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, December 30, 2013

Trucks, Kitty Crates and the Overwhelming Favorite.....Fake Farts

Christmas arrived with Nicholas feeling relieved of his strep throat, thanks to our Christmas eve trek to the pediatrician for some good old antibiotics.

He awoke at 5:30am eager to venture into the living room to see if Santa had validated his good behavior by rewarding him with lots of presents. I think he was more interested however in learning the fate of his older brother since there was some serious concern that Weston's morning rambunctiousness would result in a noticeable decline in presents or at least a lump of coal in his stocking.

He was relieved to discover that Santa Claus was very forgiving this year of his persistently pestering older brother, who somehow managed to dodge an almost certain placement on the Naughty List.

This year for Nicholas it was all about the trucks.

His best buddy at school is Alex. Alex is a high energy boy with a fascination for big rigs. He is a miniature version of Weston and I am not surprised that Nicholas is attracted to his energy. Together they obsess about Coke trucks and tractor trailers with two smoke stacks. You may recall our many rides to school searching for these monstrous vehicles.

Jolly Old Saint Nicholas did not disappoint the budding young truck enthusiast.


Now in high school, Weston's Christmas list consisted mostly of video games and gadgetry, Noticeably absent from his list this year where these multi-wheeled beauties. He was relieved however that Nick's Dora obsession has been temporarily replaced, thanks to Alex, by a lust for heavy machinery. He unapologetically asked his younger brother if he could take a few laps around the living room with the big rigs.


Of course Nicholas was not entirely ready to abandon his dear friend Dora just yet. He asked for only one Dora-themed present this year. The non judgemental, ever tolerant Santa did not disappoint him.


Flash, the cat enjoyed the festivities until the noise level and wrapping paper began to rise to an intolerable level. He sought refuge in a quiet place and found the big rig garage Santa had so kindly provided.


Nicholas thought it was hysterical and named the garage....."the kitty crate"

 
Muffy spent the entire morning frantically searching for a place to bury her new bone. She could not understand why the carpet would not create an open hole when she scratched it. She finally gave up and hid the bone in her crate.
 
 
The boys were happy and well entertained.
Of course, I didn't forget the prerequisite for any proper "boy Christmas"


Once again the 99 cent fake flatulence maker was the overwhelming favorite.
 

Tuesday, December 24, 2013

Strepmas Eve

Like most folks, last week was very busy for us as we made our final preparations for Christmas.

Add to that out typical slew of specialist visits like:

A trip into Children's Boston to see Nick's neurologist

A visit to the ortho for a new back brace and afo's for Nicholas

An eye appointment and new glasses also for Nicholas

And lo and behold Weston developed strep throat.

I thought perhaps Nicholas would get lucky since we treated Weston very quickly with antibiotics. But unfortunately he woke up last night with a screaming sore throat.

So today, of course,  it was off to the doctor's office for a strep test.

Now, wouldn't you know......Nick's physician is located behind the largest shopping mall in our area.

I do most of my Christmas shopping on-line to avoid going anywhere near this mad man metropolis on Christmas eve day when last minute mania and the shopping hysterics begin to build.



The nurse on the phone suggested we leave an hour early for our appointment to allow for the insane amount of traffic they were experiencing. It was a good thing we did. We fought the endless line of exiting vehicles on the highway and inched our way slowly over to the medical building only to discover that brave little Nicholas does indeed have strep throat.

He spent most of the day sleeping on the couch.

He had just enough energy to finish writing his note to Santa.

He has left the Big Man the required cookies and milk and a carrot for Rudolph. Weston helped his little brother track Santa via the Internet, and he is finally ready for bed.


He is now getting his rest so tomorrow he is ready for the Big Day!
 
Yes, he still believes!

Merry Christmas to all and to all a good night!



We would like to thank all our readers for following along and supporting us throughout the year.
 
Thank You!

We wish you all a very Merry Christmas  
 
 

Saturday, December 21, 2013

The Pipes Project

Lately, Nicholas has been exploring the contents of the cabinet under the sink. While I wash dishes, he opens the cabinet and performs the necessary plumbing adjustments, using his imaginary tools and accessories.

"Watch out Mom, I need to get in here and fix the pipes," he says.

At first, I thought he was recreating a scene from something he has seen on television or read in a book. That is until our latest IEP meeting when Nick's teacher showed us this.


