The Beginning of the End Has Been Forever, I Just Didn’t Know It

• 17 years of advocating in the public education arena
• 4 years of college to obtain my Bachelors of Science in Nursing
• 5 years of practicing Nursing
• 2 years of waiting on a waiver
• 5 months of waiting to start at the new school
• 1 day to derail our plan (Routines and Prized Possessions and Violations)

Looking back, I think I knew the end of our plan was imminent the day the teacher put her hand in Jessica’s pocket and took Jessica’s phone away from her.

The stubborn survivor in me refused to give up without trying a little more. To help Jess regain some sense of security, I resigned from my job. My next job would begin 8 weeks later. During the 8 weeks I would be off, my goal was to be available to help the school so that together we could make it work.

Communication From School

Exactly one week after I resigned, I heard from a teacher for the first time since Jess started school. Up to that point, I had not been invited to the school, had not been asked for help in any kind of way, and had not felt welcome. I got the following email from Jessica’s newest teacher:

We had a very unexpected and unsettling situation this morning.  While in the gym Jessica hit a peer several times on her back with her cane. They were seated a few chairs apart and unprovoked, Jessica hit her.  Jessica was brought back to the room and I talked with her. I explained that she cannot hit classmates.  I asked her to apologize to the classmate that she hit and she said -“I will not do that, I will not apologize to her until I talk to my mother.”

I have familiarized myself with protocols for Jessica… and I don’t see where physical aggression is addressed. She cried for the most part up until lunch time.  She did not eat any of her lunch today but did drink her water. Sandwiches, fruit and a vegetable salad was what was served… She worked on the iPad with staff this afternoon.  One thing I have noticed is that she does not have patience when staff is working with other peers. She will interrupt when staff is teaching others and will continue to verbalize even after staff has asked her to be patient and wait until they are finished. 

Let me know what you suggest to do in these instances.  All help will be greatly appreciated.

My Thoughts On This Communication

As her parent, these were my inner questions:

• Why didn’t a teacher call me when that happened?
• Why didn’t they let Jessica call me when she wanted to?
• Did it occur to anyone that if they had let her call me I might could have comforted her and settled her down?
• Why didn’t they know Jess doesn’t eat sandwiches and salads? (I mean, like, NEVER EVER!) because it is one of the things we discussed in detail in our planning meetings.
• They have a cafeteria with lots of options, why was her only choice a sandwich and salad?
• Why does she interrupt, verbalize, and not have patience?? Ummm… let me think…

• Autism
• Developmental Disability
• Anxiety Disorder
• Attention Span that is about 2 seconds long

• And, why did they not accept the repeated offer of help from the experienced teacher who knew Jess so well? A multitude of times he told them they could call him anytime and that he would be happy to even go to the classroom if needed.

My Response

I approached this issue by assuming that they knew absolutely nothing about Jess, and explained as many of her eccentricities that I could.

• Although verbal, her presentation of autism is very much as a communication disorder. She is almost never able to directly say what is bothering her. Clues include body language and unrelated comments, which help us know when to start working on settling her. Some of the comments she makes relate to being upset about people moving away.

• Jess is very sensitive about people touching her things, specifically her phone and cards. This is not due to selfishness, but a fear that something will get lost or broken. Once these things are out of her hands, she can no longer see them and know that they are ok.

• Jessica spends the majority of her day in motion. She sits for meals, and sometimes will sit in the floor when she comes to talk to us in the living room. She does a lot of pacing, especially when she’s happy, excited, or upset.

• Jessica’s attention span is extremely short. When she is upset or extremely anxious about something, it is about 2 seconds long.

• Jessica talks from the moment she wakes up, until she actually falls asleep at the end of the day. She has always done this. Most of this is self-talk. That is how she often works out issues for herself. It is also how you can get clues to her emotions, and other things that are going on.

I Held On To My Optimism – But Only For A Little While

Optimism is one of my strong points. I thought things would gradually get better.

Jess called me from school the following Monday morning. Her teacher was absent and Jess was upset. Looking for someone to go check on her, I sent an email to my only contact at the school and got no response.

Later, when the bus brought Jessica home, she and the driver were both very upset. Jessica had been spitting and cursing and would not calm down. The driver told me she was going to have to “write it up.”

Oh

My

Gosh!!

First of all, I got pretty perturbed. I began to ask myself, why was I doing all of this? Initially, Jess had been so excited to start back to a program. Then, everything had gone wrong, and she was regressing in all kinds of ways.

Oh yeah, I remembered why I was doing all of this. I needed to work and earn a living. She needed to be taken care of while I worked. She needed to be safe, and happy.

She was safe, but so far from happy. She was very unhappy and although she was only attending three days per week, she started saying she hoped she didn’t have to go to this school for very long.

…

Uh oh…Another of our long term plans and efforts were circling the drain. I had to face that this might be the beginning of the end of us finding a place where Jess could fit in.

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