he is like a different boy. He is mature, happy and talkative, sharing his busy day's events with the entire family. He is no longer just an observer. He seems to participate more in conversations and activities, sharing thoughts and ideas. It is as if he was jump-started back into life.

Yes, this change was indeed a good one.

Our hard work was rewarded.

I can finally breathe and Nicholas can finally read!

For those of you struggling with a poor school experience, I highly recommend you adopt one of these.



Thursday, April 4, 2013

The Ten Minute Rule

Children diagnosed with Prader Willi Syndrome often experience issues related to poor motor planning.

Motor planning difficulties are also known as dyspraxia, a life-long coordination disorder. The word dyspraxia comes from the Latin word "dys" meaning ""difficulty with" and the Greek word "praxis" meaning "acting" or "doing".

Motor planning is the ability to order, plan, sequence and execute a series of intentional motor actions.


Apraxia is the term that is used to describe the complete loss of this ability.

Dyspraxia can effect:
Gross and fine motor skills
The organization of movement (planning what to do and how to do it)
Speech and language
And the ability to carry out activities of daily living

Nicholas experiences motor planning difficulties in all of the above. It presents itself as a kind of slow motion delay. He knows exactly what he wants to say or do....it just takes him a moment to do it., like he is moving in slow motion.

As a parent or caregiver, you must learn to be PATIENT.

Any effort to hurry Nicholas along, will lead to extreme anxiety. Once anxiety sets in, motor planning is further inhibited. If he is speaking, he will begin to stutter. If he is doing something, his body will freeze and he will become immobile.

As a result, transitioning from one activity to the next is difficult for those diagnosed with PWS.

As a caregiver you must recognize this difficulty and build in some supports to assist your child.

This has been a very difficult concept for me to learn since I like to do everything fast. Patience is not a word I easily embrace.

I am a "get it done" kind of gal. I like to make a list and cross things off. I go, go, go...often in fast motion. Unfortunately, this type of freewheeling lifestyle is not conducive to a person who suffers from motor planning difficulties. As a result, Nicholas becomes easily overwhelmed. Over stimulation will cause him to shut down and eventually tantrum.

So, what's a fast-paced mother to do when she is parenting a slow motion kind of a boy?

I have developed something I call, "The Ten Minute Rule"

For example, Nicholas has difficulty transitioning from playing at home to getting in the car and going to school. Any effort to move him quickly will result in a tantrum and an "I don't want to go to school" mentality.

After many years of struggling with this behavior, I have learned to give Nicholas a ten minute notice. Ten minutes before it is time to go, I will say things like,

"Nicholas why don't you pick out some items that you would like to take to school. How about your Umi Car? Alex would love to see that."

This is his cue that it is almost time to go to school. He knows he has about ten minutes to collect some "transition" items, things like backpacks or candles, physical items he holds in his hands to help him transition without anxiety. For Nicholas, carrying something in his hands gives him a sense of security and purpose. It relieves his anxiety.

Next I will say,

"Here's your coat, let me help you put it on,"

I am careful never to use expressions like,

"You have ten minutes before it is time to go to school."

This is an anxiety inducer and creates a sense of extreme panic in Nicholas.

I am careful to slow down my movements and my rate of speech. I provide him with cues that inform him of the "next step" in getting ready. It is also imperative that I am calm. Like a shark who smells fear in its victim, Nicholas can smell when a person is stressed. A calm demeanor in the caregiver is the glue Nicholas uses to hold himself together. Without it, he is lost and does not know how to function. It is like someone who is visually impaired relying on another person's sight.

I have become an expert at repressing my urgency.

For Nicholas, the ten minute rule has alleviated his transition tantrums.

For me, I have learned that slowing down produces less stress.

I have learned that stopping to smell the roses is sometimes an excellent way to get us to school quickly.


Wednesday, April 3, 2013

Birthday Evolution

To celebrate Weston's birthday and recent school acceptance, we visited his favorite restaurant last night.


Where he had heaping plates full of giant crab legs, fried chicken wings and crispy spring rolls. For dessert, our server brought out a chocolate cake and sang happy birthday to the smiling new 14 year-old.

We had a great time laughing and celebrating.

At home, there was more cake and lots of presents to open.



This year's most highly requested toy by Weston was a Hess truck.

What is a Hess truck you ask?

This is a Hess truck.



And although I am a clueless mother, I must confess that this toy vehicle looks pretty cool when its lights are illuminated.












Even dear old Dad enjoyed playing on the carpet with these lighted boy beauties.


As I watched the gang playing trucks on the living room carpet, I thought back to the many phases of Weston's birthday requests.

First, there were the Matchboxes and Hot Wheels. Hundreds and hundreds of tiny life-like vehicles that saw plenty of their own carpet time with Weston. In fact, I am certain you will still find a Hot Wheel or two in Weston's school backpack.

 
 
Then there was his ride-on Jeep
 


Next came the Tonka dump trucks


Then the more sophisticated Bruder trucks...


The very long Lego phase.....


And now of course, the ipods, headphone and fashion phase.


I guess you could say I am becoming well-versed in the world of boys and their toys. I am assuming as he gets older, not much will change, except, of course, the price of his latest obsession.


Happy Birthday Dear Weston