This is the sink that Nicholas designed and manufactured. Each student in the class was asked to choose a profession. Since Nick's daddy is a union member of Local Pipefitters 537, perhaps it is not surprising that Nicholas chose to work with his hands and create this perfectly piped masterpiece.

The project was designed to encourage the children to think about careers. It enabled them to use their imaginations and design and build something from scratch. Not to mention the cutting, wrapping, gluing and other fine motor skills that were employed in the building of this prototype.

Yes, that is his business card taped to the door of the sink.

The sink held rice, dyed blue to look like water, with plastic water droplets taped to the faucet. The left and right handles could move "on" and "off". The cabinets open and close.

 
The rest of Nick's IEP results were equally encouraging. Nicholas has progressed into the third grade reading level. He has made many new friends. Since my presentation to the class, several of the sixth grade students come to visit his classroom every day.

Thanks to our advocate, I can breathe easier knowing that Nicholas is in a school that seeks to include and educate.

Our pit bull, oops, I mean advocate is now in the process of accommodating Weston. This however, is taking more time. His school issues are much more difficult to address since his disability is somewhat invisible. He looks "normal" so to speak, so the educational expectations on him are higher. It is much more difficult for school's to "see" the true disabling nature of his learning issues and his difficulties finding suitable peers.

I, alone, have not been successful at initiating change. Our advocate however, seems to instill fear in some of these educators. They immediately employ strategies she suggests. She also seems to know where and what programs best suit Weston and his needs...it is a work in progress.. will let you know how we progress.

Sunday, December 15, 2013

Here Comes Santa Claus

With horn's blaring, lights flashing and sirens wailing, Santa Claus made his yearly trek today down snow-covered roads collecting toys from our residents for the local Toys for Tots program.

It is quite a holiday spectacle as Santa 's noisy parade makes its way down every street in our town.

Santa has tolerated all kinds of weather on his 7-8 hour altruistic journey, including one year that featured an unusual thunder and lightening storm.

This year it was snow and frigid temperatures.

What has become a yearly tradition, we met our neighbors, Emma, Liam, Jen and Bill at the street corner, and waited with much anticipation for the arrival of Old Saint Nick.




Nicholas, well prepared with his noise reducing headphones, was also very excited to visit with the our neighbor's dog, Lizzy dressed in her holiday best.

 
She is a cute and loving little animal whom Nicholas adores dearly

After a lengthy wait in the frigid cold, and a much welcomed sandwich snack provided by Jen, the faint sound of the high pitched sirens can be heard signaling the arrival of the local brigade.

 


Leading Santa's Squadron, like Rudolph with his red shiny light, is the large pumper truck and Nick's personal favorite.



Now, wouldn't you know as the golden hour finally arrives, and Santa is about to make his once-a-year appearance, my camera battery goes dead.......oy!

Thankfully, using her IPhone, Jen has recorded the rest of the parade and the kids giving Santa their toys. She kindly shares the file with me.

So........Here comes Santa Claus! Enjoy

(recorded by Jen...thank you dear neighbor)

You may need to open the video to "full screen" to view it.
 Click the picture frame button on bottom right of the video

video
 

 

It's Beginning...

...to look a lot like Christmas.



Overnight we received our first major snowstorm of the season. We got about a foot of snow, followed by some light freezing rain. The boys were very excited that we will have a white Christmas this year.



You may remember that Santa Claus tours our town every December before Christmas. He rides on the local fire trucks and collects toys for the local Toys for Tots program. Jolly Old Saint Nick's infamous ride through town has not been canceled, just slightly delayed because of the snow.

More pictures to follow!

Thursday, December 12, 2013

Cat - astrophe

OK so you remember the little kitty we adopted?

The cute, sweet, fluffy fellow we named Flash?

Well I am thinking we may have named him appropriately.

This once calm, quiet kitty......


 
 
 
had a growth spurt, and with his increase in size

 
is a noticeable increase in energy
 
Yes, our calm, quiet kitty has seemingly morphed overnight into a fast, frenzied feline, a speeding black bullet of high octane energy. I do not know if cats can acquire the wiggles but this fiery fluff ball sure gives Weston a good run for his money.
 
Our newly acquired Christmas tree has become his latest conquest of covert cat play.
 
I try to shoo him from the sanctuary of the sacred spruce but it isn't long before I hear the distinctive shatter of the latest ornamental victim of a Flash Attack 
 
Poor Nicholas is horrified to see the shattered bulbs scattered on the carpet. His once precious decorations now just sacrificial dust from a kitty-gone-wild rampage.
 
