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.




Sunday, October 18, 2015

The Grease Monkey

OK, so enough about me and my complaining.
 I can only take so much of my "woe is me" mentality,
and then it's time to move on.
We have a lot to catch up on.

If you are a long time reader of our blog, 
perhaps you recall my son Weston's fascination with motorized vehicles.
 
 
In fact, when he was a small child,
we would forgo trips to the playground in favor of places like this.


He enjoys the sights, sounds and smell
of mud slinging tires
 and gas chugging engines

He loves vehicles so much,
that one Christmas,
Jolly Old Saint Nicholas brought him this
 miniature monster machine


and aided the dwarfed driver
 into becoming a master maneuverer,
capable of operating the battery-powered Jeepster
with the same finesse as a professional race car driver
 
 
Yup Richard Petty had nothing on him
 
 
He happily offered joy rides to his little brother and neighborhood friends
 negotiating hair pin turns or screeching halts
with amazing speed and agility
 
Yes, I guess it is safe to say that Weston knows a thing or two about vehicles.
 

 
Even now, the allure of anything shiny and metal and motorized is tough to resist
 
 
I have found more than a few of these vrooming vehicles
in the pants pocket of his favorite jeans
 or under the back seat of our family car.
 
But over the years, his tastes have changed.
Those faithful sturdy yellow construction contraptions
have been left well-behind
in favor of a more fast-moving kind of flashiness. 

 
 He is now an expert in the identification of
fabulous foreign cars whose names end with the letter "i"
 
You can read more about his new obsession here.
 
Where is all this leading you ask?
Well dear readers, I am happy to report that the time has come
 for Weston to begin transitioning into the real world.
 
You may recall I had Nick's pit bull
(his advocate/attorney)
 
 
working on finding an appropriate technical school for Weston.
One that would recognize his disability
and provide the appropriate supports for him.
 
We were able to find one last year in the neighboring town
 but much like our progress with Nicholas,
our ferocious pit bull turned into a pussycat
and was unsuccessful at negotiating this transition.
 
Seems the only one she had any luck bullying after all,
was me.
So, I fired her.
 
And negotiated (on my own)
several new school programs for Weston.
 
The first was transportation to and from school with Nicholas.
Thus freeing me up to handle my increased responsibilities caring for Mom.
Both boys are happy to be sharing the ride.
 
  
The second program was designing a work/study arrangement for Weston.
Where the first half of his day would be devoted to school work,
the next half working with a job coach
 to secure employment opportunities for him in town.
 
What is his first job you ask?
 
 
Perhaps not surprisingly, he has become a grease monkey.
 
He will be working at the local garage changing oil and transmission fluids.
 
Pretty cool, right?
 
This weekend we bought him the prerequisite blue Dickies and some steel-toed boots.
 
 
For a young adult diagnosed with ADHD,
 job success is directly proportional to personal enjoyment.
In other words, like his father,
Weston needs to love what he is doing.
If not,
you can forget about his ability to focus,
pay attention and successfully complete his tasks.
 
The job coach at the school worked with Weston
to identify his passions
and design a resume, 
geared toward companies where he would enjoy working
Together they set up interviews.
and found this new opportunity.
 
 
We are hoping this experience
will help him to relate to others in a professional setting
and to find fulfillment
in the idea of working at what you love for a living.
 
 
I am very proud of Weston
and will keep y'all posted on his progress.
 

Sunday, October 4, 2015

Like a Seagull in a Storm

I believe when you ask spirit for an answer...you get one.

Only problem is, the answer comes in symbols, not in words

and that can make things difficult.

I think there is a reason for this.

I think if we had a telephone line connected directly to God and asked him on occasion, OK what the heck is this all about? What is my lesson? And how on earth I am supposed to handle this un-survivable hardship?

How much do you think we would listen?

Or perhaps more importantly, how much do you think we would learn?

Like a good parent would do for their child, I believe spirit asks us to find our own answers.

And when we do...they are a whole lot more meaningful.

But also like a good parent, I believe that spirit provides us with guidance, in the form of symbolic hints.

The only way to receive these important hints is to listen.

Not with your ears but with all of your senses, with your inner spirit, so to speak....your soul. To do this, you must be present, living in the moment, observing and interacting kindly with all that is around you.

I believe that Mother Nature holds many of these answers.

