To My Son's First Teacher......you set the tone for his school experience!

Photo courtesy of Kevin Pack

Nugget will be entering 4th grade this year at a new school. We were forced to change his placement when, in April of this year, he had over 800 aggressive behaviors while at school, according to the school's own data. Nugget has not shown any forms of physical aggression at home in the last 2 years. When Nugget was 3, he was receiving intense ABA therapy at home. He raced through the goals and finished the program in just 2 years. His behaviors were quickly reduced at home when my husband and I both starting applying these techniques as well, and still do. His behaviors at school continued, as school staff were not applying consistent positive behavior supports. They said they were, of course, but we believed Nugget's behaviors in this environment proved otherwise. We knew our son. Just because he has autism, does not mean he can't talk. He had no reason to lie about being "squeezed" at school by school staff, including the Principal. We filed for due process after Nugget came home with matching bruises on both of his arms. No one could explain to us how they happened. We did not approve of him being restrained, yet it was occurring. The school settled. Unfortunately, the ignorance of school staff continued to the point of Nugget coming home in April saying he would rather die. Needless to say, we did not send him back. The challenges Nugget faced started already in Kindergarten, 4 years ago. Below is an email I sent to his teacher at the end of the school year. This teacher has yet to apologize, or even acknowledge us, or this email. Kindergarten, I believe, was an extremely important year as it would set the tone for Nugget's perception of school. Unfortunately, it was not good and as many of you know, you cannot get those years back. To other parents, I say go with your gut feeling when your child is telling, or trying to tell you something. If he/she is not verbal, their own behavior can speak volumes. I have changed his name in the below email.

"It ain't over til' the fat lady sings!" at the Dr.'s Office

"It ain't over til' the fat lady sings"

Over the years, Nugget has developed some real anxieties that are a daily challenge for him. In addition, these anxieties can put a real damper on social interactions with others. I feel really bad for him since he can become totally stressed out by just a simple conversation between people if certain words, or phrases are used. We see a doctor every week to address these anxieties and so far I have been extremely pleased with the outcome.

 Today's visit proved to be more than just another visit to see the doctor. It was a first for me, both good and bad. At the beginning of each visit, I go in and talk to his doctor about progress, or lack thereof, and we plan accordingly about how to move forward. Nothing new today, we decided to proceed as planned. The doctor and I walked out together where it would be Nugget's turn to go with the doctor back to his office for a chat. As we walked out into the waiting room, Nugget was sitting at what he calls "his desk". This is the same routine, every time. He is sitting contently playing his Nintendo DSi. I decided to grab a magazine before finding a chair next to Nugget's "desk" and wait for him to finish his session. 

As I was flipping through the pages I heard, "Was that your son that was just sitting here?" with an agitated tone. I looked up to see a middle-aged, obese woman and she was not looking too happy. I immediately replied that it was, probably looking like a huge question mark. She snapped back saying, "Well, he called me fat!". I did not appreciate her tone with me, but I immediately apologized and said that my son has a little difficulty with his filter and will just say what's on his mind. I do not condone any inappropriate comments from my sons such as this, and if I had been sitting there when this happened, I would have used it as a teaching opportunity of appropriate/inappropriate comments. However, just the way she was acting towards me, I so wanted to say, "Well, some people call him autistic, but you don't see me making a scene". I kept my mouth shut. I did not want to utter the words autism and add to that stigma. Still, I did feel bad and had no right to judge her or her situation and I could completely understand why she would feel upset. I guess as a mother I just wanted to go into immediate defense-attack mode. Fortunately, she lightened up after I said I would discuss this with him. I guess that's what she wanted to hear since she just walked away.  I was sitting there trying to process what had just happened.

Did you just call my son the "A" word?

As I was sitting there watching the doctor give my 5-day old infant boy the "once-over", I couldn't help but to hold my breath and await to hear that everything was OK
"-Yep, he looks perfectly healthy. In fact, he is about the healthiest baby I've seen today. Most of the babies coming in today are jaundiced."
Ok, now I could breath. After all, that's what I had been waiting to hear all day. Although he wasn't sleeping a lot during the night, in fact waking on the dot every two hours round the clock, I figured it would get better as he got older. After all, he was supposed to be fed at these times anyway, and the nurse said he looked healthy. Contently, I drove home, unaware of what the future hold, but with a positive attitude. It will get better.
The months seemed to fly by and I seemed to feel more and more exhausted. My husband, doing the best he could to help out with the night time wakings, was starting to wear on him as well. We both knew that once he was awake, it was almost impossible to get him back into the crib without kicking and screaming. Having to get up early and go to work, we agreed that I would get up with the baby at night during the week, and he would let me sleep in on the weekends. I spent the nights on a couch in his room, afraid to almost get comfortable because he would wake up the minute I would start to relax. Things were not getting better. They were getting worse. He seemed so overly-sensitive to just about everything.
I was doing the dishes one day and he was in his playpen, when I noticed that he was just sitting there backed in a corner staring at something. I went over to see what it was. He seemed to be in some kind of a trance over some flashing lights on a ball. I called his name. He didn't even flinch. I kept calling desperately trying to get his attention, but he appeared to be totally unaware that I was even there. He picked up the ball and began mouthing it only now he was looking in my direction but seemed to be looking right through me. Horrified and not knowing what to think of this, I picked him up and just held him. Things will get better, I thought.

"Autistic" makes me cringe!

I know. Out of all the challenges parents and individuals on the spectrum face, how to refer to an individual diagnosed with autism should not be one of them. However, some people, including parents, often refer to individuals with ASD as being "autistic". This term, however implied, kind of gets under my skin. I can't help it. Why? I'll ask you one question. How do you refer to an individual that "has" something, like cancer? Do you refer to them by saying, "Oh, she's cancerous"? I doubt you do. You would usually refer to this individual as having cancer. The cancer does not define this individual, who they are, and vice versa. An individual with Down Syndrome, is not defined by being Down Syndome-ish, etc. So why does it make sense to refer to an individual with autism as being autistic? Autism does not define my sons. They are each unique individuals with their own interests, personalities, likes, dislikes, etc. They have symptoms of autism. The autism symptoms are merely a part of them and does not define who they are. Terms like "autistic" only add to the negative stigma surrounding autism that, in this day in age with the increase in diagnosis, should no longer be a part of society's impression of our children. Let's remember to apply the "person first" mentality when we refer to individuals that have autism.

Carry on, my friends, and raise a little awareness.