The chaos and mania of parenting a child on the spectrum

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Yes, our Daughter Locked out the Principal

 “I say, Job well done,” my girlfriend texted me. It was just what I needed to cope with what had just happened.  Our eight year old was not only sent to detention, but gleefully locked the principal out of her own office.

After I got over the initial shock and distress, I realized that this was exactly what I felt like doing to the principal. Locking her out of her job, more accurately. I think my first grader may just be smarter than every talking head in the district. After three years of denying her appropriate services, maybe the solution was pretty simple. My daughter showed the principal the door.

My daughters’ emotional and aggressive outbursts had reached an alarming peak at this point, occurring multiple times a day. I heard, secondhand, that one day several teachers had to barricade her in the hallway inside of a wall of chairs and desks.   It is interesting that I never received a call about that incident. I probably should have marched down to the school upon hearing and demanded answers, but how could I when my daughter was hurting people? I knew it had to stop. I was devastated. Yet, I had been begging them to provide different supports, I had been suggesting that she belonged in autism support somewhere else, as painful as that was for me to even have to acknowledge to myself. Now, after all that, they wanted to know why she was becoming aggressive. “Was something different at home?” Huh?

It was like talking to a wall. It was like I had been screaming and shouting and no one was listening.

And I’m sure that is exactly how my daughter felt.

Her last outburst was over an art substitute. She was terrified at the prospect of entering the art room with a new teacher. She freaked. She scratched and clawed at the assistant. We had already been told that they finally agreed with me that she needed a new environment. She needed to leave. She needed to be taken to another school. Now that it was April. First they were going to give her a last chance to redeem herself. They were revamping her behavior chart with stickers instead of smiley faces. Or smiley faces instead of stickers. I’m not sure I was paying attention.

Maybe I should have been relieved, but I couldn’t’ believe that they were going to kick her out of school in April. I was devastated. I was crying myself to sleep. I was actually praying to God to help her so that she didn’t have to leave the only school she had ever known. And the only little “friends” she had ever had, despite the fact that she was alienating them every day. I wasn’t rational. I hated the way they were handling her at school. I didn’t feel that any of the supports were working, or that there were enough of them. Still, I felt by them taking her out of her school, she was being punished. It felt like a betrayal and an abuse of power, that after all my suggestions, they were now calling the shots. I hated them for doing this to her, for doing this to our family. Every time I thought of one of the little girls in her class, carrying on with birthday parties, and the end of the year field trip, and the class party, and the exclusive little brownie troop, a new fresh pain lacerated my heart.

They were giving her a week to shape up or ship out.

We had to sign the contract agreeing to the new three strikes and she’s out policy. Nothing else would change in her accommodations other than the twenty-something behavioralist and her twenty something special education teacher collaborating over inane sticker charts.

School Spirit day was approaching and it was suggested that I “consider” keeping her home for the day, as it might be overwhelming for her. The principal called me at home and explained that she, the guidance counselor, and the special education would all be in dress rehearsal for the “big show,” and since her “support staff,” (a stay at home mom with no education or special needs background) was only part time, our daughter would be left to process the noise and unstructured crowd on her own. “I’ll leave it up to you,” the principal told me.

I felt like I was being backed into a corner. It was like the school mafia was threatening me, using their bake sales and school spirit days as cover. My daughter and I headed to the mall for the day instead. Of course, it wasn’t a good day. I was sad, and stressed, and straddled between sympathy and resentment me for my daughter. “Why can’t you just be normal? Why can’t you just stop?” I kept begging her in my mind.

Of course, because she can’t process time and steps normally, and she has immense anxiety and ocd like behaviors, she sometimes moves through activities like a machine, not actually stopping to enjoy or experience them, but moving through them like a checklist to “get” to the next thing. It was not a day of leisure, shopping and chatting with my little girl. For those with no experience with autism like behaviors, it is similar to that stereotypical “Rain-man,” character, with her continually asking what is coming next. “Wait, did we have lunch?” she might say, if we had a snack on the go, instead of a full sit down. It is irrelevant whether she is hungry. It is the fact that we skipped a step. It will cause her major distress.

I told her we would shop and maybe get her a little something. When I detoured through the department store and stopped to look at a shirt for myself, she became belligerent and angry, rearing her head and shouting that she couldn’t wait, couldn’t wait, couldn’t wait to get to the Disney store.