I believe animals/fish/birds/insects are naturally more in sync with spirit. Their ability to connect is instinctual, probably because they don't tend to over think. Sometimes it is our brains that do us the most harm.

I am going to share my story with the hope that it will help others who may be suffering.

As many of you know, three years ago Nicholas was transferred to a new school. My responsibility was to drive him back and forth to school every day. In an effort to calm my anxiousness about this new adventure, I envisioned a guardian angel sitting protectively on the roof of our vehicle, guiding and protecting us on our travels to school each day.

I believe this vision may have indeed saved our lives during an extremely close call involving an unsecured ladder on the vehicle in front of us.......but that is a story for another day.

Anyway.....the vision of the angel looked something like this....a strong masculine energy in a protective posture sitting on our rooftop, spreading his large white wings ensuring that no one was going to mess with us. I felt comforted by this vision.


So lately, I find myself in an entirely new and difficult life situation.

Once again, I am struggling and afraid, unsure of my ability to push forward through hardship in a positive and healthful manner, questioning my strength and ability to persevere. I have begun to feel like a victim of my life.

The reason for my struggle is a newly added responsibility. I have recently assumed the helm of caring for my mother. She has been battling the effects of dementia for many years. Her health, home and finances are in a state of crisis.

With all that I have on my plate, I questioned my ability to handle this new responsibility. I believe however, that if I do not accept this life-changing challenge, my mother will die.

I became so overwhelmed by this thought that I believe I experienced my first panic attack, suffering symptoms that felt alarmingly similar to those of a heart attack.

I questioned God asking "why" once again.

I begged him for strength (this time on my knees) asking what do I need to learn?

This week, I believe I got my answer.

Nicholas and I had an appointment at Children's Hospital. (Just for the record, I believe this is a very holy place)

Anyway, we finished up our appointment with one of our favorite providers (a true healer). As we left the building and approached our vehicle, this is what we saw.


A seagull, perched protectively on the roof of our vehicle, in the same stance as my vision of the guardian angel.

I do not believe in coincidence.

I do believe that we experience the things we are meant to experience, exactly when we are meant to experience them. That there are helpful life lessons buried deep inside these important moments.

I knew immediately that this "symbol" was an important one.

Someone was trying to tell me something.

The white-winged bird on my roof, is without a doubt, validation that spiritual help is indeed present.

That part is pretty easy to figure out....a kind of an "in-your-face" affirmation.

The rest is a little more abstract, but here's what I believe,

When you think about it, one of the best words to describe a seagull is resilient.

They are resilient...not in a "victim" sense of the word, but instead in a playfully invincible kind of a way.

They face great difficulty, easily....because they go with the flow.

They don't fight the laws of nature they ride them.


Perhaps you have seen the way seagulls, play with the wind. They bend their wings and allow the strong current to hold them motionless in flight......playing effortlessly with gale force winds, having fun with their unique design to survive.


But they are also pretty "bad ass" creatures, 
 They are leaders
leaders who do not look like leaders,
They are not decked out in fine clothing,
or sit on a royal throne.
In fact, you may overlook them at first.
But leaders they are,
strong beings who possess a confident inner spirit,
 a self assurance that rivals
 the royalty of a lion or 
the sleekness of a hawk
.
 
In fact, nobody messes with them.
 If I had to choose the victor in a fight between a lion
(or another large beast)
 and a seagull,
I would choose the seagull.

 
They ride the waves

 
And weather the storm
with a carefree invincible sense
 of comfort and ease
 
 
They boldly and unapologetically
do what they know is best,
unabashedly unaffected
by others

 
Letting go immediately
of the things that are not inherently useful
 
 
They have a strong voice
 
 
and know how to use it
to subdue uncooperative others
 
 
They hang out or flock with those of similar energy
 
 
They're silly and goofy
but surprisingly chic
 
 
They are resilient
soaring over air, land and sea
 
They believe
 
They live for the moment and seize the "now" of the day.
 
I believe my message from spirit is to playfully ride out the storm.
 
To stop preparing to fight and instead accept things gracefully.
 
To relax and enjoy the ride.
 
To have confidence in myself and my unique ability to survive.
 
To find the strength of my voice
 
And not be afraid to use it to subdue selfish others who do not support the greater good. 
 
To let go
 
To immediately discard the things that inhibit.
 
To embrace those with similar energy
 
To trust that this is exactly where I am supposed to be. 
 
To have faith that there is always a powerful spiritual presence accompanying me.