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, March 3, 2015

Ye of Little Faith

I have come to believe,
 
that as a parent of children diagnosed with special needs,
 
I have a choice.
 
I can choose to see this life as some form of punishment.
 
I can complain about how tiring and difficult it is
 
or,
 
I can choose to see this life as something special.
 
 
As an opportunity to meet, teach. learn, share and grow with others,
 
to let go of fear
 
to seize the moment
 
to live in the present
 
to love unconditionally
 
and unrestrained
 
to have faith in my heart that I am exactly where I am supposed to be,
 
learning,
 
 and doing exactly what I was meant to do,
 
for myself,
 
and others.
 
I have faith.
 
I believe.
 
 
I understand what is important.
 
I choose to see this as a special life.

Sunday, February 15, 2015

Ice Dam-Nation

The snow storms and blizzard conditions have been relentless here in the northeast.
Last night, we received another 20 inches of snow.
Tonight temperatures with wind chill will fall to 15 below.
Winds are howling.
We are approaching 80 inches of snow in the last 3 weeks.
That is an insane amount of snow in such a short amount of time.
And yes, there is more snow in the forecast.
This is an historic winter.
One like I have never experienced in my life.
We are very snow hardy here in New England,
but these extreme conditions
and relentless snow accumulations
 have become difficult
 and dangerous with many roof collapses reported. 
 
For those of you unfamiliar with the term ice dam, 
this, my friends, is one of epic proportions on our roof.
 
Ice dams are large blocks of frozen ice
 that prevent water from draining properly off the roof.
Melting snow turns to water on the roof and begins pooling,
unable to find a way off the top of the house,
 it ends up leaking into even the most well-built roofs.
Yes, we have water dripping into our living room.
We have hired a crew to remove snow from our roof on Tuesday
(that is....if we do not get any more snow)
 
Honestly, it looks like an Ice Age has descended upon us.
 
 
Weston and I have shoveled the snow off this deck at least 5 times.
There is now no place to put it.
 
 
The walkway is almost as tall as Pete (who is 6'1) 


Our backs hurt from shoveling,
We are tired and house-bound.
We are sun-deprived and snow-weary.
 
 
Can you see the swing set in this picture?
 
This scenario is an appropriate metaphor for our life as a special needs family.
We are trying to stay positive and resilient.
But honestly, we are praying for an end to this madness!
 
 

Saturday, February 14, 2015

Love

"What the head makes cloudy, the heart makes very clear."
 
 
Happy Valentines Day




Tuesday, February 10, 2015

Snowluge

I have added a new word to the dictionary.

Snowluge: \sno-luj \ 1:  an overflowing of the land by snow 2: a deluge of snow.


The Boston area has received over 60 inches of snow in the last 14 days. While we are hearty New Englanders and acclimated to heavy snow accumulations over the winter months; we are not used to getting this much snow....in just a few weeks.

Combine this with frigid temperatures, kids home from school for days on end and you have a pretty good idea how grouchy we all are getting around here.

Remember the plant Pete was trying to kill?


It is completely submerged under a mountain of snow.
 
 
The height of the plowed snow at the end of our driveway.

 
mountainous snow banks

 
buried mailboxes


hidden stop signs

Can you see this one?

 and this one?

  Even the trees look small
 
business are difficult to see behind walls of snow
 
 
Oncoming vehicles are even more difficult to see
The bad news is.......we have two more storms a comin' this week.
The good news is......my Christmas Cactus is starting to bloom
as it does every spring.
a sign of things to come?

 

Thursday, February 5, 2015

What Real Inclusion Looks Like

Every moment and
every event of every man's life on earth
 plants something in his soul.
-Thomas Merton

 
I believe in soul mates. Not the romantic, man-of-your-dreams kind of soul mate, but instead folks who come into your life for a reason. With these folks you share a strange feeling of familiarity and friendship, a connection that seems to defy time. There is a feeling of a united purpose, that this unity serves a greater good which will benefit something or someone greater than yourself.
 
You may recall the long battle I fought last year to allow Nicholas to spend another year at his current elementary school.

At this institution, is a unique group of educators, general  and special education teachers who believe they can make a difference in the world by creating a more effective form of inclusion.

Two years ago, they asked me to come speak to their students, to educate them on the specifics of Nick's disability. They asked me to teach their students how to relate better to Nicholas.

To read more about the success of these presentations click here and here.

