Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 12, diagnosed with Prader-Willi Syndrome and Weston 14, 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, April 13, 2014

Yes, No, Maybe?

The bitter and relentless cold of winter has finally released its grip on New England. Spring has begun to thaw our frozen land. Brilliant sunny skies and warm temperatures bathe me and my fellow inhabitants with an overwhelming sense of happiness accompanied by a feeling that we have survived something brutal.



Ironically, I am  hopeful that this feeling of steadfast endurance mixed with great relief and resiliency... will carry over to influence my current health issues.

I visited with a local rheumatologist this week, who examined me thoroughly and extracted more blood samples. She asked me many questions and performed an office test to determine if I had dry eyes...really? Trust me, you don't want to know what this feels like.

When she finished her exam she explained that she could not diagnose me with lupus. The symptoms I was experiencing, she believed, were too nonspecific. I did not possess many of the more debilitating symptoms like the classic rash and disabling arthritis  She strongly recommended that we perform the biopsy.

I was disappointed that I could not explain my swollen gland issue with a lupus diagnosis and must now face a greater risk that I may indeed be diagnosed with lymphoma.

My primary doctor telephoned me the next day. I am thankful for her quiet intelligence, her calm spirit and her steadfast determination to uncover my hidden ailment. She was calm and supportive. She had spoken to both the lymphoma specialist and the rheumatologist to create a plan for moving forward.

The lymphoma specialist contacted the chief of surgery/oncology at Dana Farber and requested she perform my biopsy. Her name is Dr Monica Bertagnolli and I thought immediately of Valerie Bertinelli. I thought that perhaps this was a message from beyond..... since she was in the 1970's show: "One Day at a Time"?

Kinda fitting, huh?

Later in the day, I received a telephone call from her secretary, Ellen. She was a kind, gentle woman. She told me I was in very good hands. She said the doctor was both a compassionate woman and an excellent surgeon and had performed a biopsy on Ellen herself. I felt immediately comforted.

My biopsy is scheduled for Monday.

My primary called me again to check on the date and time of my procedure. She reiterated that the lymphoma specialist wanted me to be clear that if I do receive a lymphoma diagnosis it is not aggressive and we have caught things very early.

I do not know what I am facing.

I am nervous and scared.

Hubby however, reminded me that I need to take my own advice and trust in my life. He reminded me that this challenge is being presented to me at this moment.....for a reason. It is too soon to understand why, but instead of resisting the lesson, I need to submit to it. I need to rest my body and prepare for the battle that may lie ahead.

Trust me when I tell you, submission is not a word I use in my vocabulary.

I had to laugh. My husband knows me well. By comparing this situation to a battle....I can relate. If you are a reader of my blog, you know I have often used soldiers and superheroes as a description of my role as a special needs parent.

Perhaps once again I am being reminded to replace this image...


With an image more like the old shepherd woman, strong and resilient, and yet gentle and wise, bending like a reed through adversity, only to straighten again once the winds have subsided.

photo by Leyla Alyanak: The Many Faces of Albanian Women
 
This photo is a more reflective representation of my heritage. This Albanian woman looks almost exactly like my 90-year-old great grand mother, Constantina, who was born in Albania and emigrated to the United States with her son in the late 1920's.

This woman is also in her 90's and I can't help thinking that it is no accident that she and my great grandmother enjoyed long, healthy lives.

Please keep us in your thoughts and I will keep you all posted.

Tuesday, April 8, 2014

The Man

Once again the Peter's family piles into our trusty vehicle and heads into Boston for a visit to a prestigious hospital. This time it is off to Dana Farber Cancer Institute for an appointment with a lymphoma specialist. This time for me.

It is incredibly ironic how often we find ourselves in this exact same scenario.

Pete forgoing work (and pay) to transport his family safely through the congested city streets and into the hospital district of Boston where several intimidating health care giants like Beth Israel, Brigham and Women's, Dana Farber Cancer Institute, Joslin's Diabetes Center and Children's Hospital stand faithfully huddled around Harvard Medical School like a team of strapping concrete football players circling their quarterback.


