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.




Friday, September 30, 2011

Pete's Humbling Day at Perkins School for the Blind

My husband  Pete, is a big, tall scary-looking guy, who looks alot like Vin Diesel. He works for a commercial HVAC company in Boston. One of their biggest accounts is Perkins School for the Blind.


For those of you unfamiliar with this school, it is, in a word...miraculous. The school devotes itself entirely to the education and welfare of children who face a variety of disabilities. Families come from around the world to provide their children with the best learning environment possible. The school offers its students, the best in education and therapy services.


Visiting Perkins School for the Blind can be a humbling experience since there are many children enrolled in the school who face some very debilitating injuries and illnesses.

Pete has been assigned to this account. He is responsible for servicing all of their heating, venting and air conditioning equipment. He takes his job here very seriously and prides himself in making sure the children are always comfortable. I always know when he has spent the day working at Perkins since he is often quiet and subdued. Today, I found out why.

Weston and I were in the kitchen when Pete came home from work. He sat down at the counter. He was quiet and sad. Weston asked him what was wrong. My husband is somewhat of an introvert and not always willing to share all the details of his day. But today was different. Today he needed to talk.

He explained that he was in his van traveling to one of the Perkins buildings. Pete is always cautious driving through the campus since there are many students who cannot hear an approaching vehicle. As he traveled, he came to a crosswalk where he saw a little boy walking with his aide. He stopped to let them cross. The aide motioned Pete to continue on as she whispered into the boys ear. As Pete passed the boy and his aide, he was able to see the little boy. He had no face. In the place of eyes, nose and mouth was a scar in the shape of a star.

My husband explained that he had to pull into a parking lot, he could not stop crying.

"I do not know what happened, Lis, I just started to cry and couldn't stop."

Weston was shocked by his Dad's admission since Weston has not seen his father cry very often.

"Dad," he said, "that makes me sad too." And Weston also started to cry.

As Pete shared his story I begin to realize that my husband and I have dealt with our own children's diagnoses in very different ways. I immerse myself into research, blogging, writing and talking to others. He deals with it, more internally, always thinking about it and guarding his emotions, protecting his fragile heart so he can be strong for the family.

I believe it is his work at Perkins that helps him to deal with our own children's fates. It forces him, in a way, to see disability, to face it head-on in dramatic ways. But it also allows him to perform physical work, work that makes him feel better. I think the work he performs at Perkins, helps him to feel less helpless. It helps him to feel inspired and empowered to assist these children in any way that he is able.

He reviews every piece of equipment, he ensures everything is working perfectly. His thoughts are always on the health and safety of the children. Many times he will come home and tell us of the children he has met. Sometimes the stories are funny, and sometimes, like today they are very sad. But always he comes home feeling like he has made a difference in the lives of many children.

I am very proud of my husband for the compassion he feels for the children enrolled at Perkins. I am proud of the hard work he does each day to ensure they are aways comfortable. I am proud of him for facings and finally releasing some of his own emotions.

If Pete had his way, he would work at Perkins, every day.

For more information about Perkins School for the Blind visit here.