Autism : Our Story

 

Our Story

It was my beloved Mark Twain that said, “Denial ain’t just a river in Egypt.”

We always knew something was different about Julian, but it was a long paddle up river to find out why. Denial is a protective force. It shields you from seeing truth even when the truth is right in your face.

Knowing instinctively that he was not a typical child from a young age, Peter and I wanted to avoid pathologizing what we thought to be just Julian being “different.” We wanted him to thrive, but we also didn’t want to change his nature. We didn’t want him to lose the light in his eyes. Of course, hindsight is always sharp as a tack- a tack that put a hole in our inflatable boat.

Early screening set me at ease because he met all his milestones and had no obvious signs of autism at his 18 month screening. Subsequent screenings showed Julian within normal limits, but symptoms slowly became more apparent. Around 3 was the time there was some concern from a Montessori teacher, which I met with resistance because of the inappropriate and unethical way in which we were approached with concerns. I dismissed his behavior because I believed the program to be too highly structured for a hyperactive child, one who I would never be willing to medicate in order to educate. I quickly took Julian to his pediatrician who was not concerned. I told myself if the doctor said he was ok, then he must be ok. I dismissed any thought that Julian was autistic. He later successfully attended a community preschool that was play-based and he thrived. As he grew into his 4’s and 5’s, I think we normalized Julian’s eccentricities as just him being odd. After all, our family is full of these kinds of oddities. I liked the doctor’s answer that there was nothing wrong with Julian. I saw his ability to function within his preschool community as confirmation of this and I held onto that as long as I could.

By the time Julian had finished preschool we had already decided to homeschool him knowing his hyperactivity would not be conducive to the kind of environment he would be put in our highly coveted and very competitive school district.

We made it through Kindergarten with flying colors homeschooling Julian through online public school. I loved teaching him and he seemed to be thriving. I had felt up to that point like I knew him best and that I had the ability to work around the challenges we faced. That had certainly been the case in Kindergarten. It had been so easy (except for writing which was exceedingly tedious). We had figured out what worked and took as many breaks as we needed. We were cruising along and I went on with my notion that all was well.

But when we got to 1st grade we hit a snag. We started the year with vigor, but when it came to sequencing in math word problems, I realized I was in over my head and that something was wrong that I wasn’t going to be able to deal with on my own. Historically I had never been one for letting others help me and it was a hard reality to swallow that if I didn’t act fast I could damage Julian. I wasn’t going to let that happen, nor was Peter, even with our boat having floated all the way downstream

I still hadn’t connected all the dots…..the obsessions with Dr. Who or Minecraft or whatever the item of the week happened to be, the not wanting to make eye contact, the hand gestures, the squirming away when I would try to hold him in a mama bear hug.

Julian’s frustration with not “getting it” started to overwhelm him in the classroom as we made our way through first grade together. I saw his love for learning in jeopardy because his mounting frustration. I became increasingly frustrated with him and started to lose confidence that I could be a good teacher to my son. We hit a point where he would meltdown and scream that he didn’t understand. It wasn’t fun anymore and every day became a fight to get through the school day. I thought he was trying to manipulate me because he didn’t want to do the work. He started to lose confidence in himself as a student. I started to lose my confidence in myself as a teacher and as a mother.

We started to seek doctors and/or programs that could help us pinpoint what was wrong with Julian and how we could help him. We hit a brick wall at every turn.
Two year waiting lists and no insurance accepted. After a few weeks when it was clear that services were not available, or at least not accessible or affordable, we turned to our school for help. Private evaluations, if you could even get it, would run into the thousands of dollars, which we clearly did not have.

But our school, Connections Academy came through strong for us. They quickly and thoroughly evaluated Julian and services were put in place almost immediately. The efficiency and care with which the school handled the evaluation actually shocked me. I hadn’t expected it to be that way. I expected them to want to give us the least services possible as I had heard horror stories of other families.

At our first IEP meeting, we finally understood why Julian was having such trouble. He was without a doubt on the spectrum. By the time I had asked for an evaluation, I already knew that this was true, but hearing was another thing. OT, Speech therapy as well as other accommodations were immediately put in place.

We were relieved to know, but we were also devastated. I blamed myself. Here I was a nurse and I let my kid go all this time without things that could have been helping him because I was afraid for him to be labeled and put into a box.

How quickly we had let denial sweep us downstream. We thought the swim back upstream would be met with resistance as is the case when you go against the flow, but our experience proved to be the opposite. We thought Julian being autistic would make everything difficult. It wasn’t difficult. It was DIFFERENT. He was different, I was different and I was comfortable with different. Different didn’t to mean difficult when we knew how to communicate, understand, teach and most importantly, reach Julian. When we met him where he was instead of asking him to meet us, it was clear that my fears that a label would define him or that he would have trouble having a fulfilling life were not valid. We were the ones who needed to shift. I understood as Ignacio Estrada explains, “If a child can’t learn the way we teach, maybe we should teach the way they learn.

And even more than that, Julian has embraced his autism as we have worked within his limitations as well as with his profound gifts. When we talked to Julian about being autistic, we approached it as something that made Julian special. We explained to him that his brain was a wonderfully made in that it worked differently than most people. It was why drums came so easily to him. It’s why his memory was so sharp, but it was also why it made some things so much harder, like making eye contact and writing. But Julian regards his autism more as a gift than a disability.
And as his parents, so do we.

Albert Einstein said, “I never teach my pupils, I only attempt to provide the conditions in which they can learn.”
So often we see our differences as anomalies instead of the opportunity to bring our own unique light into the world. I don't know many who would argue that we could use a whole more light in this sometimes very dark world. As teachers, as parents, it is our job to kindle this light. Sometimes we need only cup our hands over the flame to make sure it doesn’t go out as we walk through the storm.