We arrive early to acquaint ourselves with this new hospital.

Unlike the chaotic atmosphere at Children's, where families and children run loudly and freely about; the atmosphere at Dana Farber is noticeably quiet and subdued. Visitors travel together in silent twosomes, their mood, somber and reserved.

I am thankful of the pre-hospital visit discussion we had with the boys about the importance of being quiet and respectful to others.

The hospital is decorated with lots of rich mahogany paneling and soft yellow lighting. I feel as if I am in the library of a Harvard Medical School professor and I wonder if this is the intent of the designers.

We locate the rather elegant hospital cafeteria and notice that much like Children's Hospital the prices here are equally extreme.We find a cozy table by the window. The boys pull out their trusty backpacks and begin to entertain themselves.




We are used to this drill. The boys have become true professional patients, capable of entertaining themselves through long extended wait times.

The occupants in the cafe are a quiet mixture of patients and professionals. There are no children.

We finish our breakfast and head to the second floor registration where a pretty young woman directs us to a registration cubicle. A woman there greats me by name and directs me to an attendant. She is tall and pretty.

She asks me a variety of questions and then asks.....

"What is your nationality?"

I tell her I am half English, half Albanian and wait for the usual reply of where on earth is Albania? I am pleasantly surprised when she tells me...

"I am Albanian too."

I am astounded since this is now the second time in a hospital setting that I have met a fellow Albanian. I feel immediately comforted and wonder if someone is trying to tell me something.

I am directed to another pretty assistant. She places an emergency call button on me and I am immediately aware of the potential seriousness of my condition.The staff is unusually personable and respectful. I must admit I feel like patient royalty and suspect once again that this is their intent.

We gather the family and head to the 8th floor. I check in and we are directed to another waiting area. It is located next to many large windows. Pete begins to gasp. Outside our window is a view of this monstrosity.

the large "unit" on top of the building with the 2 smokestacks
 
Pete nearly explodes with excitement.
 
"Look at that chiller!" he exclaims and I am certain he is about to pass out.
 
He does not get to admire the modern marvel of monster air conditioning for long as we are called almost immediately in to see the doctor.
 
The well dressed physician arrives into the examining room and I am struck by his calm, professional and healing energy. There is a certain level of doctor that I meet from time to time that seem to possess an almost magical presence. They are calm and confident. They radiate brightly with an unusual shine of gentle fearlessness. To me, they are the true healers.
 
I am immediately comforted.
 
Pete shakes hands with the confident professional and scurries the boys out of the exam room and toward the direction of the nearest gift shop.
 
I sit alone with the physician.
 
He asks me to explain why I am here. He stops me a few times to ask a few questions. The information my primary has sent to him is not complete, he says. He was not aware of my positive ANA test and new lupus diagnosis. He does not have a copy of my MRI.
 
"Let's call your doctor, shall we?" he asks and picks up the phone to call her.
 
This is a first for me.
 
He speaks pleasantly to her and asks her a few questions.
 
"I did not know that Lisa had a positive ANA. It was not included in your information. Did you do a titer on that blood sample? If she is having a lupus episode that number should be higher. This does not make sense."
 
I am pleased to have this experienced man now on my team.  
 
He exchanges more pleasantries with my primary doctor and quickly hangs up the phone.
 
"Well, he said, I need to see your MRI. I will have my assistant get a copy of the films. She is very good at getting laboratory personnel to jump through hoops. Once I see the films, I will review them with our radiologist and will call you immediately with my findings. I believe there is a good chance you will need a biopsy. I would suggest we take a small sample or perhaps even the entire lymph node. In the worst case scenario if you do indeed have lymphoma, I am quite certain that it is indolent, meaning non-aggressive and there is a good chance we would not treat it and instead adopt a wait and see attitude."
 
I am relieved. And can breathe freely for the first time in weeks.
 
I tell him I would prefer to have the biopsy done here at Dana Farber. He agrees.
 
He asks me who I will be seeing for Rheumatology. I explained that I took the first available appointment with a specialist at Brigham and Women's. He seems pleased that it is an associate that he knows very well. I too am pleased.
 
