The Little Bus
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| Tue, 05-31-2005 - 12:23pm |
The Little Bus
I never knew anyone disabled until my son was diagnosed six years
ago with Autism. When he was just two, I remember asking my husband
how kids get to ride the little buses – they seemed so child
friendly – I couldn't picture my `baby' riding the
big bus. Talk about living in a vacuum. What a laugh that story's
become. I now have four sons and three get to ride the little bus.
A few years ago, I was picking up my typical son from preschool and
another mother complained to me that the boy next door gets a bus,
while she has to drive her child back and forth every day. "And
he hardly seems disabled, " She said. I felt a twisting of my gut
and my left eye probably twitched uncontrollably, but I kept my
mouth shut. Unfortunately she started to seek me out, two or three
times a week for this same discussion. Since I was PTA president
then, she believed I could influence the district transportation
policy.
Finally, on a day where 11:30 am felt like 10 pm, I looked her in
the eye and said, "I know it seems unfair, so why don't we
trade?
Ill take a typical child and drive aback and forth and you can have
an autistic child who gets to take the bus." I didn't speak
with her much after that. In that short conversation, I couldn't
possibly pry open her world to what the little bus really means.
Personally, on the `down side' that little bus means:
watching typical children run and play and laugh while my child
floats alone in his own world,
spending over 15 hours each spring developing and Individualized
Education Plan for each of my three children
meeting every 4-6 weeks with each of those child study teams to
exchange notes, support each other and maybe switch strategies,
the silence of the phone – no calls for play dates here,
huge meltdowns of pure panic because my son can't comprehend that
today we are going to stop at Super G before going home,
trying to explain to my sobbing 10 year old why he can't go on
the big bus with his little brother, because he needs a different
school, Concerta, Prozac, ear tubes, echo-cardiograms, EKGs, blood
work, genetics, pediatric: cardiologists, ENTs, and GIs, intestinal
biopsies, tonsillectomies, adenoidectomies, emergency surgery,
special diets, picture schedules, sign language, social skills
programs, sensory integration, evaluations, ABA, Verbal Behavior,
DIR, physical therapy, speech therapy, and occupational therapy,
and waiting, hoping and praying for the miracle of achieving an
ordinary developmental milestone.
On the `up side' free transportation means
a heart that soars each time I hear "Mom" because it took
four years to hear it,
always believing in Santa Claus,
finding joy in an unexpected kiss from my child who doesn't like
to be touched,
laughter that is genuine and deep,
finding peace, understanding, tolerance and patience where I had
none,
unbelievable happiness when I hear "I did it" after weeks and
months of trying
joy and gratitude for every inch of achievement because no one works
harder than a child learning to walk while his peers run by, a child
learning to talk while his peers tell stories and a child learning
his ABCs while his peers read books.
I confess to have been ignorant and frightened of disabled people.
Once after church, an altar server caressed my oldest son's
cheek. He couldn't speak, he had Down Syndrome. I felt nervous and
uncomfortable. What a shame! I had spent thirty years in darkness
about disabilities and now I could write a book. Now, I live on the
other side of the fence. I love my four sons, three disabled, one
typical and for them, I am giving my life, so that there is a place
in our community for them as happy contributing adults.
Would I trade for the big bus? I don't think so, I'd rather
we all ride the same bus – of comprehension of walking in another's
shoes. Thank God, the little bus has taught me that.
So, dear mother, whose angst is caused by unfair school
transportation. I'm sorry I `snapped' at you years ago.
I wish for you a discovery: that the chambers of the heart become
infinite when you know and love someone with special needs and that
what matters most is not what you get, but what you give.
Carolyn Curran
President
Cherry Hill NJ Special Education PTO
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Seems this is not an uncommon event. I posted the same event happened to me last year. The good news is that my neighbor no longer thinks I'm getting good bennies and she's not. LOL Although I wasn't quite as aggressive in my response. I try to be tolerant of people's ignorance, they don't know what they do sometimes.
http://tinyurl.com/cpbua
AH HA!
I knew I had heard that story somewhere before!
This year the kids go to the neighborhood school. They offered the little bus for Mike but I declined since I was going to the school anyway. Next year, Cait again will be taking it. She took it in 2nd grade and in preschool. Now she is old enough to know if she is being teased about it. My neighbors are cool and understand. Most of them are older. The ones that aren't are Special ed teachers, but I do worry about the other kids at her school.
Renee