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.




Monday, February 28, 2011

Mrs. Bissaillon

Mrs. Bissaillon is the gym teacher at the Perley Elementary School. She is a stern woman who rarely smiles.

Her preschool and kindergarten gym classes are unusually well behaved. The word on the playground is out; the kids have been warned. This woman has no tolerance for misconduct.  It is as if the milk cartons in the cafeteria contain dire warnings and photographs of kids who misbehave in her class. She reminds me of a hardened Marine Drill Instructor as she barks out commands to her classes of tiny terrified tots.

"Joshua, if you can not be quiet and listen to my instruction, you can go sit over on the bleachers until you can." she barks. The once rambunctious child is jolted into submission as he hangs his head and slowly shuffles over to the bleachers to serve his sentence and pray that his photo does not appear on the milk cartons.

Before Nicholas started kindergarten, my 8-year-old son, Weston was relentless in his horror stories of Mrs. Bissaillon. Being a rambunctious child himself, and having served plenty of his own time on the bleachers, Weston made it very clear to Nicholas, this was not a teacher to underestimate.

Even parents dropping their children off at school in the morning seem to avoid any unnecessary eye contact with Mrs. Bissaillon. The mere sight of her seems to conjure up their own nightmarish memories of tyrant teachers and days spent in detention halls.

I must admit, I too, am afraid of her.

So, you can imagine my surprise when one day Mrs. Bissaillon boldly marches up to speak directly to me. Thoughts run amok inside my head as I desperately try to prepare myself for what she is about to say.

She can’t be complaining about Weston this time, he’s at the middle school now, I think quietly to myself. It can’t be me; I don’t even go to school any more! Did I look at her funny? Does she notice the cold sweat on my forehead when I walk past the gym? Thoughts speed through my brain like ping pong balls. Then, as if a bucket of cold water is thrown over my head, I realize, oh no, it’s Nicholas!

More thoughts, faster this time, oh no, he had one of his tantrums, probably the full-blown kind where he throws himself to the ground, kicking his feet and screaming. That’s it, and now she’s starting to speak. I close my eyes to prepare myself for what’s coming. I am ready to hear how she is dedicating an entire bleacher section to me to help remind others of what happens to those with poor parenting skills.

“Mrs. Peters!” 

“Yes?” I ask tentatively, cringing just a little bit.

“I need to tell you what a delightful little boy your son Nicholas is!” And for the first time in Perley Elementary School history, she smiles.

“What?” I ask.

“That’s right, she says, “Can I tell you just how hard this little boy works! Our first activity in class is running two laps around the gym. Your son led the class for the entire two laps!”

I am completely speechless. Her words have paralyzed me. I struggle to visualize my son actually winning a running race. She is still smiling as she continues her description of the day’s events.

“He ran two laps, played our beanbag game, and still had enough energy to help all the other children pick up their bags. He listened very closely to all of my instructions. But there is something else,” she says.

This is where she tells me about the tantrums, I think.

“Your son looks at me with such love in his heart.”

I am stunned. I look at Mrs. Bissaillon and quickly realize, that like Nicholas, this woman is often misunderstood. Underneath her hardened exterior, beats the heart of a deep and loving woman. She sees my son for who he is, a unique and contributing individual, not a horrific diagnosis. She is one of the truly special few.

Why was Nicholas so cooperative in class I wondered to myself? Was Weston able to strike fear into his heart?  Or was it something else?  Did he see something the rest of us could not?  Since his birth, Nicholas has developed many beautiful gifts. But the gift that touches me most, is his innate ability to seek out the individuals who seem to need the most love. He finds the souls in this world who are the most misunderstood, the most tormented or just the most saddened.  He finds the Mrs. Bissaillons of the world and he speaks to them. Sometimes with just a smile but more often it is with a warm and enthusiastic “Hello!”  The response to his enthusiasm, no matter how tormented, misunderstood or saddened folks feel, is always the same, a smile.

To me, it is as if my son has been sent from above with a very special mission, simply to love the world. There are days when the reality of Prader Willi Syndrome gets me feeling down. It is on those down days that I like to watch my son closely, as he gives his special gift so medicinally to the silent sufferers of this world. And with his unselfish acts of kindness, my silent suffering also comes to an end, at least for a moment.

