Off to school in a straight jacket

On the day before Christmas break, when most parents were scrambling to complete all of their last-minute Christmas preparations, I sat in a brainstorming session at Erika's school, working with her teaching staff and school administrators on a comprehensive plan to deal with some of her behaviors. Erika has been dealing with extreme anxiety, and the behaviors which come along with it are tough ones, ranging from unhygienic to uncooperative and, at their worst, violent. Whether you call it oppositional defiance or anxiety, we came up with about twenty different interventions to try to deal with her behaviors, and to ensure the safety of her classmates and teaching staff. Revisiting her medication, which obviously was not working for her, was put at the top of my to-do list.

Since then, we have changed her medication, completely eliminating an ADHD med which her pediatrician wanted to try her on before moving her to anything else. The medication did nothing to curb her behaviors or anxiety, and even made her sleepy during the day. Her violent outbursts at school (in which her teaching staff needed to physically restrain her) continued,  but now they were followed by a forty-five minute nap. A few follow-up doctor visits later, we are seeing some nice results from Risperdal (it took a second visit to get the proper dosage). She is now taking 0.75 mg/day (a fairly low dose), 0.5 mg in the evening and 0.25 mg in the morning. On this dosage, Erika's days at school have been going well, with no violent outbursts and a very high level of compliance. An added bonus is that she no longer needs melatonin before bedtime, which she has needed since she was three years old.

Erika has had a rough time at school these past two years, and I know that she needs this kind of intervention. I regret that we didn't find out about this medication two years ago. In first grade, Erika was doing well in school and spending time every day in a classroom with her non-disabled peers.  In second grade, with a new teacher and a new school, she was being put in solitary confinement on a daily basis. After enough days in solitary confinement, Erika decided that the best way to express her feelings about the situation would be to remove her clothing immediately upon being sent to the confinement room, and urinate on the floor. Every single time. You have to admit, for a child who is non-verbal, she has a way of making a point (Note: We moved to a different school environment in the middle of her second grade year. Erika's behaviors were part of the problem, but the approach of the teacher in response to the behavior was ineffective and inappropriate from day one, and evolved to borderline abusive.).  

So in November of 2009, even before the solitary confinement began, I felt like Erika's behaviors warranted medical attention. At that time, her pediatrician referred us to a psychologist/ psychiatrist team. Medications were prescribed, which did nothing to help her. None of the appointments with the psychologist or psychiatrist were covered by insurance. Believe me, there were many appointments. So here we were, spending big bucks out-of-pocket, with no positive results. Because Autism is shunned by the medical community as a condition which is not treatable and not covered by health insurance, I have felt the tremendous burden of researching possible interventions from the beginning, with little assistance from traditional sources. I have not relied on her pediatrician in the past, because the interventions (including nutritional supplements and special diets) always fell outside of mainstream medicine. The referral to the psychologist/ psychiatrist did not increase my confidence in the medical community's ability to assist her, and only confirmed my belief that medical intervention would be a financial nightmare.

Now that Erika's pediatrician has taken the reins, for the first time I feel like Erika's issues are being taken seriously. This is a tremendous burden which has been lifted, not only to have some positive behavioral results, but also to have a medical doctor who listens, who is concerned, and who is willing to prescribe what is necessary.

Anxiety Shift
Even when Erika's school experiences were at their worst during her second grade year, Erika was calm, cool and relaxed on the bus. This school year, her anxiety and behaviors have carried over to the bus. Since our brainstorming session in December, the school has required Erika to wear a "safety harness" on the bus. The harness fits snugly around her torso, like a corset. It zips in the back, and has straps which are hooked onto her seat on the bus. She actually looks like a parachuter when she's wearing it, especially once she puts her backpack on (there is even an odd patch of a parachuter on one of the straps). So while Erika's behaviors in school are fine now, the safety harness is still required for her to ride the bus. I'm not complaining about this, or questioning why they are requiring this. The only problem is that now, her only behavioral problems seem to be on the bus, specifically because she does not like wearing the harness. Catch-22.

For example, she is fine in the morning, until it's time to put the harness on, then she throws herself onto the floor, refusing to allow me to put it on. Or once it's on, she unzips it any chance she gets. Yesterday, she refused to let me put it on her. Luckily for me, her dad had not left for work yet. So with the power of dad's voice behind me, she tearfully allowed me to put it on her. As we walked out to the bus, hand-in-hand, she kicked me twice in the shins. Ouch. After addressing this behavior, we got onto the bus, and she kicked the bus driver's aid twice in the shins. After much apologizing on my part and attempting to correct the behavior, I took her red sunglasses from her as a consequence for her misbehaving, and the report was that she had a really rough ride to school. I also happened to notice that they installed plexiglass along the windows on Erika's side of the bus. Coincidence? No, it had Erika's name all over it. She's been known to kick the window. Yesterday, there was kicking and throwing little toys. You know, the toys that are supposed to keep her calm, and keep her hands busy. So again, I can't question the logic and usefulness of the straight jacket harness. They had to call the teaching staff to have them get her off the bus right away when they arrived at school. But once she was at school? A great, productive day. I am trying really hard to rejoice over it, but as you can see, we're not there yet.

There's a big guy on the bus

What a difference a day makes. She pulled the whole I'm-not-letting-you-put-that damn-thing-on-me routine again today, by lying on the floor in rebellion. Dad had left for work already, so I decided to take it in stride, and not be confrontational. We stood outside, and when the bus was in sight, I told her it was time to put it on. She let me, since she seems to understand that they're not letting her ride without it. As she got on the bus, I noticed that our regular bus assistant (a thin woman, who is probably somebody's grandmother) was not there today. Since she got kicked yesterday, I didn't ask any questions. I sort of get it. Today's assistant is a big burly guy who I have never seen before. Apparently, he is also a firefighter (firefighter jacket and lots of patches). All I could think was, "Sweet. She is NOT going to kick this guy." The same magical fear factor in her dad's voice (which I sometimes rely on in a pinch) was in the physical presence of this guy. Oh, his voice welcoming her onto the bus was 100% teddy bear, but I totally get it. And, most importantly: SO. DOES. ERIKA. Stay tuned. I bet there are no behavioral problems on the bus today.    

-Erika's Mom

To learn more about Erika, please visit the Erika's World website.