He smiles and shakes my hand.
 
"I will call you as soon as I am able."
 
I feel confident that I will hear from him shortly and fortunate to live in an area with such an unusually high number of healers and hospitals.
 
I leave the office feeling lighter, a heavy load loosened from my visit with this gentle man.
 
I search for my family and find them...where else....but the hospital gift shop where Weston has found something with 4 wheels and a tail pipe and Nicholas has found a small carrying case with two zippers.
 
Thank you to everyone for your well wishes and offers of support.
 
I will keep you all posted.
   


Wednesday, April 2, 2014

The Wolf

 
Canis Lupus

The wolf spirit comes to you when you are feeling lost and do not know where to go. He guides you and will be your protector as you make your journey on a new unexplored path to gain inner sight, wisdom and experience.

But to enter into the forest means that you must be willing to face your own deepest fears. Wolf must venture deep into the forest to find what he requires for sustenance and growth.

If you are a reader of my blog, you know I believe in the interconnectedness of all things. Animals, nature, and spirit communicate to us in many unusual ways, delivering important messages...if we choose to listen.

Why do I write to you today about the spiritual significance of the wolf?

Because I, dear friends, have been diagnosed with Lupus.

Unfortunately I am also experiencing severe symptoms of swollen lymph nodes and may receive an additional diagnosis of Lymphoma.

I am facing my biggest fear.

About a month ago, I noticed a lump under my armpit. It was a swollen gland. The next day, the gland in my right arm pit also swelled, followed almost immediately by my neck glands.

I suspected that I was going to get sick, that this was perhaps a virus. But no other cold symptoms surfaced. I visited immediately with my primary.

She sent me to a surgeon who performed a chest x-ray and ultra sound of the lymph nodes under my arms. There was no mass detected in my chest and lymph nodes were swollen but not unusual. Phew.

She sent me back to my primary.

My primary was still very concerned and ran a slew of tests.

She collected 20 vials of blood along with urine and stool samples. She ordered an ultrasound of all my internal organs and an MRI of the swollen nodes in my neck. She examined each lymph node but did not like the feel of several toward the back of my neck.

Results of the ultra sound revealed that inner organs look unaffected. Phew again.

The blood test however, indicated that something was indeed off.

Two tests, my ANA and strand DNA indicated an autoimmune response and was enough to support a diagnosis of Lupus.

There is however, a very strong connection between Lupus and Lymphoma. She cannot rule out an additional diagnosis of Lymphoma.

I have been scheduled for an apt with a Rheumatologist who coordinates the care of those diagnosed with Lupus.

Lupus is a chronic condition that occurs when the body's immune system goes into overdrive and begins to attack the body. The skin, kidneys, heart, lungs, joints, blood and brain are the most vulnerable areas. It appears I may have had this condition for awhile but never noticed it since my symptoms were mild.

Results of my MRI indicate that many lymph nodes are swollen. None of them are necrotic. That's good.

Radiologist however, suggests biopsy.

A biopsy is the only way to confirm a lymphoma diagnosis.

I have requested that my physician work with a specialist at Dana Farber Cancer Center in Boston to coordinate my care. I have an apt with him tomorrow.

As the parent of two children diagnosed with special needs. This is my biggest fear.

I am unusually calm however. Perhaps it is all of the diagnoses we have endured as a family that has made me more resilient in handling this news.

I am, afterall, a long time passenger on the Lisa Train.

 
Please keep us in your prayers and I will keep you posted.

*my comment section is still not working well, if you prefer, you may reach me at jalape04ATcomcastDOTnet.

Friday, February 28, 2014

A Lockdown for Kitty

My son Nicholas is 12 years-old. Although he is in the sixth grade, he possesses the spirit of a child who is much younger. He delights in watching preschool television programs, admiring the colorful cartoon characters like Dora the Explorer and Diego the Animal Rescuer.

