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 15, 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, July 29, 2014

Outta Dodge

At last, we are on vacation.

I think "on vacation" are the two most relaxing words in the entire English language.

We arrived early to the White Mountains of New Hampshire, eager for our much needed respite to begin. Unfortunately, the cleaning crew had not finished preparing our rental home. So, in true Peter's problem-solving fashion, we found a nearby scenic rest area to visit on the banks of the Saco River.


We climbed onto a few rocks and splashed our toes in the cold, clear mountain water.


Did I mention the water was cold? Brrrrrrrrrrrr.........

Weston pulled out his fishing pole and cast a few lines, but the water was moving too swiftly.

We frolicked in the water for awhile and then searched the neighborhood to find the nearest ice cream stand. Is there anything more important to find while you're on vacation? We quickly found a perfect spot where my two teen transportation enthusiasts were thrilled to find this...

 
This big wheeler was more alluring to my children than the ice cream.

 
Even Nick's symptoms of PWS took a back seat to this formidable four by four.


I think if this vehicle were real, I probably wouldn't see my children for the rest of our vacation. Hmm perhaps that's not such a bad idea...huh?

Sunday, July 27, 2014

See Ya Later, Alli.......Gator

Nicholas has a babysitter named Susan.

She is very pretty. But more importantly to us, she is pretty on the inside.

Last week, she took him to one of his favorite places in the entire world, the park. Now while many children may admire the playground equipment or the large sandy beach area in this environment, Nicholas was more impressed with this:

 
This is a John Deere Gator
 
He nearly fainted when he saw this kindly gentleman surveying the welfare of the park grounds in this Cadillac-of-Lawn-Care vehicle.
 
Nick is easily influenced by his very cool elder sibling, Weston, who happens to be, without a doubt, a true aficionado of all things related to heavy equipment and transportation. He is also wholly responsible for Nick's latest obsession with John Deere farm equipment.
 
So, in an effort to please the Weston-Wanna-be, our brave, sitter Susan had no problem asking the accommodating grounds keeper if he wouldn't mind transporting the farm equipment fiend for a few laps around the park.
 
He gladly obliged.
 
And around and around they went.
  


Sunday, July 20, 2014

Return of the Triffids

When I was a kid, I liked to spend weekends at my grandmother's house. Once in a while, my cousin Lorie would come to hang out with me. Lorie was the cool cousin. You know, the one who always managed to take advantage of the clueless grandparent and convince you to sneak your first cigarette?

Anyway, it has been many, many years since those childhood sleepovers, but I still remember the night Lorie and I stayed up late to watch the 11 pm airing of:

The Day of the Triffids



Now, keep in mind, this movie was filmed in the 60's and was created way before anyone had ever heard of special effects or computer graphics. Even zombie movies had yet to make their gruesome appearance on the silver screen.

This was original horror movie making at its finest and I was scared to death.

The Day of the Triffids begins with a man sitting in a hospital bed with his eyes bandaged. He has had recent surgery to restore his eye sight. But the bandages must stay on for one more day. Unfortunately, this prevents him from watching a freak meteor shower that occurs overnight and captivates the awestruck public.

The man awakens the next morning but no one arrives to remove his bandages. He decides to do it himself and is happy to learn that his eyesight is fully restored. He soon discovers however, that all the folks who watched the meteor shower are now blind. This instant mass blindness of the public sends the world into a kind of crime-filled apocalyptic chaos.

To make matters worse, the meteor showers have caused some plants in a greenhouse to mutate. They become mobile and escape the hot house. They grow to an enormous size, are somewhat intelligent and begin a murderous rampage by whipping people with their poisonous sprouts so they can feed on rotting human flesh.


Picture blind, screaming citizens terrorized by invincible, gigantic carnivorous plant monsters and you get the idea.

Like the zombies of today, Triffids are indestructible. There are scenes in the movie where frightened survivors try to cut or burn them. One guy even tries to electrocute them. But alas, nothing works.

Triffids approaching an electric fence

Futile attempt at Triffid cremation

On-the-run characters become desperate to figure out a way to kill these leafy green giants. Finally the last survivors are chased into a lighthouse by the sea, where, in an last ditch effort to remove the advancing plants from a staircase, the humans spray the unsuspecting beastly botanicals with sea water. This briny solution dissolves the leafy letches and mankind is saved from a plant-led extinction.

It is horror movie genius.

To an over-imaginative eight-year-old, this depiction of a mob of murderous mutant plants roaming the earth searching for human flesh to eat takes its psychological toll and scars me for life.

