“Mom, can you tell me about the autism arc again?”

“Sure, buddy. Autism is like a rainbow. There are people like you, with PDD-NOS, who are on one side of the rainbow and the more autistic behavior you have, the more you slide across the arc. The kids on the other side of the rainbow have a harder time expressing themselves and their feelings, but they understand things just like you do. In fact, even though some of them can’t talk, they are very, very smart.”

“What type of kids are in the middle of the rainbow?”

“Well, again, they understand things just like you do, but maybe they have more tics; like flapping their hands or spinning around, or maybe they have trouble talking to other people.”

“Mom, I think I’m in the middle of the rainbow.”

“You do? Why?”

“Because of my tics. And I know most people aren’t like me, because I really love your double chin.”

Follow

Email

This is long. It’s been a year in the writing, so please bear with me.

Before my son started elementary school in 2007, I met with the principal of the school we hoped he would attend; a small, private, Catholic school where his older sister was a successful student and where we knew almost every family and child. And, therefore, they knew us and our challenges.

We couldn’t think of a better place for our son. We knew that the Christian values, their stance on bullying, the backing of our priest, and the supportive community was just what any special needs child deserves. Here was a kid who had barely survived his first few years, who didn’t speak until he was four, who had to be spoon-fed by me until he started kindergarten; we knew he needed to be in a place where kindness and compassion were paramount.

So I helped the school form a fundraising committee so kids like mine could attend. It was to pay for tools, aides, education and anything else these children needed. I stood up in front of our entire parish and asked for money and they gave it. Lots of it. Now, I feel like a fraud. I am so sorry.

There were times over his five years there that were really good and there were teachers who understood him completely. The students were great with my son and the other parents were just what we’d always hoped for; supportive, happy to educate their children, and never shunning us. Not once.

But, somehow, last year everything fell apart. He was sent home nearly every day for behavioral reasons, he was made to sit out of the Mardi Gras celebration (a religious holiday, no less), and he wasn’t allowed to go on a field trip to the Newport Aquarium even though my husband took a day off work to be his sole chaperone. Never considering that maybe seeing him with his father would give them insight into applying discipline that worked, they simply told us he wasn’t allowed to go.

Here was a child whose life had been full of some pretty awful situations and they didn’t give him the opportunity to be included in fun life experiences. I don’t know if I can ever forget that.

I took him to the Newport Aquarium last week while he was on spring break so he could finally have the experience. He behaved perfectly and we had so much fun.

Was my son well-behaved? No. Was he disruptive? Yes. He has autism. He made strange noises in the classroom, he had to be given some tests orally because he got anxious otherwise, he tore library stickers off of books, wouldn’t tuck in his uniform shirt (GASP), he cut up papers, didn’t do his homework and when the teachers would look for his papers they would find them in the recycling bin. Sometimes he talked back or wouldn’t talk at all.

BUT, he was also learning and he had friends who played with him at recess. He was involved in sports and went to sleepovers. He had the kindness and compassion that we were hoping for, just not from some of his teachers.

These are excerpts from a letter that one of them (not even HIS teacher, but another one in the building) wrote about him:

“…I gathered he did a number of things that…were belligerent attempts to gain attention…”

“I made several statements to him, ending with ‘do you understand?’ He refused to answer. I told him to say Yes or No. He refused to answer. I suggested maybe he return to kindergarten if he does not understand opposites.”

“Based on my interactions with him today (and in the past) as well as the challenges faced by many adults in the building, as a result of his behaviors, today alone, any outside observer might wonder why we have decided that (we) can manage this child’s needs. He does not have respect for authority, or a proper concern for acceptable social behavior.”

“I’m not sure he thinks in the long term, anyway. I do believe that (he) fails to see a bigger picture for his own future, but instead travels through each day based on his own assessment of one interaction after another. His decisions are impromptu, so to speak, and the very idea of building up rapport with peers and adults, of long term maintenance of good behavior, are not part of his thoughts.”

Would you leave your child in a building with someone who thought of him like that? Does that sound like someone who had been educated on dealing with autistic children? There was much, much more to the letter. Three full pages of it, in fact. Him not being allowed to go on the field trip was the deciding factor in us pulling him from the school – this letter that we received a few weeks later, was proof that we made the right decision.

But now he is in a school with no typical peers. He is hit, cussed at and screamed at by other students every single day. Yesterday, he came home in tears and said he doesn’t want to go back. Where do we go from here?

And, suddenly I’m wondering if removing the kids from these situations is the only solution. Maybe we need to remove the teachers. Certainly, if a classroom of 10 year olds can show compassion to a child with autism, an adult should be able to. Right? Especially a person who is trusted with the lives and education of our kids.

Maybe we need to take a deeper look at bullying by teachers, at special needs education and how we integrate children into typical classrooms. Maybe when a teacher wants to just give up on A CHILD (whether a 10 year old, medically fragile child with autism or a typical one), we should evaluate the situation to see if the child has more worth than that.

I’m pretty sure that every, single time we’re going to think the child does.

Follow

Email

Today was our annual reality check.

Before autism, eye surgeries, infections and hospitalizations; before kidney problems, hearing aids, choking and vomiting; before speech, occupational, physical and behavioral therapy. Before it all, there was his heart.

I was six months pregnant when he got his first echocardiogram. I waddled down the halls of Nationwide Children’s Hospital, then laid upon a table while a doctor looked at the right ventricle of his heart. It couldn’t have been much bigger than a peanut. I was decidedly bigger than one.

When his rare heart condition worsened two months later, they took him from my belly and whisked him away to Nationwide Children’s in an ambulance while I, again, laid upon a table. This time I was miles away and I didn’t get to see him until two days later when they let me leave the hospital for a few hours. It was Mother’s Day. It was fitting, but gut-wrenching.

They told us he would be sedated until he reached five pounds and then he would need open heart surgery. They were, thankfully, wrong. He came home three weeks later without that surgery. Almost 12 years later, though, it’s still looming over our heads.

So each year we trek back to those same halls and now it’s my boy who climbs onto the table. We are all stronger than we once were. He is 52 pounds of unstoppable energy. I am not. But, when I spy parents wearing “CARDIOLOGY” badges we smile, nod, and give each other mental fist bumps.

He still needs open heart surgery at some point, but we’re waiting. Stalling, if you will. Hoping, praying, and prodding the doctors to improve their technology so they won’t have to cut his chest open, spread his ribs apart and cut into his heart with a knife.

He had a heart catheterization when he was 13 months old and it was one of the easier surgeries he’s had. This is what we hope for. This is why we’re glad he’s small and grows slowly, so that his heart can keep up and each year that passes we know the doctors get closer to fixing this in a less invasive way. Today I chanted, “We want a heart cath! We want a heart cath!” If only my cheerleading could be enough to make it happen.

For today, though, he is stable and that’s really all we can ask for. That, and one more year until we have to walk those halls again.

Save

Follow

Email

Autism: The Writing on the Wall. And the driveway.

Follow

Email