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.




Wednesday, September 17, 2014

A Good Decision and Another 6th Grade Presentation

I have learned that special needs parenting is all about making decisions.

Big decisions.

Not the "what am I going to wear today" kind of decision, but the kind of decision that can make the difference in the very quality of my son's life.

My ability to carefully consider options, weigh the good and the bad and make sound choices has a direct impact on the quality of my son's health and overall happiness.



Should I start my 4-month-old infant on growth hormone therapy, giving him nightly injections for the rest of his life?

Should I give him the 12 hour operation to correct his curved spine?

Should I have him participate in his graduation ceremony?

Should I keep him at the public school or send him to another?

Often, I am not entirely sure whether my decisions are good ones. Have I made his life better or worse?

But sometimes, just sometimes, I get it right.

And when I do......you can believe I am happy. Nicholas will start to shine, his happiness radiating brilliantly from his angelic face. The happiness I feel, seeing his peace; is one I can not describe.


I am happy to report that this year, I got it right.

If you are a long time reader of our blog, you may recall a few years ago when we moved Nicholas to a new public school. Here, he quickly learned to read. He was surrounded by some very unique educators. Brave, caring folks who were willing to go that extra mile to enable Nicholas to become wholly included in the public school environment.

You may recall these kind teachers asking me to speak to their students. Would I educate them on what it is like living with Prader Willi Syndrome? (Click here to read)

As a result of this special partnership and silent solidarity between parent, teachers and students, Nicholas thrived and from an inclusion standpoint, had one of the best school years of his life.

Mr. P's Homeroom Class

I believe that most special needs parents would agree that although academics is an important aspect of the school day for their child, what is MOST important to a child diagnosed with special needs is the feeling that they are an important member of their school community. That they are valued and included in what is going on around them. That they make lasting and quality friendships.

Achieving this is difficult however, and requires trust, respect, communication and the freedom of out-of-the-box thinking between parent and teachers. Strong bonds and a deeper relationship must occur between these on-board individuals.

Nicholas was very fortunate to find this last year, so much so, that I wondered if perhaps I should keep him another year in this same environment with these special educators?

I agonized over this decision but finally decided to make it happen.

Of course, as is the case with all things related to special needs parenting, I had to FIGHT. I had to dance and sing and slay.....doing everything in my power to convince administrators and Nick's IEP team that this choice was the right choice, the only choice for Nicholas.

After a hard fought battle and several unforeseen obstacles thrown unexpectedly in our way, it was finally decided that Nick would stay another year.

Hallelujah.

I celebrated.

Over the summer, however, the doubt that plagues every decision every special needs parent will ever make returned and I asked myself if I had made the right choice?

The world, however, quickly answered, squelching this doubt and extinguishing my anxiety.

Before school even started these unique educators met with me to discuss the inclusion plan for Nick. They were excited and animated, ready and willing to do anything to make Nick's year a successful one. They were eager to come up with new and exciting ideas for educating their incoming students on the importance of inclusion.

Immediately I knew..........I had made the right decision.

Last week, these teachers asked me once again to come in to speak with Nick's new sixth grade class.

I agreed whole-heartedly.

This time however, the children had been prepped. The now Prader Willi literate teachers had prepared their students, asking them to see with their hearts, guiding them to try to understand that despite Nick's differences, he is a student like any other.

It was arranged that Nick and I would speak on Tuesday.

The nervous knots and sweaty palms plagued me once again, reminding me of the humiliation and pain of high school speech class, my brain whirled out of control.

Would these students be as welcoming as the last?

Would they get bored and fidget?

Would they be mature enough to understand Nick's hardships?

But as I spoke, my fears were quieted. The bright, young faces stared directly at me. Their heads never turned. There was no fidgeting, no squirming, no looking out the window. These young children wanted to learn more. There were several who smiled at me. They were engaged and interested.

This time, Nicholas took a much more active role in talking to his fellow classmates. He jumped up several times and pointed to the screen, telling the children of his love for fireplaces and how this is the fire pit we used at the vacation house.

When Nick and I had finished speaking, hands flew up into the air. The children wanted to know more, only this time, they did not want to know more about PWS, they wanted to know more about Nick, asking:

"What's Nick's favorite color?"
or

"How many pets do you have?"

"What's Nick's favorite song?"

The questions were personal. And suddenly I realized that they could already see Nicholas. Not as a child with a scary disability, but instead as an interesting classmate, someone worthy of getting to know. These teachers had done their homework.

I know that Nicholas and I are very fortunate. That this type of magic does not occur often. That we have achieved a kind of classroom nirvana, a place where Nicholas is heartily welcomed and easily included into this special community. That these special educators are one-in-a-million...or probably even two.

How on earth do I thank them for this? How do you thank anyone for their humanness?

But there is one thing I can do.......I am going to enjoy every minute of this "once in a lifetime" year knowing that Nick and I are fortunate to be included in such a special community.

By far, this is one of the BEST decisions I have EVER made.


 Mrs. E, one of Nick's special teachers