Everyone has a story, even me.  Mine is no better than the rest and I won’t profess to being a poet let alone a writer.  i do have feelings and I have a point of view as being a parent of a special needs child.  I chose to be a single stay at home mom but i couldn’t do it without the financial help from my son’s SSI and public assistance for which I am ashamed.  I knew of no one who had a child like mine who wasn’t either married, or that had support from family and friends.  His name is Sean and he has Downs Syndrome.

Born at home, born on the floor, he wanted to meet the local firefighters of station 28.  Since then, he’s been brought home to me on more than one embarrassing occasion, successfully making me look like a complete idiot; like a failure for the umpteenth time & unqualified to be his mom!  His escape skills, that rival Houdini, have since been mastered to the degree that multiple security guards with their radios and their overhead cameras couldn’t catch him at the local Sears as he chose to change his wardrobe during their pursuit….he swore he would not go anywhere at age of nine as he sat next to the door….and all I wanted to do was go to the bathroom!

We bought him a bike at age 14, a tricycle.  After experiencing the freedom that wheels provide, he decided the next morning while I was doing dishes to go for a ride.  In a matter of seconds he was out the garage and on his way following his bus route….in reverse!  We had jeep drivers and dirt bikers and neighbors searching for an hour; we met all the neighbors in a VERY short period of time! He knew my simple phone number and uses it on a ”need to”’ basis; this time he knew it was safe to call home and he did.  Most of the time he knows he’s doing something wrong, like inviting local PD to the house to unlock the pantry so he can get a soda or otherwise just calling their 3 digit number, getting on the bus and embarrassing me once again when they come to the door and he’s not even home!  He just loves cops and their dogs.  We now have a shepherd he loves and no house phone!

Sean is now 20.  I’ve tried to go to work, college and other trade schools but have struggled to complete anything without having an interruption from an illness of some sort, an unscheduled escapade or a wardrobe disaster when he either forgets an essential component or uses too much of one thing.  (Sean likes clothes and will sneak layers of them on himself)

Having a life of my own is non-existent.

Though blessed now with the best teacher in the world, I can’t take her home with me.  For years he was placed in the wrong program.  He is happy at school, most of the time.  Now that my daughter is “full time” I have the freedom of going to his school more often and driving on fieldtrips.  In doing so, I see that when you have one of your own special kids, there are no “clicks” out on the playing field; for sports, school or anything else.  In fact, I observe with great concern that you’ll see no where else (outside of being the mom), in dealing with the various needs of the various disabilities.  There are many children/young adults who deserve just as much education, fun and supervised public exposure as anyone else here on earth.

Those who care for these people at school and at home on a daily or ongoing basis are underpaid and under valued — doing for them the things we take for granted, sacrificing their normal lives so that others can experience those very same things…or close to it.

I thank God that now I have the hope of being not only his mom, but his paid caregiver and the potential to have a life of greater proportions as i go out to fulfill my dreams!  I would like to be an EMT in a hospital setting, and not have to worry that my son isn’t being cared for in a safe environment, but rather to experience the joy of being sure his needs are met through IHSS and the caregivers they provide.
All people have the right to life — and a life of great joy that can not be found in an “institution” but rather at home where they feel safe.  IHSS is a necessary part of that.  It saves the state money, it creates jobs and gives those in need of it the ability to be safe and comfortable in the surroundings of their own home, just like everyone else.

For a good giggle go to :
“Sean’s morning routine” on you tube.
thanks and God Bless!

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