I believe the genius programmers working at Nickelodeon have actually achieved a kind of kid's television nirvana. They seem to have secretly extracted information from the depths of my young child's mind and created super kid heroes who spend their days traveling on adventure-filled expeditions rendering life-saving assistance to hurt animals and sad children. It is as if these television creators have turned our flat screen into a giant crystal ball. This magic square window grants them direct access to the malleable mind of my impressionable boy. Like a drug addict seeking crack cocaine, Nicholas is hooked....but good.

Nickelodeon's latest new kid's series entitled, Paw Patrol, features a hardy group of backpack carrying pups. These brave rescuers drive a variety of heavy equipment vehicles, sending my awestruck automobile and animal aficionado into a gasping and breathless type of kiddie coma.

It is not unusual to hear Nicholas singing along with this lively litter of puppy police.

"Paw Patrol, Paw Patrol, whenever you're in trou-ble. Paw Patrol, Paw Patrol, we'll be there on the dou-ble!"

I believe Nick's choice of rescue-related programming is contributing to the development of a kind spirit and an altruistic mind set. In fact, if you combine his obsession for action adventurers with the recent safety drill training he received at the elementary school, perhaps you would not be surprised to see this super sleuth junkie transformed into the New Rescue Hero of our House.

Let me explain.

As you may know, we recently acquired a kitty who has quickly grown into a full-sized cat. This rapid growth however, has been accompanied by some unusual behaviors. Our feisty feline seems to have developed a sadistic streak. He delights in playing a game of Hide and Pounce Warfare, a kind of Hunger Games for cats.


He has become an emotionless destroyer of dogs and humans. A kitty-sized serial killer hiding covertly behind bookshelves or furniture, stealthily waiting for a chance to viciously pounce on an unsuspecting family member or our poor panicky pooch. He has bitten and scratched unprotected arms, legs, ankles and the wagging tail of our horrified hound.

This aggressive behavior has disturbed the kind-hearted Nicholas.

But fear not dear friends, for our little hero is quick to take his cue from a rather long list of favorite cartoon caricatures. My Rescue Hero Wanna-be has designed a strategy to protect the entire household from the warmongering antics of our militant mouser.

This morning, I was in my bedroom preparing to take Nick to school, when I was startled by a loud sound.

SLAM......went the sound of Nick's bedroom door closing tightly.

Just Nick closing the door too hard, I thought to myself and carried on with what I was doing.

I jumped again when I heard a rather long succession of...

SLAM

SLAM

SLAM

I hurried out of my bedroom door only to find the cat streaking down the stairs in a frenzied bolt of flying black fur. The cats quick exit, a desperate attempt to escape from my safety-savvy son, who was in the midst of quickly slamming all the bedroom doors. This dramatic action, a carefully planned preparedness training procedure designed by Nicholas to deter the malevolent marauder from further maliciousness.

"It's lockdown Mom," he barked with a calm, yet assertive tone.

"Why are we in lockdown?" I asked, trying very hard not to laugh as the new Self-appointed Safety Sheriff began his first ever trial-run.

He placed his hands on his hips and with teacher-like authority, he slowly explained to his clueless mother,

"We have to protect ourselves from Flash. We need to be ready. You know Mom, sometimes people and CATS can hurt us."

 
Paw Patrol Rookie Recruit
 
Click on icon below to visit me today at Hopeful Parents
 
http://www.hopefulparents.org/2014/02/a-lockdown-for-kitty.html
 

Saturday, February 15, 2014

Nasty Weather and Mystery Illnesses

What is it about my children and cataclysmic weather events?

You may recall our harrowing drive through Hurricane Sandy to seek an answer to Nick's swollen gland issue?  Well this time dear readers, it's all about Weston. Yes, during the height of Winter Storm Pax, a furious ice, sleet and rain storm of epic proportions, yours truly was transporting the ailing boy to an important gastrointestinal appointment.

 
Welcome to: The Lisa Train
 
Poor Weston has been struggling with chronic diarrhea issues. Last summer you may remember we visited with our GI doc at Children's Hospital. She performed blood tests, physical exams and a colonoscopy/endoscopy. The end result of all this testing seemed to indicate a propensity for Irritable Bowel Syndrome, a condition often associated with children diagnosed with autism. Weston was put on an antibiotic to calm his intestinal tract and prescribed fiber pills to help build bulk.
 