“Did you hear me?” Mrs. Bissaillon asks, snapping me out of my thoughts and back into reality.

“Yes,” I say smiling at her, and suddenly she looks very different to me.


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Thursday, February 24, 2011

Professional Patients

While many parents worry about the effects of too much TV on their children, or how cell phones and social networking may occupy too much of their kid's time....I, on the other hand, have a different problem.

My kids spend too much time in doctor's offices.


At their young ages of 11 and 9, my sons have become professional patients.

Nicholas was diagnosed at birth with Prader Willi Syndrome. Before we left the hospital together, we were given a long list of upcoming appointments with doctors and specialists. So began our "healthcare" lifestyle of visiting a variety of physicians every four to six months.

He is followed by:
Endocrinology
Neurology
Gastroenterology
Opthamology
Orthopedics
Urology
Hematology
Nutritionist
ENT
Cardiology
Orthotist
Pediatric Dental Specialist

Add to that: yearly physicals, flu shots, and sick visits, not to mention, hospital stays, EKG's and long term EEG's.....and you understand our predicament.

NOW...add to this the list of Weston specialists:

Psychiatrist
Psychologist
Orthodontist
Neuropsychologists

And of course my Mom, who sees:

Pain Management Clinic
Psychiatrist
Endocrinologist
Nephrology
Primary Care
Hematology

It is not too difficult to see, where my children and I spend most of our time.

I must admit, my children are becoming very good at epitomizing "perfect patients". Armed with cases of matchbox cars and backpacks stuffed with toys, my kids are prepared to wait. I, of course carry the necessary food items, handy wipes and antibacterial soap.

We arrive in the waiting room where I check-in and the boys quickly claim a section of floor area in the waiting room, usually by the window. They quickly note the location of the nearest bathroom. They scan the usual array of lame waiting room toys: blocks, puzzles and the occasional musical toy with batteries that stopped working ten years ago. It isn't long before they tire of the overused and under-supplied toy content. But they are no amateurs, having anticipated this scenario, they occupy their time with toys they have brought from home.

As we transfer into the exam room area, Weston grabs a seat near the window and pulls a construction vehicle out of his pocket, he hums quietly to himself as he moves the vehicle precariously along the edge of the window sill. Nicholas carries his latest Dora backpack, finds an empty seat and occupies his time by zipping and unzipping the various compartments of his favorite carrying device.

It isn't long before one or both of my children need to go to the bathroom. Having located it upon arrival, they know exactly where they need to go. I pray that Nicholas does not need my help.

When they return from the bathroom, the doctor is usually present. The exam and follow up questions are tolerated half-heartedly by the boys. After a few, "Are you done yets?" from the now impatient children, followed immediately by glaring looks from me, we finish up with the latest specialist of the day.


Before we leave the doctor's office,  I smother all of our hands with antibacterial soap.


As we head out of the office, I check out with the receptionist who hands me a card that tells me........of course.........when we need to return!


I have millions of these......

I am hoping that all of this exposure to the health care field will have a positive effect on my children. Perhaps they too will become healers of some kind, helping others and caring for people? Or maybe they will be the first to design cool waiting room toys or "mommy-less" bathrooms with toilets that flush quietly for a change! Whatever they become, I do hope they look back upon these times with happiness and a good memory or two of the many doctor visits we spent together.

Monday, February 21, 2011

My Secret Garden

I have a place in my mind that I go to......

Where there is no noise.

It is quiet.


No voices from doctors requesting more tests.

No voices from the indifferent with words that hurt.

It is a place that is sunny and warm, a place where my children can run and play happily together.



In my mind they are laughing, free from the crippling effects of their disease.

Nicholas is healthy and strong. He is muscular and slim, no longer plagued by constant hunger. He is running and jumping while he throws a baseball up into the air and catches it with ease.

Weston is calm and relaxed. He is lying in the fragrant grass on the banks of a lazy stream where he is resting and reading a book.

My garden is filled with healthy green bushes whose buds burst with blossoms of colorful flowers, red, orange and yellow.

The air is filled with their perfume.




















There is a narrow dirt pathway that winds through my garden. It is a path only I can follow. Along the path are benches. There is one placed under the shade of a sturdy oak tree that sways gently by the breath of warm summer breezes.


