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.

Saturday, December 21, 2013

The Pipes Project

Lately, Nicholas has been exploring the contents of the cabinet under the sink. While I wash dishes, he opens the cabinet and performs the necessary plumbing adjustments, using his imaginary tools and accessories.

"Watch out Mom, I need to get in here and fix the pipes," he says.

At first, I thought he was recreating a scene from something he has seen on television or read in a book. That is until our latest IEP meeting when Nick's teacher showed us this.

This is the sink that Nicholas designed and manufactured. Each student in the class was asked to choose a profession. Since Nick's daddy is a union member of Local Pipefitters 537, perhaps it is not surprising that Nicholas chose to work with his hands and create this perfectly piped masterpiece.

The project was designed to encourage the children to think about careers. It enabled them to use their imaginations and design and build something from scratch. Not to mention the cutting, wrapping, gluing and other fine motor skills that were employed in the building of this prototype.

Yes, that is his business card taped to the door of the sink.

The sink held rice, dyed blue to look like water, with plastic water droplets taped to the faucet. The left and right handles could move "on" and "off". The cabinets open and close.

The rest of Nick's IEP results were equally encouraging. Nicholas has progressed into the third grade reading level. He has made many new friends. Since my presentation to the class, several of the sixth grade students come to visit his classroom every day.

Thanks to our advocate, I can breathe easier knowing that Nicholas is in a school that seeks to include and educate.

Our pit bull, oops, I mean advocate is now in the process of accommodating Weston. This however, is taking more time. His school issues are much more difficult to address since his disability is somewhat invisible. He looks "normal" so to speak, so the educational expectations on him are higher. It is much more difficult for school's to "see" the true disabling nature of his learning issues and his difficulties finding suitable peers.

I, alone, have not been successful at initiating change. Our advocate however, seems to instill fear in some of these educators. They immediately employ strategies she suggests. She also seems to know where and what programs best suit Weston and his needs...it is a work in progress.. will let you know how we progress.