Weston did well on the antibiotic/fiber program but Dr Fishman explained that he cannot be on the antibiotic long term. We stopped this medication in December. Since then, his diarrhea has returned with a vengeance. He is fatigued and pale-looking. When he stepped on the scale he had lost a staggering 11 pounds.
 
Weston's peaked appearance frightened me. I called for the first available appointment with Dr. Fishman. The only opening was on Thursday at the height of the storm. I looked at Weston and decided to risk it.
 
So, on Thursday, while most folks were riding out the storm at home, we were making our way slowly to Children's Hospital North.
 
The 20 minute drive took us well over an hour.
 
 
When we arrived for our appointment, Dr. Fishman was disturbed by Weston's appearance and weight loss. She performed a blood test to check his liver functioning and performed a physical exam where she felt a hardened stool that seemed to be blocking his intestine.
 
She explained that she suspected a few possible culprits for Weston's issues. Either he had inflammation, a malabsorption issue or a possible intestinal infection. Blood tests would tell her more.
 
She prescribed a weekend bowel clean out, then a resuming of the antibiotic/fiber regimen.We scheduled another visit for next month.
 
When we finally exited the doctor's office, the storm was raging. Roads were snow covered and icy. The wind had started to pick up. As we made our way north up the highway, we saw three separate accidents on the opposite side of the highway. Each vehicle had spun out on the icy roads. One, had ended up over an embankment looking something like this (not my photo)
 
 
 
The 4 lane highway had narrowed to only one drivable lane.
 
I was terrified but put myself in that Special Needs Warrior Mother Mode and continued on slowly in a trance-like, highly-focused driving state until we arrived home safely.
 
I am thankful that we made it, but even more grateful for this week's February vacation.
 
We need the rest. 
 
Will keep you posted on Weston's results.
 

Tuesday, February 11, 2014

A Fond Farewell to Dora?

It is no secret that my son Nicholas loves Dora the Explorer.

I do not know what it is that attracts my son to this little dark-haired beauty and consummate adventurer but I suspect it has something to do with her big heart and bottomless backpack.

But unfortunately it has been a troubling obsession for Nick since so many individuals remind him so often about how Dora the Explorer is a show designed for girls.

Nicholas however, has been unabashed by this scorn. He refuses to succumb to any peer, parental or adult pressure. In fact, he has made a firm believer out of many a poor soul who may have been previously troubled by societal manipulation and the humiliation associated with nonconformity.

Nick just didn't care.

He is true to his own heart.

But this year, he and Alex, his favorite school mate, have ventured into the new and exciting world of heavy equipment and mighty monster machines. You may recall his attraction to colorful Coke trucks.


and lighted Hess trucks.


Yes, this year it is all about the trucks.

Unfortunately for Dora, her familiarity with heavy equipment is somewhat poor, in fact it is probably non existent. Alas, as a result, Dora's long time allure is finally beginning to wane.

Nick just isn't feelin' it.

Enter the genius of the cartoon creators over at Nick Jr. and suddenly Nicholas has a new obsession. And this one my dear friends, just happens to be all about boys.....not that it matters to Nicholas.

Welcome to Paw Patrol.
 
It is as if these cartoon creators teamed up with those clever toy manufacturers and designed the perfect kid's show by using data they magically extracted from the inner most recesses of my young son's brain.
 
Paw Patrol is group of six puppy rescuers, Chase, a police dog, Marshall, a fire dog, Rocky, a recycler, Zuma, a water rescuer, Rubble, a construction dog and Skye, an aviator. They are led by a 10 year-old technically savvy boy named Ryder, who happens to ride a 4-wheeler. Each rescue pup wears a backpack and drives their corresponding (and very cool) vehicle.
 
Let's see puppies, backpacks and rescue vehicles......it is no wonder Nick can hardly breathe!
 