There is another bench perched on the shore of  a sparkling blue ocean. The waves crash onto the shore in rhythmic pattern, slowing the pace of my racing heart.


In my secret garden my mind is released from the day-to-day routine of tracking doctor appointments and managing medications. There is no need for worry. The health of my children is assured. My family is safe.


My secret pathway leads to a small stone cottage with a garden by its side. In the garden, my father, now back to life, lifts a brilliant red tomato the size of a softball. He smiles and waves to me.


Inside the stone cottage, my mother awaits, her vibrant spirit revived, her mind brilliant and clear, freed from the ravaging effects of dementia. We sit at the wooden kitchen table to sip coffee while we hold hands, talking and laughing together.

This is my secret garden, my sanctuary.


It is the place in my mind that I go to when I am fatigued by the incessant stress that accompanies the role of raising children with special needs.

It is a place where my body is no longer tense.

My shoulders are relaxed.

My mind is free from worry.

There are no obligations or appointments.

No thoughtless words from others.

There is only love and peace

and serenity.

I am reborn, my soul is restored, my heart mended, my mind clear.

It is a place where I find my lost inner strength, my precious healing magic energy that helps me to endure.

It is a place in my mind that I go to.........to find myself.

Sunday, February 20, 2011

Motor Tics and a Missing Mojo

Last weeks visit to the Neurologist has me feeling deflated. Not only did we learn of the passing of our dear friend, Dr. Stavros, but we also discovered that Nicholas has started to develop some motor tics.

Typically, I am a positive soul, always looking for the gifts in the rubble, this week however, I must admit, I have lost my mojo. I am finding it hard to rebound back to my usual self. I am feeling overwhelmed.




In the last few months, Nicholas has developed this unusual blinking symptom. We notice it particularly when he eats. In the past, we have always thought that these were absence seizures, since Nicholas was diagnosed with ESES, a type of epilepsy that includes these kinds of "mini seizures".

The frequency of this blinking has increased in the last few months. We have also noticed a disruption of his speech, an increase in his weight and some unusual shivering spells. The blinking had worsened at school too, as I received a call from his teacher concerned about his potential for choking at lunchtime.

During our visit with Dr Takeoka, our wonderful Neurologist, we discussed these issues and had Nicholas eat his lunch so the doctor could witness this unusual blinking phenomena. Dr Takeoka watched Nicholas carefully and made several notations. I was certain these were seizures so you can imagine my surprise when Dr. Takeoka told me he thought Nicholas was experiencing involuntary motor tics.

"Motor tics?" I gasped, my mind now spinning out of control as I wondered if Nicholas had acquired yet another diagnosis.

Dr Takeoka explained that since there was no change in Nicholas after these events, they were considered "a tic". He said there could be many reasons why these were occurring. His first thought was that they could be a result of Nicholas' thyroid hormones. Thyroid levels that are too high or too low will cause several of these symptoms. Since Nicholas does indeed have hypothyroidism, and we have not checked these levels for over a year, this could be the culprit.

He also noticed that over the years, during the winter months Nicholas seems to exhibit more of these events. If it is his thyroid, then simply increasing his dosage of levothyroxine should help eliminate the problem.

If hormone levels are normal, then we begin the difficult task of eliminating variables. According to Dr Takeoka, some children will develop transient tics during their childhood. The reason is unknown. Anxiety, however, can be a trigger. Usually the tics will disappear as the child ages. Some tics however, can persist throughout a person's life. If the tics persist and become disruptive to Nicholas's daily life, then medication can be prescribed. Anti-anxiety medication is used as the treatment. Of course, Dr Takeoka does not want to treat Nicholas with medication unless it is absolutely necessary. We are going to wait to see the results of Nicholas's blood work.

I fired off a barrage of questions and the wonderful doctor answered all of them honestly and completely. Dr Takeoka is another kind and patient caregiver who blesses our lives. We are indeed fortunate to have him on our team.

Needless to say, my husband and I left Dr Takeoka's office feeling sad and overwhelmed. And although Nicholas's blinking is bothersome at the most, and certainly not a life threatening situation, to me, it is just one more "condition" that plagues my son and prevents him from being the best that he can be.