I am terrified of Triffids.

Honestly, I do not know why the movie makers of today have not exploited this fearsome, foliating fiend. To me, hoards of parasitic poisonous plants are a much scarier image than ugly, unintelligent undeads bumbling about.

But anyway.....I digress.

You can imagine my surprise when yesterday I noticed that my favorite outdoor plant looked unusual. If you are a long time reader of our blog you may remember seeing some lovely springtime photos of this:


This is my variegated weigela.  Looks pretty right?

Well lately upon closer inspection, I noticed this.


A twisted berry-laden vine, disguised as a part of my plant, had weaved a labyrinth of poisonous tentacles throughout the branches of my helpless weigela, paralyzing the plant and slowly squeezing the life from its healthy frame. It was a deadly attack from an insidious intruder.

I have never seen such a parasitic and vicious attack from a such a harmless-looking green plant.

I was reminded of ........the Triffids.

Without thinking, I sprung immediately into action. I was furious that this Triffid-like weed viciously attacked my happy, little plant. My body moved at a furious pace as I cut and tore at the suffocating tentacles of this murderous marauder. Weston served as my henchman, fetching axes, saws and various other garden tools of mass destruction, until finally we had rid my plant of this suffocating beast.

Nicholas and I piled the dismembered appendages of the Triffid Wanna-be onto his wagon and deposited its hideous remains in the pile of grass shavings Pete hides in the woods.

And yes, I was tempted to give the burial pile a good solid spray of foaming sea water. But with no means of accessing such a large quantity of salt, I thought perhaps a good blast of cold water from our garden hose might just do the trick.

My lovely plant now looks like this, thinned and scraggly, weathered by the brutal attack..

I have given it a good watering and a healthy dose of Miracle Grow and am hopeful for its healthy return.

I can't help feeling that this entire Triffid ordeal is somehow very symbolic?

Was the universe preparing the unknowing eight-year-old to what was coming? Did my cousin Lorie instinctively know I needed some traumatic conditioning, some hardcore horror movie propaganda designed to instill a superhero spirit inside a young and impressionable mind ?

And was my overcharged weeding removal process a symbolic representation of my current battle with special needs parenting?

Think about it......

A monstrous suffocating Triffid weed tries to insidiously choke the life force from my unsuspecting sapling.

I respond with a ruthless and relentless attack of the deadly foe.

I receive steadfast assistance from my brave and motivated children.

We kill the beast and bury its putrid remains...purifying our surrounding environment.

We lovingly water and feed our wounded host, nursing it back to its splendorous self.

Mayhem managed.

I know what you're thinking.......I need some serious help....!

Whatever my delusional mind is spinning here I guess I would prefer to see this Return of the Triffids as a much needed catharsis, a crossroad toward a healthy new beginning for our family.

I know.....I really do need some help.


Saturday, July 19, 2014

Family Man

Last week, out of the blue, Nicholas announced to the family that he was going to have three children, Mok, Dora and Milly. None of us was surprised since Nick's warm heart and gentle nature would make him an exceptional parent. His selected nomenclature of his chosen offspring inspired of course, by his undying support of Nick Jr. television programming.

Today, however, upon further contemplation of this important responsibility, Nick announced that he changed his mind and would now have only one child.......Dora.

Yes folks, it appears that Nick's love for Dora is everlasting. And while the rambunctious rescue critters from Paw Patrol caught his eye for a brief interlude, the dark-haired beauty still, and always will be, his first and only true love.

I asked Nicholas why he changed his mind about having three children:

"Well," he explained, "I thought about it Mom and I think three babies would be too much work."

"Oh, that's very smart, " I said, and wondered if living with the high-energy Weston had influenced his decision-making process.

"Why did you pick Dora?" I asked.

"Because I thought she would be a quiet baby," he answered.

Now I am absolutely certain that it is indeed Weston, and his accompanying heightened noise level, who has inspired Nick to change his mind.

"I am going to adopt her," Nick adds.

"Where are you going to do that?" I ask.

"At the baby store," he answers confidently.

"Where is that located?" I ask.

"It's in our garage," he answers quickly.

Friday, July 18, 2014

Sleep Thinking

It was 2 am this morning when I bolted out of a sound sleep, my head swirling with thought. It felt as if my brain had sprung into overdrive becoming a kind of omnipotent, electrically-charged superpower. Single-handedly it solved a multitude of creative and complex problems. Albert Einstein himself would've been put to shame by the speed and depth of thought that filled my out-of-control unconsciousness.