I am certain that merchandising played a huge role in the potential recuperative revenue of this genius programming. I will guarantee that Pete and I will become two of those poor parental saps who will willingly contribute to the excessive wealth of these creators. I predict we will spend a small fortune in videos, vehicles, backpacks and stuffed animals.
 
In fact, it has started already.
 
Nicholas asked me if he had a good day at school if we could buy a Paw Patrol video. Of course since this is a new show, no such thing exists just yet. The only available merchandise to date is cake decoration stencils and printed t-shirts. Nicholas asked me for the t-shirt.
 
We agreed that if he went an entire week with no poor behaviors at school, he could get the shirt.
 
It was his best week ever!
 
He waited patiently for the shirt to arrive. Every afternoon when we checked the mail, he would ask,
 
"Did it come, did it come yet Mom?"
  
And every day, I would say
 
"No, not yet,"
 
Wouldn't you know, the recent unusual weather woes across country have contributed to the delay in the delivery of this highly coveted treasure.
 
Finally, last Friday it arrived.
 
Nicholas was ecstatic but refused to wear his prized Paw Patrol purchase until he had school on Monday. Instead, he slept with the shirt on his pillow. He waited anxiously for school to start and his opportunity to share his new "boy" obsession with all his sixth grade friends.
 
It was a huge hit.
 
(was -1 this morning so he had to wear a jacket too)
 
Can you guess which pup is his favorite?
 
 
  Move over Dora, there's some new rescuers in town.
 
She sure had a good run
I do believe the ever faithful Nicholas will always hold a special place in his heart for Dora.

Sunday, February 9, 2014

A Shining Break from our Morning Madness

For a child diagnosed with ADHD, morning time is not exactly the best part of the day. It is when my son is at his energetic highest. It is almost as if his body is making up for its inability to release energy during sleep. When Weston awakens, his body becomes like a tempest of this repressed energy. He jumps, squirms, screams, smirks and pesters. He becomes like a lightening rod sucking in all forms of sensory input and blasting it out in an explosion of sight and sound.


After 14 years of adjusting to this boisterous morning routine, I have become very adept at minimizing the pain of it. Yes, I am a maximizer of time and efficiency. I have created a morning schedule that seeks to minimize sensory input, provide instant nourishment and feed/clothe a fast-moving boy all in about 20 minutes flat. The exact amount of time it takes for Weston's meds to become effective. At this point, Nicholas and I are strapped into the car and zooming off to the school in an effort to quickly deposit the feisty fire bolt at the bottom of the high school stairs. Mayhem managed.

Once in a great while however, the kind spirit that resides at Weston's core manages to subdue the impulsive beast called ADHD. Amidst the arms, legs, hooting and hollering, the true essence of Weston's soul will sometimes exert itself reminding me once again that my son is not his disability. In fact, at times he manages to shine brightly in spite of it.

Friday morning Weston arose from a sound sleep by bolting upwards from bed and bounding down the hallway steps, two at a time. He entered the kitchen amidst a cacophony of sound effects,

"Grrrrrrrr, woooooo, weeeeeee, waaaaaa!" the wild boy yells as he heads to the kitchen table.

Muffy immediately makes for her crate in a streak of brown and white fur, but not before the terrorizing teen shuts the metal door of the canine condo, squelching the hustling hound's only escape route.

"Weston please stop teasing the dog," I say for the one millionth time.

"Alright," Weston whines disappointingly and shoves his entire breakfast (a peanut butter sandwich) into his mouth.

"Mmmrrrrrmmmmwwwww," he mumbles at Nicholas and pokes him in the arm.

"Moooooooooom!" Nick shouts promptly sounding the "I'm having trouble tolerating my brother" alarm.

I assemble clothing, medication, headphones and deodorant and place it directly beside the teen tyrant, shortening our morning schedule by another minute.

Weston puts on his headphones and begins singing.

"We're not going to take it, no, we're not gonna take it, we're not going to take it anymore!"

In an effort to de-escalate the noise, I ignore Weston's singing and make a mental note to myself to encourage the lyrical lad to create a morning play list that does not include songs by bands with names like Twisted Sister.