I guess what's more concerning to me, is I need to find my mojo. This is that mythical magic spirit within me that has always been there to help me face a challenge with fierce determination and steadfast love for my son. The spirit eager to grab my sword and look those motor tics in the eye and say.....I am not afraid. I will defeat you too. It is a power borne from love for my son that has helped me to overcome any obstacle. It is what has always defined me.










I believe that I am suffering from some kind of  "special needs battle fatigue". I have taken this weekend off. I am spending time with my husband and children. I am taking the phone off the hook and relaxing with a good book and perhaps a stiff drink. I am not a drinker, and lightweight that I am, will usually fall fast asleep after just one drink, but in this case I think I may make an exception.














Perhaps a cold margarita and some warm sand will help me get my mojo back.

Wednesday, February 16, 2011

Our Healer, Our Hero

I dedicate this post to the memory of:

Dr. Stavros Hadjiloizou
Pediatric Neurologist and Neurophysiologist
Dr Stavros was a Pediatric Neurologist at Boston Children's Hospital from 2003 - 2007. He moved back to his home country of Cyprus in 2007, where he founded the Cyprus Pediatric Neurology Institute (CPNI) with his colleague Dr Paulo Nicolaides. Together they offered, for the first time, a place in Cyprus where many young children who suffered from neurological illness could receive treatment.

He was a member of Doctors of the World and founded the Cyprus Child Development Foundation, which treats children with multiple disabilities and neurological issues.

Dr Stavros died of a massive heart attack on Dec 22, 2010. He was 43-years-old, husband to wife, Machi, and father to 14-year-old daughter Semeli and 9-year-old son Iasonas. On Christmas day, his family donated his organs for transplant giving hope to four suffering fellow human beings and their families.

We learned of this news on Monday during our latest Neurology appointment for Nicholas.

I am heartbroken.

I am saddened beyond words.

When Nicholas was 3-years-old, Dr Stavros diagnosed him with ESES, a rare and insidious form of epilepsy. Over 80% of Nicholas's sleep was interrupted by subclinical seizure activity. He experienced absence and drop seizures. He lost cognitive and occupational skills. His behavior began to worsen. Under Dr. Stavros's instruction, we began an immediate course of medication treatment which lowered the frequency of Nicholas's nighttime seizure activity and stopped further cognitive and physical delays.

Dr Stavros saved Nicholas's life. But more importantly, he saved the quality of his life. How do you ever thank someone for this?

Dr. Stavros had an inner light, a warm spirit that radiated kindness and generosity. He would place Nicholas in his lap and ask "How are you today, my friend?" He made us feel like we were his favorite patients. I suspect he made all of his patients feel this way.

He was kind, friendly and funny, making jokes about his last name and how no one could pronounce it, or spell it!  He had an inner peace that seemed to come from doing what he loved to do...helping to heal children.  His smile was genuine. His happy energy and positive spirit was contagious, warming all who worked beside him.  He was one of those unique individuals who could make you smile simply by standing next to you.

He quickly became a good friend to us, spending hours with us in his office answering all our questions and alleviating our fears about epilepsy. So often he would stop me in my "panic mode" and remind me that we were a fortunate family since Nicholas's condition was indeed, treatable.

He wasn't afraid to share his personal life with us, explaining about his dream to move back to Cyprus and start a unique Neurological Center for the many suffering children and their families. When the day came for him to leave, I cried selfishly, knowing we were losing a very special man in our lives. 

Dr Stavros was successful in achieving his dream. The Cyprus Institute of Child Neurology is a thriving medical facility, a place where many children and their families receive support and care. It is a shining legacy to Dr Stavros and his beautiful dream.

Since we have heard the news of Dr Stavros passing, my husband and I have been in shock, desperately trying to hold back the sobbing tears that want to flow furiously from our hearts. It is hard for us to work or function in our daily lives. We are both saddened that the world has lost this special spirit, that we have lost such a warm and wonderful friend.

Dr Stavros passing has taught me that we expect much from the healers in our lives. We expect them to heal us. We expect them to be perfect. We expect them to always be there. We do not expect them to die. We have many expectations, we have few words of appreciation. I realize now that the healers in my life are indeed human and not exempt from God's hidden plans for all of us.