 
 
Yes, our latest addition has transformed quite suddenly into Sniper Cat, hiding behind furniture and pouncing on his prey usually focusing his scratch attack on unprotected arms and legs or the wagging tail of our unsuspecting dog, Muffy.
 
I guess much like a teenager, our little kitten is growing up. 
 
Our household is now on high alert, as we are held hostage by the antics of an all-out kitty rebellion.
 
And I thought teenage boys were bad!
 




Saturday, December 7, 2013

The Elevator Man and the Parking Valet

Once again our Thanksgiving vacation took us into the white mountains of New Hampshire for another stay at the Mount Washington Hotel.

Interestingly enough, this year both of my children decided to scope out future job opportunities and decided that this grand hotel might just be an ideal place to work. But more on that later.

Our journey began on the cold and rainy Wednesday before Thanksgiving. Pete took the day off (very unusual for him) so we got a head start on the holiday traffic.

 
As we got further north, it became very foggy

 
fog bank over a New Hampshire town

 
As we got further north, it became colder and the ground was covered with an inch or so of snow
 
 
You may remember our previous trip through Franconia Notch where the large granite mountains line the highway. This time it was too foggy to see much of it.
 
 
After a slow wet drive through the pass, we finally arrived at the hotel
 
 
where once again we marveled at the grandeur of this old hotel
 

 
 
After a long drive we were welcomed into the cozy, glowing warmth of the old lobby
 

It was adorned with a variety of Christmas trees in every corner

 
 


And of course a variety of roaring fireplaces for our fire enthusiast, Nicholas.
 
 
We checked into our room where Nicholas was thrilled beyond belief to find another one of these
 
 
A great photo of Pete lounging in the chair he claimed throughout our stay
 

But as usual, I had to take several photos of him behaving like this first......
 
 
The first thing the boys wanted to do was head to the pool
 
 
 
Weston spent much of our visit here
 
 
This year Nicholas and I also enjoyed the warm water
Since we arrived early, we had the pool mostly to ourselves
Thanksgiving day was a much different story!
 
 
The next day was Thanksgiving.
When we awoke, more snow had fallen.
This was the view out our window
 
 
Later in the day we dressed for photos before our Thanksgiving dinner
 
 
 
 
And headed to the dining room
 
 
Having learned our lesson with Weston's over stimulation last year,
we were accommodated with a table in the back
 
 
This time Weston remembered his ipod
It was a good thing, since once again the music in the dining room was very loud
 
 
There was lots to eat at the buffet
 
 
 



After dinner, Pete settled into his favorite chair
while me and the boys took a quick walk outside
 
 
It was crystal clear and freezing with temperatures about 13 degrees F!!
 
 
Brrrrrrrrrrrr



 
Our room was the two windows on the left just above the porch
We were on the first floor and unfortunately a large family with many children were placed in the room above us, sounding a lot like a heard of elephants.
 
Now, for some reason, I do not know why, both of my children decided to use this vacation as an opportunity to explore employment opportunities.
 
Nicholas was spell bound by this old-fashioned elevator.
 

It was operated by this kind man
 

 
He was a very warm hearted and jovial spirit.
He took an immediate liking to Nicholas and taught him how to move the lever handle to operate the lift.
Well that was it for Nicholas
He was hooked
 So perhaps not surprisingly,
he spent the rest of our vacation, here
 
In front of the closet in our room
 

 
Much like the elevator, the doors slid back and forth

 
Nicholas spent the rest of his visit, opening and closing these doors
pretending to be......
 
 
The kind-hearted elevator man.
 
 
The next morning we got up to leave
Once again it was a chilly 10 degrees as we headed to breakfast


 
We stuffed ourselves one last time before leaving
As we headed out of the hotel
Weston announced that he wanted to become a parking valet
 
 
The attendant is the guy on the left in the light green jacket
Weston asked me if perhaps the man would let him stay to help unload vehicles and park cars?
Especially since he was already wearing the prerequisite green colored jacket!
 
 
When you think about it, it is easy to understand how a physical job, outside, greeting people would be attractive to a boy diagnosed with the wiggles.
 

 I snapped a few last minute photos
The frigid temps made picture taking spectacular
 
 
We took one last look at the hotel before we left in our packed-to-the-hilt vehicle.
 
 
and drove our ice-covered car back through the mountain pass
 
 
where this time, Franconia Notch was encased in an icy coating of snow

 
 We returned home relaxed and happy with our belts fastened just a little bit looser.