"Hurry up Mom, we gotta leave," Weston shouts and pokes his brother once again.

"I can't take it," Nicholas screams as I grab my coat and head the dueling duo toward the garage door.

We climb quickly into the vehicle and speed off toward the school while I ponder once again the true meaning of the words, high maintenance.

We soon arrive at the school in our usual place at the bottom of the stairs.

"Bye Mom, Bye Nick," Weston shouts happily and leaps up the steps barely touching the concrete.

In front of my vehicle is a crosswalk. One of the cranky high school teachers is beginning to cross. In her arms is a large pile of heavy books. She leans to one side in an effort to straighten her leaning load of literature. She was Weston's 8th grade English teacher and not exactly one of his favorites. I look over at Weston. He has entered the doorway and I wonder for a moment, just what he will do.


I must admit, after his riotous antics of this morning, I half expect the boisterous boy to bound off into the school completely unaware of this poor woman's struggle. But he does not. Instead he stops. The impulsive boy is easily able to apply his brakes. He waits for the grouchy teacher to cross the street and walk up the stairs. He holds the door open widely for the crotchety crow and smiles at her brightly. The stern face breaks into a glowing grin as the typically cross teacher thanks the charming Weston for his chivalry.

I am speechless. Nicholas is also warmed by Weston's unusual display of morning kindness.

"Aww Mom, that was nice of Weston." he says and for just a moment Nicholas and I can see the heart of gold that is buried beneath that intolerable whirlwind of energy.

 It is as if Weston provides us with these little bursts of light, shining glimpses of the reality that is his soul and reminds us that despite his impulsiveness, his negativity, bad moods and anxiousness, he is still a lovable, kind and worthy human being.

We see you dear Weston.

We love you.

Friday, February 7, 2014

Have Shovel Will Travel

 

February is a snowy month for New England. It is not unusual for a stormy weather pattern to settle over us and spin off two or even three snow events in a single week.

We received a few inches of snow on Monday, a foot on Wednesday with a few more inches expected on Sunday.

When we do experience this kind of snowage, shoveling becomes synonymous with pain. The once magical properties of the fluffy white stuff have now morphed into back breaking work and a kind of thoughtless drudgery as folks head out for the hundredth time to shovel walkways and uncover buried vehicles.

Bad backs and bad attitudes begin to prevail as folks around here experience snow fatigue.

There is one individual however, who never tires of inclement weather. In fact, he seems to crave poor weather conditions and the opportunity it affords to burn off some excess energy.

As the first flakes begin to fall, Weston heads to our front step where he begins scratching and scrapping the concrete with his heavy aluminum shovel.

"Scrape, scrape......scraaaaaatch"

It is the only household chore that I do not need to remind him to do....ever.

The boys did not have school on Wednesday. Weston took full advantage of the snow day to man his usual post as Chief Walkway Cleaner.

 
 
"Scrape, scrape....scraaaaaatch"
 
He maintained snow removal excellence throughout the day but soon tired of his much-too-easy and all-too-familiar responsibility.
 
"Mom!" he shouted brightly, "I have an idea!"
 
"Would it be OK if I go around the neighborhood and ask if I can help people shovel out?"
 
Hmmm, I thought to myself, let's see, should I allow the eager boy to roam the neighbor in search of gainful employment or do I subdue his restless energy and force him inside where he will most likely spend much of the day terrorizing his younger brother?
 
The vision of a red-faced Nicholas screaming at the top of his lungs "Weeeston Stooooop!" is all I need to make the no-brainer decision.
 
"OK Weston, where are you going to go?"
 
He described his proposed route, grabbed his trusty shovel and headed out into the snow ravaged neighborhood.
 
Now, had this been December, I expect the eager shovelest may have had more difficulty, but since this is February, and we have all shoveled and plowed and scraped until our hands are calloused and our back's broken, I suspected he might do OK.
 
 
 Sure enough it isn't long before the front door bursts open with a blast of cold air and a whirlwind of  teenage enthusiasm.
 