So, thank you to all of the healers in our lives. We appreciate all of you.

Thank you Dr. Stavros. Your assistance to us during our most difficult and heartbreaking time was like a gift sent directly from God.

We miss you and feel the great loss of your presence, your shining light.

It is a sad time for us for you will always be our healer, our hero.

Reluctance
Out through the fields and the woods
And over the walls I have wended;
I have climbed the hills of view
And looked at the world, and descended;
I have come by the highway home,
And lo, it is ended.

The leaves are all dead on the ground,
Save those that the oak is keeping
To ravel them one by one
And let them go scraping and creeping
Out over the crusted snow,
When others are sleeping.

And the dead leaves lie huddled and still,
No longer blown hither and thither;
The last lone aster is gone;
The flowers of the witch hazel wither;
The heart is still aching to seek,
But the feet question "Whither?"

Ah, when to the heart of man
Was it ever less than a treason
To go with the drift of things,
To yield with a grace to reason,
And bow and accept the end
Of a love or a season?

by Robert Frost
I'll see you again when the stars fall from the sky.......and the moon turns red over One Tree Hill
by U2

Our sincerest condolences to his family and co-workers, we think of you and send our prayers.

Sunday, February 13, 2011

She has Lost Much of Her Muchness


Mad Hatter:  (to Alice) You used to be much more..."muchier." You've lost your muchness.


I have just watched Tim Burton's movie: Alice in Wonderland and was struck by this quote from the movie.

It is in fact, a perfect description of what happens to a person who suffers from dementia.

My Mom, Evelyn was once an intelligent, sharp-witted and delightful spirit. She loved to talk and dance and listen to music. She was strong-willed and confident and although she stood only 5 feet tall, she seemed more like a giant to me. Her spirit was filled with much muchness.

She enjoyed doing crossword puzzles and always knew how to spell a difficult word.
Her personality exuded sparkle and effervescence.
She was always the one you trusted when you needed good advice.
She was straight-forward, wise, finding solutions easily to the most difficult problems.
She was afraid of no one.
She was a wonderful teacher, educating her 4 children on the importance of things like confidence, independence and self worth.

I have stood by helplessly as I have watched my mother slowly succumb to this horrible disease.

It has effected her mentally, robbing her of her short term memory and her impressive intelligence.

It has effected her physically. She was once swift and light, moving like a feather dancing through this world. She is now stiffened and hunched walking slowly, painfully and always with the use of a walker.

It has effected her spirit, dulling that sparkle in her eyes, subduing her positive attitude and replacing it with crippling anxiety and overwhelming depression.

The once fiercely independent woman is now almost entirely dependent on many others to help with her day-to-day care and mental health.

I miss my mother terribly and feel somewhat swindled that she is lost to me when I need her most as I raise my children with complex needs.

I am saddened that my children will never know the fiery spirit that once was.

It is like a prison sentence to me, watching this once dancing and vibrant flame slowly flicker out. The doctor and therapy visits seem useless, only prolonging her pain. I feel so very helpless. I feel angry and sad. I feel like I am failing my mother.

The painful and agonizing effects of dementia have robbed my mother of her muchness and left her much........less.

It has left me, my family and the world with much, much less.

Friday, February 11, 2011

The Cat Who Thinks He's a Dog

I think our cat is having an identity crisis.

He is 14-years-old which translates into about 75 in kitty years. He has been a part of this family even before the kids were born.

I am concerned because lately he is acting an awful lot like a dog. I think he is confused. I do not know if cats suffer from "kitty dementia," but I think Bandit might have acquired something like it.

Let me explain:

1) He comes when he is called.
That's right, all I have to do is say, "Here kitty, kitty, kitty, kitty!" and no matter where Bandit is leisurely relaxing in the house, he jumps up immediately and bolts over to my ankles where he will weave in and out between my feet as if he were skiing the giant slalom.

2) He waits at the door for me when I arrive home.
No matter how long I am gone from the house, when I arrive home he is waiting for me at the door. Like a faithful dog waiting for his master, Bandit sits obediently by the door, wagging his tail I do believe.

