Tales from the world of having a handicapped child

My youngest son, who I will call Robert here, has a extremely rare genetic disorder. As a result of it he is moderately mentally handicapped, mildly autistic and has mild cerebral palsy.

It has been a learning curve for us. But, he brings more joy into our lives than I could ever imagine.

My father sent this to me when Robert was about 5 years ago. I've never quite known to be flattered or not, because my Dad said it sounded just like me.

http://www.downsyn.com/bombeck.php

We have found that we have to look for silver linings, no matter how small. We have also developed a very quirky sense of humor, so I hope none of these stories offend.

One of the silver linings we found was that we saved beaucoup money at the penny arcades. Robert just saw the bright flashing lights and thought he was playing, even though we never put any money in the machine.

Robert has a hair fetish. He LOVES playing with people's hair. It's rather disconerting to be woken at 2:00am to find your hair being twirled by a shadow standing at the side of the bed. Robert had a friend who also had a hair fetish. We found at their older brother's baseball games and basketball games if we sat them next to one another they were happy as clams, arms crossed playing with each others hair.

We finally broke him of doing it to strangers when he decided to play with a 15 year old boy's hair who was sitting in front of him at a game. The boy was not amused. My older son's fiance knew she was FINALLY accepted into his world and he had gotten past his jealousy of her when he went up to her and stroked her head and said "A boo" (I finally figured out he's saying "I love you" when he says "a boo").

And then puberty hit. I was finding that boy naked all over the house. I sat him down and told him that yes, that felt very good and there was nothing wrong with it. But I told him that it needed to be done in the privacy of his own room. I told him I would start knocking on his door before entering, and that if he was "busy" he just needed to tell me him he needed some privacy.

Several times a day for the next few months he'd yell through the house "MOM! I'm going to my room, I need some PRIVACY". Too much information!!!!!!

One day, my eldest son had some friends over. Robert was pestering them crazy. I told Robert to give them some privacy. With eyes wide he said "Is THAT what they're going to do?!" Ummm, no, that is not a group activity (at least not in our world).

One time he walked in on his father and I at an inopportune moment. He said "Daddy, whatcha kissing Mommy naked for?".

One time he stood stock still, very solemn, feet slightly apart, arms hanging down with his hands clasped. He said "Guess what I am?" We had no idea. He said "I'm a Funeral Director". It was a dead on impersonation of some of the Director's my husband works with. His sense of mimicry is unparalled.

I'm sure I'll remember more Robert stories, but those are the ones that are foremost in my mind.

Love that boy. Charlotte

Thanks for that insight into your life with 'Robert'. It must be such hard work and I should think the quirky sense of humour is essential but I love the stories and he sounds a great kid.

Thanks for sharing them with us.

Liz

Aw, Charlotte, your stories of Robert are wonderful. He brought a smile to my face today.

I heart Robert!!!

i work with a 9 yr old high functioning and brilliant but severely Autistic boy. He brings more smiles to us than we could ever imagine! Everything is told in third person directors talk:
for example ...( I'll call the boy Joe for now, though his name is amazingly unique and awesome)...

Typical Interaction might be

"ms Jess says hi Joe how are you today"
- I must repeat as is or my directions are repeated

"joe says 'ms Jess can we go for a walk'"
"ms Jess says'not right now Joe, there's toooo much work to be done"

I am not doing the story much justice... Let me add he is African American with a gigantic smile and high pitched smiley voice and glasses made of blue plastic bc he gets so nutty sometimes he breaks them. He skips instead of walking, and his heart has to be ten times larger than the rest of ours.

The world needs more "Joe"s!!! And Roberts!!!