Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, 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, January 31, 2012

You Down with OPP?


Many of you may be familiar with this popular rap song.

But for those of us living in the world of special needs, OPP does not reference "other person's privates".

More appropriately, it is an acronym for "Over Professionalized Person"!

And we are down with it.

Let me explain,

My son Nicholas has been evaluated by professionals, lots and lots of professionals.

Nicholas had been diagnosed with many "issues" related to his Prader Willi Syndrome. And for each "issue" it seems like there is no shortage of professionals to treat it. We have found many experts who are all eager to help, in most cases, at the cost of well over $100 per hour. Many of these specialists are not covered by insurance. We have seen advocates, attorneys, psychologists and psychiatrists, neurologists, endocrinologists, OT/PT therapists, geneticists, developmental pediatricians and behavior specialists. All there to help, all with a different opinion for Nicholas and his treatment options.

I have discovered that one of my most important jobs in caring for Nicholas, is to balance this schedule. To find the right professionals, only the ones who are needed most to ensure his healthy life. I must resist the temptation (by myself or the school) to add yet another professional to our long, growing list of specialists.

As a parent of a child diagnosed with Prader Willi Syndrome it is my job to ensure my son does not become an Over Professionalized Person. That his life does not become solely a routine of endless appointments.

But this is not so easy.

Nicholas's IEP is scheduled for February.

In the last few months, Nicholas has experienced regression. He is stuttering and struggling with speech fluency. He has lost sight words and struggles to read and write. His anxiety is escalating. He is having behavioral outbursts at school when transitioning to art, music, computers, library and morning meetings.

So, what is causing all this?

In an effort to prepare for his IEP and answer this important question, Nicholas has been evaluated by (you guessed it) more professionals!

But this is a very critical time for Nicholas. This meeting will determine what we need to do to provide the right educational environment for him. This meeting will determine his future. It is important.

I am anxious to find the right professionals to help.

I am ready to fight for my son.

But when this is all over.........no more professionals.......at least for a while!

I am down with OPP!