 My brain actually hurt and I could swear I came up a solution for world peace.

Unfortunately, upon waking, I could not shut down this runaway brain train.

An over abundance of unimportant information began to overwhelm me. A mindless rampage of trivial thought ravaged my hurting head. I thought about Nick's endocrinologist, the porch furniture we need to retrieve from the basement and the status of my packing for our upcoming vacation.

But how do you stop your brain from thinking at two in the morning?

Deep breathing?

Nope, doesn't work.

A glass of water?

No.

An aspirin?

Nothing.

A good book perhaps?

Ennnnnt.

So I thought instead about why it is....that my brain is able to function so intently when I am so unaware? Since it seems to know so much more than I do, perhaps I need to stop thinking so much during the day and allow my brain to go on autopilot for awhile. I wonder what I might learn?

And as I was thinking about all that.....I fell asleep.

Sunday, July 13, 2014

Clean as a Whistle

The summer sun warms our bare arms as Nicholas and I walk down the quiet, country road. We gather our usual collection of tiny stones to drop down the sewer when Nick notices a perfect specimen. He runs over to the patient pebble, bends over to collect it and as he rises he lets out a long breath of empty air.

"Wssssssshhhhhh"

"Hey Mom," he says excitedly, "I whistled!"

He purses the flaccid muscles of his checks together and tries to create a steady stream of air to push through the too large hole he has formed with his lips. Once again the end result is the same and instead of a crisp whistling sound emanating from his happy face, out comes a loud, long rush of music-less air.

"Awwwww," he says disappointedly and tries again.

"Wssssshhhhhhh"

And suddenly it is as if a poisonous arrow has been sprung from the bow of an anonymous assailant; a deadly spear pierces my unsuspecting heart as I realize that the effect of low muscle tone has prohibited my 12-year-old son from performing this important childhood rite of passage.

As the mother of a child diagnosed with special needs, these are the moments that hurt most.

It is these indistinct moments in time when you are finally feeling successful at creating some childhood "normalcy" when something like this will happen, a kind of in-your-face reminder that debilitating disease will always be there to rob your child of simple pleasures.

I feel powerless and angry.

I resist the overwhelming thought that plagues me.

I have failed my son.

These sudden moments of realization feel like personal attacks.

Like I am the sole victim of a special delivery "fuck you" from the universe.....designed specifically to tear my fragile mother's heart to shreds.....again and again and again.

But my stubborn persona resists the urge to wallow in special needs parenting paranoia. Instead, I decide to succumb to the pain. I feel it, turning my head away from my son and allowing the hot tears to rush over my checks.

Nick continues to blow air from his mouth.

"Wsssssshhhhhh"

"Wssssshhhhhh"

He is not bitter or resentful.

He's having fun.

"Mom," he says, trying to re-engage me. "Look, I'm doing it!"

And although he is nowhere close to creating the perfect sound of a clean, clear whistle,

still he believes.

I stop my downward spiral into self pity and try to embrace Nick's catchy optimism.

Together we blow air through our mouths, creating some silly sounds.

"Phshhhrzzzt" Nick blows.

"What was that?" I ask and we both begin to laugh hysterically.

 
 
About Hypotonia:
Children diagnosed with Prader Willi Syndrome experience hypotonia or low muscle tone. This is a condition that causes muscles to lose their ability to contract properly, causing the muscle to become weakened and flaccid. It is not a condition related to muscle strength, so no amount of weight training or conditioning will cure it. Instead, hypotonia is a result of a deficient neuronal response from the brain caused by a malfunctioning nervous system. Many internal bodily functions rely on the proper functioning of our muscles. Things like breathing, eyesight, digestion and even heart rate are negatively effected by this weakness. 

Friday, July 11, 2014

Bloop, Bloop, Bloop

Life is good for the Peters family. We are enjoying the long, warm, sunny days and leisurely pace of the summer season. No one, however, appreciates this "slow motion" more than Nicholas.

In previous posts, I have often compared him to this fine fellow.


For it is truly the simple things that mean the most to Nick.

Backpacks, candles, fireplaces and garage door openers are just a few of his favorite pleasures.


To me, summer is a time to "hang" with Nick and be reminded once again to enjoy those small special little moments in life that often go unnoticed..

During the summer, Nick and I often walk "the loop" of our neighborhood. The loop is a small collection of country roads that start and finish at our driveway. We listen to the birds calling in the trees, we count the puffy white clouds and watch for neighbors who may be opening their garage.