3) He begs for table scraps at dinnertime.
This one really has me perplexed. Lately, Bandit has firmly planted himself under Nicholas's chair at dinner time. He waits for a morsel of food to fall, and when it does, he whizzes past Muffy and pounces on the stray strand of pasta or runaway green bean. Who ever heard of a cat that eats green beans?

4) He has calm and assertively declared himself "Master of the House."
With one lightening fast swipe of his paw, he has sent Muffy howling into her crate, declaring himself the unconditional dominant male of the household. 

Lately, he has even become somewhat of a bully. I have found myself actually scolding the cat for terrorizing our now neurotic dog.  His latest escapade is planning a clever "surprise attack" on Muffy. He waits patiently behind a corner and then boldly sneaks out "aaaaahaaaaaaa" pouncing aggressively on our poor, anxious Beagle who howls "aaaaoooooooo" in a high pitched panicked cry as she runs once again to the safety of her crate.

More than a few times, I have chased Bandit away from the door of Muffy's crate. It is almost as if he is taunting her, daring her to come out of the cozy confines of her "cat-free" crate.

The little bugger has even planned a surprise attack on me a few times. He hides covertly at the top of the stairs silently waiting for me to climb them.  He then sticks his paws between the rails on the upper landing, hoping to swipe at my hair as I climb quickly past.

I do not know if it is his age or the many years he spent as the unwilling participant of boyhood antics, but whatever the reason, Bandit has found his courage and has become more like a dog. He is indeed his alter ego of "kitty pit bull" and without a doubt, the new "Master of the House."

Now, if he starts barking, I am definitely taking him for a visit to the vet!

Tuesday, February 8, 2011

911, Mother, and an Invention Necessity

She did it again.

Yep, the little old lady from the Village once again figured out a way to call 911. Once again, the cavalry comes with lights flashing and horns blaring over to the assisted living facility where the now (very familiar!) woman with dementia has falsely sounded the alert.

And once again, my mother's phone was removed from her room.

One of the most debilitating aspects of dementia is the accompanying anxiety issues. This high level of anxiousness seems to effect dementia patients between the hours of 3-7 pm. Physicians call this "sun-downing" and our mother Evelyn, suffers from it greatly.

My crafty brother, John has "modified" her phone several times in an attempt to enable her to call only us and not 911 during these times of high anxiety. His latest phone modification effort included the use of super glue. He was able to glue the "9" and the "1" buttons, so they would not be operational. He programmed our phone numbers on her speed dial pad and "voila" we had a phone that fit the bill.

Or so we thought!

The problem with having a mother diagnosed with dementia, who also happens to possess a superior intelligence and dogged determination, is that she will undoubtedly figure out a way to get what she wants.

Clever Evie simply dialed the operator.

Ahhhhhhhhhhhh!

So, this time, my brother and I performed major reconstruction surgery on our fourth newly purchased "Mom" phone.

Take a look.......


The round gold metal piece on the upper right hand corner of the phone is a lid from the top of a bottle of Greek olives. It has been super glued to cover the answering machine functions.

The oblong, beige piece is a broken "chip clip", this has also been super glued and covers the programming buttons.

The large square metal piece is the cover of an herbal tea box, it too is super glued and covers the number buttons.

The post-it note provides instruction-for-use of this unusual phone.

We installed this new device in our mother's room last night.

We are awaiting the results. I am hopeful that we do not find it in pieces hurled out of her window!

Johnny and I have decided to patent our newly invented dementia wares. We believe there is huge market potential within the dementia community for phones with restricted dialing and bottles of aspirins that look like Tic Tacs!

Who was it that said ...Necessity is the mother of invention? They obviously never had a mother diagnosed with dementia. Otherwise, it would have read:

Our mother and an invention necessity!

Sunday, February 6, 2011

Pete and the Giggly Girls from Perkins School for the Blind

My husband, Pete is 6'1 and weighs 200 lbs. He is an ex-marine, although he will argue there is no such thing as an ex-marine. He is an HVAC mechanic for a union company in Boston that is listed as one of the top Fortune 500 companies in the country. Some of their customers include: Harvard University, Boston Children's Hospital and Perkins School for the Blind.

Now, while my husband is a quiet, big, bulky kind of a guy, he is also the father of two children diagnosed with special needs. Beneath his large, hardened exterior beats the heart of a kind and loving man. It is very rare that he allows others to see this side of himself.

