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, June 29, 2015

Defeat

OK so I have gotten a little ahead of myself...

When last I left you, I was about to begin my battle with the greatest chess player who ever lived.

Remember him?
 
I was about to meet with our public school system to discuss Nick's placement for next year.
 
For reasons I am not allowed to discuss, for the last 3 years, Nick has been enrolled in a neighboring regional public school. Where I am happy to report, he thrived. He matured into a happy, healthy, well-adjusted student. He quickly learned to read and write, and developed meaningful friendships with an entire school community.
 
And so to assist me in battling the Bobby Fischer of IEP meetings, I sought the counsel of Nick's attorney/advocate.
 
Perhaps you remember her?
 
The meeting promised to be a good fight.
 
But let's face it, Bobby Fischer is a champion. I knew it was going to take more than a vicious dog to bring him down. Winning this battle was unlikely, even with the help of a snipping, snarling and surly sidekick.
 
I was prepared to take a beating.
 
What I was NOT prepared for was abandonment and betrayal.
 
By everyone, including my hired gun.
 
During the meeting I was scarcely allowed to speak, as the two attorneys, the two sped administrators and an entire room full of educators and specialists gathered to take me down. It was like an IEP lynch mob, assembled for one purpose and one purpose only, to subdue and silence the noncompliant parent.
 
  
Amidst the maliciousness and madness, there was one brave soldier willing to support me.
 
Ms Emily, Nick's sped teacher and faithful friend.
 
But alone in number, she was quickly overrun and unable to stop my bleeding.
 
I was disheartened and bloodied, tears streamed uncontrollably down my face, but true to my fighting spirit, I refused to surrender and expressed my anger and disappointment again and again. Until finally...
 
I was silenced completely
 
by the bark of my own advocate,
 
who explained rather viciously, that our additional year at Nick's current school was given "in exchange" for a return to his current school district. I argued that there was no formalized agreement and that this "exchange" was dependent upon this team developing a suitable setting for Nick, which included his need for a substantially separate environment and appropriate peers. None of which existed. 
 
But my pleas went unanswered as my advocate surged ahead to finalize Nick's plans for the fall.
 
The meeting ended abruptly.
 
The room was silent as teachers and specialists struggled to grasp what had happened.
  
One by one folks exited the conference room overwhelmed by emotion, some of them crying.
 
I sat stunned and speechless unable to comprehend the brutal beating I had endured.
 
Now alone in the conference room with the "devil's" advocate and sped director, I stood up from my chair, told them I would never, ever give up on Nicholas and abruptly left the conference room, slamming the door behind me.
 
I was in a terrible predicament.
 
I could not fire my backstabbing attorney since she was also in the midst of upcoming discussions to decide the precarious fate of my eldest son, Weston.
 
 
I had no options, I felt alone and defeated, like I had failed my son.
 
 
To be continued....

Sunday, June 28, 2015

And So the Adventure Begins...


I am at the mercy of the Universe
I have faith that I will find
excitement and adventure
in this new experience.
 
After a hard-fought and bloody battle
there was failure and self-doubt
support from a friend
a renewal of strength
and belief in the importance of my voice
There was courage to accept defeat
 bitter sweet goodbyes
and a hurtful silence
as Nick and I let go of our meaningful past.
 
We are guided in a new direction.
 
We find ourselves
on the precipice
of change.
 
 
About to leap
together as always
into the great unknown
 
I feel alive
and refreshed
hesitant yet exhilarated
eager to discover
what the future has in store for us.
 
 
Who will we meet?
How will we change?
What type of love will we discover?
What are the lessons we will learn?
 
I am ready to continue our journey together
 
 
I recall in previous posts
asking the Universe
for something new and exciting
 
 
I believe I got my wish.
 
 

Sunday, June 7, 2015

I'm A Dancin', Dancin' Machine

Our objective for Nicholas this school year has been to build independence and prepare him for middle school. An important end-of-the-year event to help develop self confidence and achieve autonomy for the children is the 6th grade dance.

For most of the kids, including Nicholas, this is their first real dance experience and an opportunity for them to express themselves without interference from parents or teachers.


The handsome Nicholas rose to the occasion wearing a new polo shirt and Daddy's favorite cologne.

But attending the dance was a little tricky for Nicholas since his bedtime is typically very early and the dance wasn't scheduled to begin until 7 pm.

Once again we relied on others to help us through.

There was Ms Emily, his teacher who helped Nick practice for the big event.

There was his best-buddy Alex, whose free-spirit and Weston-like energy helped him to willingly try this challenging new experience.

To prevent anxiety and sensory overload, he relied heavily on his faithful headphones and favorite stuffed animal, Spikey.

With all of these supports, I am happy to report that the dance was a smashing success.

He sang, he danced and he even managed to build up the courage to ask his favorite friend, Veronica to dance. She gladly accepted his invitation.

As for me, I hid in the conference room, where the good principal, Mr. G kept me company until Nick was ready to head home, about an hour later.

Please enjoy the very loud video below of the two dance maniacs. Notice if you will, how much fun Alex is having and the beautiful girls dancing with Nicholas.

video
 Video courtesy of the wonderful Ms. Emily

Monday, June 1, 2015

Who Wears the Pants?

It's official.

I am now the shortest member of the family.

In fact, the boys get a kick out of calling me the runt.

Thanks to the growth hormone and testosterone injections, Nicholas has finally had a growth spurt and is now 5'4" tall. Weston on the other hand has doubled up in inches and added some significant height in a very short amount of time. He is now 5'11" and gaining quickly on Dad.

The thing I loved most about my children being shorter was the ability for me to fit into their clothing. For years, t-shirts, sweat shirts and jeans were shared equally among the three of us. We shared a community wardrobe. Clothing was "one size fits all" so to speak.

So you can imagine my disappointment when Weston announced:

"Mom, I need new clothes! None of this stuff fits me any more."

"Yeah," Nicholas agreed, "Me either."

Reluctantly, I agreed. They were right. It was time for a little man shopping. So Pete, Weston and Nick decided to head over to the clothes store to stock up some new duds.

They came home with bags and bags full of very large men's clothing

"Look Mom," Weston said as he pulled out a pair of man-sized jeans. "I am wearing the same size as Daddy now."

"Yes, I guess I need to face the fact that you and Nicholas are both men now," I said disappointingly.

"Yeah," Pete added, "But you wanna know the greatest thing about all of this?"

"What?" I asked.

 "If I run out of clothing now I can just borrow Weston's!"