Nick's greatest joy, however is when we drop pebbles into the sewers and listen for the corresponding "bloop" of the stone plunking into the water.
 
There are six sewers on our journey around the neighborhood so we need to be sure to find a good collection of small stones that will fit through the grate.
 
 We drink plenty of water

 
Bring along our trusty headphones.
 
 
And listen to the purest sound of a stone dropping into the water.
 
Bloop
Bloop
Bloop

Sunday, July 6, 2014

No More Secrets


Man is not what he thinks he is, he is what he hides.
Andre Malraut



I guess you could say, it is the dirty little secrets we hide behind closed doors that make us all human. We believe that if we hide our perceived imperfections and create a more perfect version of ourselves, we will be accepted by others. We can protect our fragile hearts from the excruciating pain of judgment, humiliation and societal scorn.

But when you are the parent of a child diagnosed with special needs you have no more secrets.

You cannot hide your child's differences.

Walkers, wheelchairs, and behavioral outbursts serve as disability trip wires alerting the world to our unwelcomed presence.

We are exposed and vulnerable, helpless victims held hostage by the unwanted stares, comments and criticism of an ignorant public.


When you are here to teach the world, you lose the power to be inconspicuous.

You no longer blend.

You become the spotlight.

How you choose to use that spotlight is entirely up to you.

Most days you diffuse the comments and stares with hardened tolerance and polite unresponsiveness.

There are those other days you meet it with anger,

sadness,

humiliation,

even retaliation.

But whatever emotion you chose...

You lose the ability to protect your heart.

I was reminded of this last week, at Nick's 6th grade graduation ceremony.

Pete and I arrive early to the school and enter the empty auditorium. We survey the rows of empty seats and chose two chairs next to the aisle way. As parents of a child diagnosed with Prader Willi Syndrome, we know a behavioral meltdown during this kind of event is highly probable. We need easy access to an open exit.

Large public events are difficult for Nicholas. His sensory sensitive body is quickly overwhelmed by loud noises and bright lights. He is unable to connect with someone speaking from across the room. He loses focus and the ability to sit still. But perhaps his greatest challenge is the heightened anxiety issues that accompany his repetitive thoughts about his inability to access food.

Pete and I are nervous, we know we are pushing it. But denial is a powerful drug for desperate parents.

Children and teachers begin to file slowly into the room.

Two of Nick's teachers spot us is the crowd. Sensing our nervousness they part from the group and approach us to calmly explain the plan for handing Nick his diploma. Their small act of kindness soothes our fear momentarily and we are comforted. But their noble effort to shield us from pain is quickly shattered as Nicholas enters the room.

"I WANT TO SIT WITH MOM AND DAD!" he screams and every head in the room turns to look at Nicholas.

His sped teacher, Mrs. T is holding his hand and although he is wearing his headphones to deaden the sound of a noisy room, he is already overwhelmed.

In an effort to soothe Nicholas, she walks him over to where we are sitting and asks him if he would like to sit with us. It is a brilliant idea since sometimes simple changes to the routine is all that is needed to prevent such a dramatic response.

It works. Nicholas is quieted and takes a seat next to me.

The room is filled to capacity as the ceremony begins. Several speakers take the stage and begin to call the names of students who have earned special award. I laugh to myself, knowing my child will not be one of them.

The list of names seems endless. Nicholas is hot and sweating and it isn't long before the loud applause and droning sound of nervous speakers begin to erode his patience.

"I CAN'T TAKE THIS ANYMORE!" he screeches.

The woman at the podium stops speaking. All eyes turn to us. My checks start to burn. It is as if our bodies are being targeted by a deadly, red laser beam emanating from the focused and scornful eyes of a room full of angry parents.

It is quiet as everyone waits to see what we will do.

Pete and I lead the crying Nicholas slowly toward the exit.

I feel a hot wave of resentment coming from the parents around me, angry that we have ruined their need of a perfect ceremony.  I focus my eyes on the floor knowing that I do not have the strength to control the rage I feel inside toward their overwhelming ignorance.

"NOOOOOOOOOOO. DON"T DO THIS TO ME." Nick screams.

Inside, my heart is saddened as I realize I have asked too much of my son. Selfishly, I have placed him in an environment he is not ready to handle. My need for normalcy and perfection has superseded his ability to endure such a show.

I pay for my selfishness.

