Wednesday, December 1, 2010
"I have a child with special needs". I hardly ever say that. I usually state that my little man was born with Down syndrome. I look at his extra chromosome with the same awe that I do his blonde hair and blue eyes, its just what makes up Noah.
I've researched so much information since he was born 4 years ago, but not necessarily about DS. I have focused on Noah and his needs specifically. Nutrition, neurodevelopment, physical goals and our current challenge with speech. All of these are things I would be doing regardless of his "label".
I've struggled and still do, but not with his diagnosis, with expectations. I will never lower my expectations for Noah, I just need to continue to remind myself that he will accomplish all that is needed, but more importantly, he will accomplish and master these tasks on his own timeline. That doesn't mean I don't encourage and push him to do more, to try harder and be the best he can be; that thought process is for me to accept him and his efforts... today.
Noah has and continues to teach me to live in the present moment. My daughter Devin, our days were filled with what lower school will she attend to be accepted into the best high school for her greatest success in college that will look good on her resume for grad school...It was never ending!!!
I found myself going in that same direction with Noah. To the point that last summer he was accepted into an elite little prep school for their summer program. MY goal for Noah was to attend their summer school program and PROVE to the board of directors that Noah can do all and be all that the other preschool children are. MY idea was to educate the educators - oh yeah, and all this was at Noah's expense. See I figured I would work with Noah every afternoon to teach him what the next days lesson would be so when he was at school it would be review for him and he could keep up the with class.
HELLO! What about his well being? His downtime? His life? There was such a huge amount of accomplishment that was recognized by all who heard of his acceptance that I felt that I was doing it, I was proving to the world that Noah is amazing - he must be if this incredible school would consider him for enrollment.
Ugh! It's incredulous how our ego tramples over us and we don't even realize we are roadkill!
But, by the Grace of Noah, I saw the light :-) He is attending his Montessori school, doing well and is a happy little man!
Tonight I was talking with a friend, a very knowledgeable friend about Autism. I was asking her questions and I described a child as being "autistic". It wasn't until after we hung up that I realized that probably wasn't appropriate. A child has Autism, just as Noah has Down syndrome; he isn't a Down syndrome child.
There is a movement in the special needs community called People First Language...
People First Language (PFL) represents more respectful, accurate ways of communicating. People with disabilities are not their diagnoses or disabilities; they are people, first.
One of the five apples is green. One in every five American has a disability, making people with disabilities the largest minority group and the only group that anyone can join at any time: at birth or through an accident, illness, or the aging process.
A green apple is more like red apples than different; a person with a disability is more like people without disabilities than different. The U.S. Developmental Disabilities Act states, "Disability is a natural part of the human experience..."
So, yes, I have been a member of the special needs community for over four years, yet I continue to learn something new and to apply that knowledge every day.
And for the record... Noah IS Amazing! Regardless of what school he attends, how many words he can say, or his potential IQ. He is my little man whom I love with all of my heart and who melts the hearts of all those around him. I often wonder, who has the special needs????