"Mom!" shouts the energized entrepreneur, his face red, his hair wet with sweat.
 
"Look, I made thirty dollars!"
 
He hands me the wet crumpled bills and stares at them in disbelief as if the soggy, green currency might disappear if he looks away.
 
"It's real money," he says.
 
I suppress an urge to laugh at my perceived cluelessness.
 
"Wow, that's great Weston, who was the generous donor?"
 
"Well you kind of go down this way and around that way and up." he explains confidently using several animated hand gestures.
 
But my ability to speak Weston is somehow negatively effected by the storm and I have no idea where he has offered his services.
 
I struggle to maintain an emotionless expression, since extreme outrage can often accompany joyous outbursts in Weston, his emotional control center seeking to find its balance.
 
I try again delicately.
 
"Ohhhh, you mean the yellow house straight ahead on the right?"
 
"No Mom, he says with frustration. "It's down this way and around that way and up," he says again losing his patience.
 
"Ohhhh, that one," I answer still completely unaware where this kind soul resides.
 
"What did they look like?" I ask, hoping that perhaps his description of the snowbound resident may provide me with some kind of a clue to their identity.
 
"Well she's like the kid. She's been living in Asia and hasn't seen snow for 5 years."
 
"Five years in Asia, wow that's great," I say certain now that I would not know this person if I tripped over them.
 
"Yeah I helped her shovel out two of her cars. She asked me what I charged and I told her she could pay me whatever she thought was fair and she gave me thirty dollars!"
 
"Well we will need to thank her," I said,  "maybe when we drive by on our way to school."
 
"Yeah," Weston says and I am thankful that I will eventually learn the location of this good Samaritan.
 
Pete comes in from plowing and the eager Weston is happy to share his news.
 
"Dad, Dad, I got thirty bucks" he shouts.
 
"That's great, who gave it to you?" he asked.
 
"You know the house where you go down this way and around that way and up," he answered.
 
I raise my eyebrow and look at my husband wondering how he will respond to our joyous jobber.
 
"Ohhh that one," Pete says winking at me while keeping his expression completely emotionless.
 
He too, it appears has learned to speak Weston.
 
The successful shoveling shindig has been a good experience for our maturing young man and I am comforted that he may just find his way in this world after all.
 


Wednesday, February 5, 2014

Admiration

 

Shug: More than anything God love admiration.
Celie: You saying God is vain?
Shug: No, not vain, just wanting to share a good thing. I think it pisses God off when you walk by the colour purple in a field and don't notice it.
Celie: You saying it just wanna be loved like it say in the bible?
Shug: Yeah, Celie. Everything wanna be loved. Us sing and dance, and holla just wanting to be loved. Look at them trees. Notice how the trees do everything people do to get attention... except walk?

Quote courtesy of:  The Color Purple by Alice Walker

Frost on Weeping Willow in Idaho
Photo courtesy of Alberta and Amber (my dear PWS family)

Sunday, February 2, 2014

Man Trips

A few weeks ago, Pete and Weston headed into Boston for some "man time" together. They visited the Boston Convention Center where the headline attraction was the highly anticipated Auto Show.

Weston spent most of his time there drooling over Mustangs, Corvettes and his personal favorite, the Lamborghini.



This weekend it was Nick's turn. It was back to Boston again for Daddy as he accompanied his youngest son to the Seaport World Trade Center and the Discover the Dinosaurs Exhibition.

I somehow coerced Pete into taking my camera. I know, right?

He took some very good shots.

Their early arrival at the Center
When you have a child with sensory issues,
beating the crowd is critical to a positive expedition outcome.

 
Nick with his trusty backpack and headphones
 
 
Pete thought the exhibits were a little lame

 
But Nicholas the Explorer loved them

 
This is one of Nick's personal favorites

 
This, of course, is the other
Nick thought this photo was genius since it looked like Mr. Rex was about to eat him

 
Another good shot right?
 
Dad and Nick had a good time discovering the dinosaurs together.
 
And me? I was pleased just to have my camera arrive safely back home with the two of them.