Mrs. T leads us out of the auditorium, down the hallway and into the quiet confines of the motor room. Hanging from the ceiling is a large swing used to create proprioceptive input for the students who need it. It is the perfect instrument for calming Nick's outburst.

Pete places Nicholas on the swing and I begin to sing to him quietly.

"Row, row, row your boat, gently down the stream........."

Mrs. T heads up to the classroom and brings down his friend Alex who always manages to make Nick smile. Within a few minutes, Nicholas is quiet and comforted.

We head up to his classroom. Mrs. T sends a text to Nick's teacher Mr. P and asks if he could come to the classroom after the ceremony to present Nick his certificate.

It isn't long before the kind Mr. P arrives with a group of Nick's "typical" friends. They encircle his chair to officially present him with his diploma and a copy of his yearbook.

Nicholas smiles brightly. He feels happy connecting with this small group of special people. It is a quiet and intimate ceremony. Nicholas is surrounded by all of the people he loves most in the world creating a beautiful moment that is far more meaningful to all of us.

As we drive home from this eventful day, my husband and I reflect on the chaotic experience and begin to laugh.

"You know Lis," Pete says. "There was a moment during the ceremony when Nick was screaming bloody murder and all the parents were shooting us dirty looks. But there was one guy standing near the back by the door. He looked me in the eye as I passed by and smiled at me kindly. That simple gesture comforted me and let me know that there was at least one person in the room who felt compassion for us and appreciated our difficult life."

I do not know the identity of the kind man in the back.

I probably never will.


Photo by Disney
But I will tell you this.... he helped me to realize that as parents of a child diagnosed with Prader Willi Syndrome, our "secrets" may be exposed to the world. But what is less obvious, and perhaps more important is Nick's unique ability to remove the masks of those who choose to judge him. He is like a mirror, reflecting the energy of those who choose to judge him. He strips people of their personal secrets and shows me exactly where these folks reside on their own spiritual journey.

Most observers who gawk or comment are scared, fearful, frozen or obnoxiously curious, displaying the character and actions of a childlike spirit.

But sometimes....just sometimes we are fortunate enough to find the hidden few who are truly enlightened. Angel-like souls who travel among us here on earth. Faithful, strong spirits unafraid to show compassion or stand beside us on our journey to learn new ways of assisting our special child.

Once again, it is my beautiful son who teaches me that it is we who are disabled, crippled by our need to keep our secrets. We repress our burning desire to embrace our imperfection and celebrate the true essence of what makes us worthy and unique.

 and in the process become less human and able to love.

It is our secrets that prevent us from living.

I am tired of being afraid to live.

I am ready to embrace Nick's humanness and desire for no more secrets.


Monday, June 30, 2014

Riding in Cars with Boys

What is it about cars and boys?

Place any male child into a moving vehicle and their typically tight-clenched jaws become magically unhinged.

Every secret they keep, every question they ponder come spewing from their lips like the rapid fire of bullets sprayed incessantly from a machine gun.

Some of the best conversations I have ever had with Weston have occurred in the front seat of our vehicle. Whether we are traveling to or from school or headed to an appointment, it is here that Weston feels the most comfortable.

What is it about the cozy confines of the car that makes Weston want to spill his guts?

Is it simply the fact that we are moving?

Am I less distracted and more focused on listening?

Is it the lack of eye contact?

Or is it where we spend most of our time together?

Personally, I think there is some kind of magic energy, like the invisible force field that is said to envelope you when you sit beneath a pyramid. It is a power that boys seem to have trouble resisting, a kind of kiddie kryptonite designed specifically to make young males talk.

I do not understand why school principals or police interrogationists don't take better advantage of this unique and highly effective driving device that seems more potent in withdrawing information from the brains of boys than truth serum.

Today the power of the magic road riding device kicked-in on our way to the orthodontist.

It may indeed be summer, a time for relaxing and staying put for most individuals but for a busy mother with two children, chauffeuring duties seem to reach a crescendo at this time of year.

I make a right onto 133 and it begins:

"Mom, why are boys my age such punks?"

"What do you mean?" I ask.

"Well, they act silly in class, they swear all the time and talk about nothing but blow jobs and boobs."

I resist an urge to laugh out loud as I remember a similar quality about the boys in my own freshman class.

"I think that is a pretty typical behavior for ninth graders."

"How come the girls don't act like that?" he asks.

"Hmmm," I say, thinking about his rather astute observation.

"The girls are all so pretty now, wearing make-up and nice clothes. They seem to hate all the idiots in my class," he laments.