I felt torn between wanting to protect her for all she was going through and angry at her behaviors. Maybe the school was justified, and I had just created a spoiled, monstrous brat that threw tantrums every time something didn’t go her way. My anger and frustration boiled up at her, feeling guilty that it was my own anger and lack of patience that caused her reactions. It was my fault. I am just a bad mother, I thought. I wondered whether it was my own cycling between anger and over-indulgence that was the problem, and now she was a monster. A monster who was being kicked out of the first grade.

It didn’t matter that her twin brother had not a single one of these issues. Nor did her older brother. Though he tended to be shy and sensitive, no doubt due to the added stress at home.

While she caused a spectacle in the store I took her arm with a firm grip and told her she was going to behave. And she turned and told me she was going to “Cut me head off.”

It was a gut punch. For all her tantrums, screaming, and aggressive behaviors, I always felt it happened mostly under duress. Most children with special needs develop “behaviors” and many try and control with them, which only makes sense when there is so much that they can’t control.

But this was horrifying. She seemed so matter of fact, I was terrified that she didn’t seem to flinch or react. I was afraid I had birthed a sociopath. I was in such shock, we just left the store and I gave up. She had me in tears, and I was holding her little shoulders demanding she apologize for saying something so awful. She broke down crying and kept apologizing over and over. I knew they were right. I knew we needed more help. I hated them for making me fight for it. I hated that they had me in the vulnerable position. I felt the world had been turned upside down. Hadn’t I been her advocate for all this time, and now they had me feeling like a detached, clueless parent. A bad parent. And maybe I was.

I sent her back the next day, after “School Spirit” was over, and just waited for the phone call. Of course it came early that she had been sent to the office. My husband, who fortunately works from home, was available and agreed to come. I sat in the passengers’ seat, slumped down to the floorboards crying. The principal came out to greet my husband and left our daughter alone in her office. Bad move. When they turned the corner, my daughter closed the door and locked it.

“We’re locked out,” the Principal said to my husband. “You see. This is what we go through. She has locked us out.” We sheepishly took her home. Actually, we took her for lunch. I watched her eat her grilled cheese, her eyes still wet, and her cheeks red and stained with streaks from where she had been crying. Now her body looked relaxed and calm and soft, sitting with us in the restaurant booth. All I wanted to do was hold her. “So you locked Mrs. X our of her office, huh?”

“She’s mean,” was all my daughter said. Indeed.

The next day I was called in for a private meeting. I knew we had lost the battle. She was out. Mind you, we had already been pushing for our daughter to be sent to another school for autistic supports, but without a clear diagnosis, she was categorized as a special education student and did not qualify. In fact, several of my distraught phone calls to the head of autistic support went outright ignored because our daughter wasn’t labeled correctly.

It didn’t matter that she had been having emotional outbursts on a regular basis. It didn’t matter that she was alienating herself from her peers. Nor did it really matter that she was below basic in every subject in school, and unable to complete much of her work, particularly math, because of her many emotional breakdowns. Most of these occurred over “spectrum-like” issues: changes in routine, transitioning from one room to another (which she had to do at least five times a day for special services), not including the changes for gym, lunch, and recess. She also broke down emotionally over anything that required fine motor activities (simply writing her name was difficult for her) and she showed clear signs of dyslexia which the school would not diagnose. She could not process games in gym because of her poor motor planning, and her poor coordination, balance, and gross motor skills kept her from fully participating even when she could grasp the games. This happened not just in gym and recess, but any activity that required her to manage both sides of her brain, in short, anything.

The principal informed me that she feared we had a much, much more serious situation here. “I’m seeing behaviors here,” she told me, from behind her large mahogany desk. “Not disability.”

Behaviors, not disability.

In the eight years of parenting never before had someone said something so hurtful. So ignorant.

When I had to tell my daughter that she would be changing schools, she cried painfully. She didn’t want to leave her friends. She didn’t want to leave her brothers. She said that everyone hated her and she wanted to be someone else. She said she wanted to be dead.

My seven year old wanted to be dead, and the principle thinks she doesn’t believe she has a disability.

She has been in autistic support for over a year now, and she also started taking a low level dose of anti-anxiety medication. She still has her triggers, but she is doing wonderfully better. They have not locked her in between desks. Instead she has a small classroom, and an area with bean bags, and pillows for when she is under duress. She has trained teachers who now how to safely, calm and hold her. Incidentally, her incidents are going away.

Sometimes she asks me what was wrong with her old school? What is wrong with her old principal?

I tell her that they just didn’t have the right supports for her.

“You know what, mom?” she says, “I think that they need to go back to school.”

Yes, I think that is a very good idea.