You never know who you’re standing next to.

October 23, 2005 | By valmg |

I received this yesterday. I had one of these type of moments with a thoughtless person a few years ago, and I reacted very badly. My son has Down Syndrome not Autism, but I totally get it. I’ve come a way since then.

THE LITTLE BUS
Carolyn Curran

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? I’ll take a typical child and drive back 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, bloodwork, 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