"Well, maybe the boys are starting to feel the effects of testosterone, making them go a little crazy by thinking a lot about sex." I say tentatively.

"Yep, that's pretty much all they want to do," he replies straightly. "But the girls....they don't. It's like they are so much more mature. Why is that Mom?"

"Well maybe they are feeling the effects of estrogen and preparing for the reality of caring for children." Honestly, I have no idea if this is true....but it is all I can come up with at the spur of the moment.

"Yeah.....I think so too....Gee Mom it kinda sucks having to be mature, being the only one who is taking care of things all the time while the boys all behave like monkeys?"

I am surprised at my son's ability to see a different perspective.

 Do you ever wish you were a guy?" he asks.

"Yes, Weston",  I laugh. "I think you have just pretty much summed up how it feels to be a mother."

Who would have thought that a journey to the dentist would prompt such a conversation....!

I wonder if sitting in the front seat of this truth-telling, thought-provoking driving device will do the same thing to husbands?


Saturday, June 28, 2014

I'll Be Back

 
I am back to blogging.....
 


After a brutal last few months.

Remember what I told you about the Year of the Horse?


In a "horse" year, everything moves fast.......if you're not holding on tightly to the reins, you run the risk of being "thrown".

For me, this year was all about my health...and for awhile there I was hanging on for dear life, praying I would not be flung from my faithful steed.

Unfortunately, I wasn't holding on too well because I looked something like this...


Or maybe this:



Either way, I seemed to find myself off balance and flying precariously through the air.

The latest update on my mystery illness suggests that my swollen lymph nodes are not caused by Lymphoma or Lupus but instead are a result of untreated Lyme Disease.

I feel like I am on an episode of Jeopardy....

"I'll take 'Diseases that Begin with the Letter L', for 200 Alex"



For those of you city folks, who may be unfamiliar with Lyme Disease, it is a bacterial infection that is transmitted to humans from the bite of a tick. Since we live in a heavily wooded area of Massachusetts, loaded with these carnivorous, creepy crawlers, this theory seems to hold the most weight.

Left untreated, Lyme Disease can cause a variety of debilitating symptoms: rash, fatigue, fever, chills, headache and swollen glands. If left untreated it can progress to joint, heart and neurological impairment. Nice, huh?

The bad news is......there is much discrepancy within the medical community on how exactly to treat this condition. Particularly if it is chronic. Long term antibiotics have been the preferred treatment in the past. However, current dogma from the medical industry criticizing the "overuse" of antibiotics has thwarted this particular treatment plan. Physicians succumbing to treating the disease in this manner have received harsh criticism and been labeled "quacks". Patients who still feel ill are labeled hypochondriacs, which is pretty much the medical community's way of saying...we have no f-ing idea how to successfully treat this condition.

It seems I have stumbled upon a disease that fits squarely into the category of "Lisa Train" illness...are you surprised?

Well don't be.

I met with a local Infectious Disease Specialist who....are you ready for this?....is not convinced that my swollen lymph nodes are a result of Lyme Disease, despite the fact that two rather in-depth blood tests confirm the diagnosis.

Since I did not have the classic rash and do not suffer from arthritis...he believes I am too healthy to be suffering from a chronic form of this condition. He believes the month long course of antibiotic treatment should be enough to clear up my issues.

The good news is the lymph node swelling has gone done....but not completely. So, I will be revisiting with my primary to discuss where we go from here. Oy.

As for Nicholas....he will be returning to his current school minus his SPED teacher who was not rehired. More on that later. He will have a new teacher who faces a very steep PWS learning curve. The good news is he will be paired again with his very good friend Alex and he will be back with his general ed 6th grade teachers who were amazing and made significant out-of-the-box contributions that helped Nicholas feel included into his class community (more on that later).

Weston is doing well. He finished up his school year with decent grades and no behavioral issues. He will be returning to the same school next year. Since he shares similar energy with the horse, I am not surprised he is breezing through the year.


Pete, who also possesses horse energy is doing well and working a ton since it is his busy season for HVAC. Both he and Weston seem to instinctively know how to handle a spirited ride.

I took the summer off from school services for both boys so we can have some precious down time for the family. I have tried to minimize our number of scheduled doctor appointments.

We have no home projects scheduled and are definitely taking a summer vacation. We are heading up to North Conway, New Hampshire.

Much to Nick's delight, the home we are renting has two of these....



and two of these......



which is all Nicholas EVER needs to be happy.