His company often sends him to work on equipment at Perkins School for the Blind. Pete has told me several times that he takes his work there very seriously. He will do whatever it takes to ensure these students are always comfortable. He makes sure the kids are toasty warm in the winter and comfortably cool in the summer. More than a few times, he has come home from visits there with tears in his eyes.

Last week, once again, Pete was working at Perkins. As he carried his heavy tools from one building to another, he had to pass through a large courtyard which was covered with deep snow. A narrow walkway with high snow banks was plowed through the deep snow enabling students to pass safely from building to building. The passage was barely wide enough for two adults to pass each other comfortably.

As Pete walked down the narrow path, he saw up ahead three pre-teen girls with canes, walking, talking and laughing with one another. The giggly girls were so busy talking and laughing, they were completely oblivious to the fact that there may be someone up ahead. Without a thought, the mighty Pete jumped up and into the mountainous snow bank which flanked the narrow walkway. He floundered (tools and all) in the deep snow that was up to his waist as he waited for the giggling girls to pass. As they passed he said hello and like typical pre-teen girls, locked in conversation, they didn't hear him. They passed the large, strange man protruding incongruously from a snowbank without even a hesitation in their conversation.

After they passed, Pete climbed out of the deep snow, brushed himself off and smiled as he thought to himself.........preteen girls are all alike no matter where they go to school..


For those of you who may be unfamiliar with this amazing school, here is some history for you.

Perkins School for the Blind

From their website:

A historic painting of the Perkins campus from the Charles River.
The foundations of the future are rooted in the past.
A trip to Paris to see the world's first school for the blind in the early 1820's convinced medical student Dr. John Fisher of the dire need for such a school in America. Upon his return, Fisher and some friends applied for and received a charter from the Commonwealth of Massachusetts to establish a school for the education of blind students. Perkins school was incorporated in 1829 and using rooms in his father's Boston home for classes, the director, Samuel Gridley Howe, opened the doors of the school in 1832.

Just one year later, the school moved to a larger home owned by Thomas Perkins, vice president and a trustee. Within six years, student enrollment grew to 65. Perkins sold his home and donated the money to the school so it could convert a hotel in South Boston. The school still bears Perkins' name as a testament to his generosity.

About this same time, Samuel Gridley Howe began to establish a separate printing department in the school to produce embossed books. Howe hoped to entice well-known authors to use the school to emboss their books. As fate would have it, Howe attracted the attention of Charles Dickens, who used Perkins School to print and distribute 250 copies of his book, The Old Curiosity Shop.

Dickens visited Perkins in 1842 during a lecture tour of America and was amazed at the work Howe was doing with Laura Bridgman, a young deaf blind girl who came to the school in 1837. So impressed was Dickens that he wrote about his visit in his book, American Notes. Years later, Kate Adams Keller, mother of a young deaf blind girl named Helen, read the book. The book provided a ray of hope for the couple's six-year-old daughter, Helen Keller, who lost her sight and hearing when she was only 19 months old.

Helen was born in 1880, the same year the Samuel P. Hayes Research Library was founded at Perkins. It's considered the largest repository of its kind in the world. It contains the most recent and complete information on the non-medical aspects of blindness and deaf blindness. Its vast collection includes books by and about Helen Keller.

In 1887, Perkins Director Michael Anagnos sent graduate Anne Sullivan to teach Helen Keller in Alabama. That same year, the school established the first kindergarten for the blind in the United States. After working with her pupil at home, Ms. Sullivan returned to Perkins with Helen Keller in 1888 and remained there until 1893.

The school outgrew its home in the hotel and desperately needed more space for the children to run and play, so it moved to its present 38-acre home on the Charles River in Watertown, Massachusetts in 1912. Perkins continued to develop "firsts." For example, the Hayes-Binet test was introduced in 1920 and revealed that the intelligence of the blind population is no different from those who can see.

As the school evolved, so did the population. Perkins changed its charter in 1982 to accept students with multiple disabilities other than blindness. A major grant from the Conrad N. Hilton Foundation in 1989 made it possible to expand Perkins' services throughout the U.S. and in 50 developing countries through Perkins' International Programs.