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.




Thursday, January 8, 2015

The Man I Almost Am


Weston is changing in some very noticeable ways. His voice is deeper and he has grown about four inches in two months. Gone are the delicate features of his face, replaced now with a strong jaw line and man-like qualities.

He is no longer willing to pose for pictures; so when a window of opportunity arises, I pounce. I am trying to respect his strongly expressed need for teenage personal space.

Last month, I participated in his IEP meeting.

As usual, our pit bull/advocate did not spare me from the blunt force trauma of his true reality.

Why am I never ready for this?

She stated that he may not graduate with an "official" diploma.

Deep breath.......yes, that's right, no diploma.

Mostly because she believes it is highly unlikely he will pass the MCAS exam.

She explained however, that there is some good news to all of this.

His current school will be responsible for funding technical school opportunities after graduation. He will also qualify for state services for job placement assistance.

She suggested that Pete and I seek conservatorship for overseeing his finances when he reaches 18. She explained that he does not possess the emotional maturity to manage this task and is highly vulnerable to those who may wish to exploit him.

Tough, but important news to digest as a parent.

I have no doubt that Weston will find his way in this world, that he will be successful and independent.

But as a responsible parent I need to ensure that he possesses the skill to do it safely and in a time and manner that is appropriate for him. No matter what his peers are capable of doing.

For Weston, it's all about having that extra time, to be "the man I almost am."

I need to find the strength to give it to him.