This week Nicholas and his best buddy, Alex were asked to participate in the Sixth Grade Ancient Egypt Exhibition. Here, each student was asked to design and manufacture a symbol of ancient Egypt. Nicholas received a lot of help from sixth grade teachers and students in preparing his very cool-looking pyramid for the show. He was very excited.

Tuesday, parents were asked to visit the classrooms to observe the student projects. For most parents it was a time to view their child's handiwork. But for me it was something more.

I knew my son's project was not going to be an award winning creation. I was not visiting to evaluate his manual dexterity or his fine motor skill. I was not there to compare his design skills to others. In fact I am acutely aware of just where my son rates on the scale of mental and physical ability. No, unlike others, I was more interested in observing how Nicholas related to his classmates. Does he belong? Is he valued? What type of interaction takes place with "typical" students?

What I saw, moved me to tears.

These teachers allowed me to see the fertile seeds of compassion and tolerance they have instilled in their students. Take a look......

Mr. B modeling the "get close" communication technique to his students.
Notice the student's positions and body language as they happily converse with Nick.
 
This is Nick's principal, Mr. G
Nick enjoys his laid back energy
He likes to hang with this down-to-earth and comfortable leader. 

This is Mrs E
She was the initiator of this new kind of inclusion.
 
In the white sweater is Ms E, sped teacher to Nick and Alex
She has been instrumental in facilitating these events with regular ed teachers.
Here Alex, shows the pretty girls his pyramid (after checking with Ms E)
 
And last but not least another one of my favorite photos
Nick talking with "the girls"
 
My visit to Nick's classroom was a day I will never forget. There was discussion, respect and most importantly, interaction between Nicholas and his classmates. It was clear that Nick was valued as an important and worthy member of his class.
 
For me, it was a soul moment, a rare opportunity to see the goodness, the value, the understanding and perhaps most importantly, the love he brings to others. It also gave me hope for a new generation of children who do not fear special needs students but instead, embrace their unique gifts.
 
This is the kind of interaction that can occur when typical students are given the tools to relate to kids who communicate differently. This is what happens when the stigma and fear associated with "special needs" is removed. 
 
These children and these educators have given me hope for our future.
 

Tuesday, February 3, 2015

Every Team has a Journey

When Tom Brady stepped up to the podium to speak to the media after a spectacular Super Bowl Sunday performance, he said,

"...every team has a journey and a lot of people lost faith in us early, but we held strong, we held together, and it's a great feeling."

For the long time readers of my blog, you may remember my affection for this consistent and underrated quarterback. You may remember that I questioned why it was so difficult for others to "see" him. You may remember how much I admire his integrity, his good sportsmanship, his devotion to his teammates.


If not, click here, to read my post comparing Tom's invisibility and understated greatness to what it feels like to be a parent of a child diagnosed with special needs.

I am a Bostonian, so by default, an avid sports fan. I am a faithful follower of the Sox, the Celtics, the Bruins and of course, the New England Patriots. So when Malcolm Butler boldly intercepted the almost certain touchdown pass to steal Super Bowl victory and win the game for the Patriots, you can believe I jumped for joy, just like Tom.


In fact, once again I can relate to exactly how he feels.

And NOT because he added to his already impressive stats and earned:

Most completions thrown in a Super Bowl (37)
Most halftime completions in a Super Bowl (20)
Most career touchdown passes (13)
His 4th Super Bowl win
His 3rd Super Bowl MVP award

And NOT because he threw 37 completions, with 50 pass attempts, earned 328 passing yards and made 4 touchdowns

Nope.

What allowed Tom Brady to finally be "seen"...to achieve official public confirmation of his steadfast and superstar status was not by an effort he made himself but instead by the bold and brilliant effort of a little known team mate named Malcolm Butler. This humble and undrafted player came seemingly out of nowhere to intercept the final pass and win the most important game of Tom Brady's career.


Malcolm described that he had a vision of making a game-changing play.

What made Tom Brady finally achieve recognition,  his visibility, if you will, was not of his own efforts but the efforts of his team, the many humble and remarkable men, seemingly sent from above to offer divine-like assistance.

It seems ironic to me that many times  I describe my life as a "journey" where we are accompanied by many brave and humble souls sent from above to guide and support us. So perhaps I shouldn't be surprised to hear Tom say,

"It's been a long journey. It's just great to win."

 
Congratulations to Tom Brady and the entire New England Patriots team,
2015 Super Bowl Champs
You will always be champions to me

Once again I would like to dedicate this post to my father, who was without a doubt, one of the Patriots truest and most faithful fans who never got to see such a victory.

Another win for you Dad!

Tuesday, January 27, 2015

Snow Bands

I am happy to report....so far, we have power.

Hallelujah!

Thankfully, we did not receive the high winds that were predicted from this storm and that is a very good thing.

The snow however, is another story.

We have about 2 feet of snow right now and it is still snowing heavily. It is expected to continue throughout the day. I believe we may break a record in our area for total snow accumulation.

 
 
To continue on with my series: New England Meteorology Lessons 101,
I am going to discuss the meaning of the word, snow band.
Much like the phenomenon that occurs during a hurricane, nor'easters are swirling storms that contain bands of moisture.
 
 

See the heavily shaded blue areas on the map up by the Lowell area traveling down through Boston toward Providence? These are bands of heavy snow. Typically during a nor'easter they pass quickly through a town. This storm, however, is moving slowly, the band of blue has been stuck directly over us for several hours. Resulting in heavy snow accumulation, at least for us. Interestingly enough, a town that may be just 20 miles away (ie west of Lowell) is experiencing hardly any snowfall at all.
 
From a plowing and shoveling perspective, snow bands suck.
 
If it takes you 45 minutes to shovel your walkway, the area where you started shoveling now needs shoveling again. It becomes a no win situation. Thankfully it has been a very light fluffy snow, and fairly easy to move.
 Weston and I are taking turns with the shoveling chore.

Here are a few photos for you, These scenes will change quickly however, as we receive more snow throughout the day. I will provide more photos once the storm is over.
 


FYI...do you remember my post on "Plant Killer Pete"?
I am sorry to say....he's baaack.
I am puzzled by my husband's unique ability to kill off all of my most prized plant possessions.
I believe he has a sixth sense for it.
Do you see the shrub on the right?
Of course you don't, its covered under a wall of freshly plowed driveway snow...oy!
You may remember this poor shrubbery from my post about the Triffids?
 


We will see if it passes the Peters family test of die hard resiliency.

Monday, January 26, 2015

Ready

We spent most of the day preparing for the storm: batteries, flashlights, blankets, food, water, radios, cash and electronic devices. Gas for the cars, generator, chain saw and 4-wheeler. I covered our trees and shrubs and removed all of the snow from our back porch. Turned up the heat and fridge and filled the tub with water.

We are as ready as we will ever be. We are New Englanders and used to the drill.

The boys are excited. Schools have been closed for the next two days.

I am just hoping to keep our power for as long as possible.

The winds are expected to be at times, hurricane force...when you have high amounts of snow fall combined with such howling winds, you can expect to see a lot of photos in the next few days that are going to look alot like this.....



I will keep you all posted for as long as I can.

Sunday, January 25, 2015

Nor'easter Times Two

Mother Nature has been very kind to us this winter. We have had no major snow storms that dumped over a foot of snow. The kids have had zero snow days. It has been unusually quiet.

Well folks, all of that is about to change as Mother Nature is about to make up for lost time and unleash the full fury of her wrath.



If you are a long time reader of our blog, you may recall my previous explanations of a nor'easter and the powerful punch it packs as it pounds our northern coastal areas. These are intense snow storms that are able to bring a city to its knees, even one that is familiar with heavy snow removal.

Now let's talk about a blizzard.


A blizzard is like taking a nor'easter and combining it with a hurricane. To qualify for "blizzard" status a snow storm must be accompanied by at least 35 mile per hour winds sustained for 3 hours.



Holy shit, right?

Now, let's talk about an "Epic Blizzard". This is a storm that comes around once every 50 years. Snow totals are measured in feet, not inches....with winds gusts expected of up to 65 to 75 mph.

You may also recall from some of my previous posts, how we compare all of our whopper snow storms to the grand daddy of all time...."The Blizzard of 78" which brought the entire New England region to a stand still for over a week. Snowfall readings of 25 - 40 inches fell, wind gusts were reported up to 100 mph.


 



An epic blizzard is developing and will arrive in the New England area tomorrow night.

The current forecast calls for snowfall in the amount of 20 -30 inches with winds gusting 65 -75 mph.

Hold on to your hats folks, it's gonna be a beast of a storm.

We are performing the usual routines. I will keep you posted with info and photos, for as long as we have power.

If you live in this area....perhaps you are familiar with this guy....?