Monday, October 3, 2005

Leveling the playing Field

Why is it that when you have a visible disability, no one questions it. Accommodations are made and help is freely given. But an invisible disability that is so devastating to some that they choose to end their life, doesn’t rate a passing thought. Even the word of professionals is questioned if the disability is hard to understand.

ADHD has long been recognized in children as a disability and learning disorder, but it seems that if the child doesn’t bounce off the wall and suffers more from inattention and disorganization, then he isn’t considered to have a problem. Add the stress of the “responsibility system to Aspergers and BPD and you can imagine how life was at our house.

When his doctors and I asked for accommodations for Andy at school, we were told it wasn’t fair to the other kids. Wait a minute, no one says "it isn’t fair" for the kid with a physical disability to be excused from running laps. Some schools even ban peanut butter from the whole building when one child has a severe allergy. How could our requests bother the other kids.

He was allowed to have extra time for standardized tests and that was never questioned. We didn’t even ask for that, the school did. Standardized tests it seems also rank the school so it was to their advantage for him to do well.

Finally one great lady said, that what we were doing was just leveling the playing field. The other kids weren’t doing 6 hours of homework each night, they didn’t have to bring home every book in their desks to make sure they didn’t forget one. These things weren’t going to increase his already high grades, they were just going to decrease his stress level. These were people who said they really liked Andy. Was this more about me? I couldn’t even think that. Why would someone hurt an innocent kid like this It was like pulling teeth to get anything agreed on Even then All of the teachers didn’t follow the plan. But it was a start. And I wasn’t done yet.

Things went from bad to worse. He was bullied on the playground, with little consequences to the star soccer player.

When Andy asked me to give one of my talks, it was OK'd initially. Then I got a call one night from Muffy (Ok her name wasn't Muffy) the school psychologist, who had the audacity to ask me if the kids had a formal diagnosis . Emphasis was hers. What did she think I did, pull it out of the Readers Digest? Did she want to see my medical bills? She went on to tell me how rare AS is Wrong!! One in 166 kids is on the autism spectrum. She thought we shouldn't be so open about our diagnosis and that taking to his class would embarrass and ostracize him. Heck the thing was his idea. What , should we go in the closet? I swear if she said one more time that she was "the mental health professional", as if that made everything she said true, I thought I would lose it.

It became clear that this was the principle way of backing out of her permission without having to talk to me herself. What a coward. Three days later I pulled the kids out of that school.

To be continued.........

Tuesday, September 20, 2005

Struggling with the rules

Having ADHD means being unorganized at least for me it does. It is also that way for my kids. Consequently, at the end of the day, when most kids easily toss the books they need in their backpacks in preparation to go home, it is a real chore mine. It takes much longer to make sure all the right materials make it home, and the pressure to keep up with the class, sometimes makes it all the more stressful. No one likes to be called slowpoke etc, when you are already considered odd.

One of the Rules, I have always had a problem with at the new school was the disciplinary system (curiously called a responsibility plan). Let me explain. Remember while you read this that what the system says and how it is actually carried out are sometimes two different things, but know that the children are very serious about this and fear it for good reason.

Each child gets a card at the beginning of each month. Technically this card is used to mark any rules violation. More serious violations might get more than one mark. Certain rules are black and white, while others are really up to the teacher's discretion. For instance, a missing homework assignment ie. not having all your assignments turned in by 8am in some grades, is a clear violation and cause for a mark. Misbehaving and disrupting class is also on the list of offenses, but that area is more of a grey area, since some classes are naturally more “noisy” and after "all kids make noise". Some teachers also have a higher “mark” threshold than others. Some kids will plead and promise anything if you don’t give them a mark. There are lots of conduct related behaviors that don’t consistently result in an immediate mark. But missing home work and being out of uniform do.

While on the surface this sounds OK. It should be up to the teacher to decide about behaviors based on many things including the specific capabilities of the student. However, that kind of leeway is not afforded the teacher when it comes to homework. Even in college, if you bring your homework by the end of the day, it counts. Here if your homework is misplaced, hidden in a different book, or found later in your lunch-box, not only is it marked late, but the mark on the card stands. Nothing about the student is taken into account. It doesn’t matter if he or she never misses homework or just decides not to do it in favor of TV. It also doesn’t matter if the book is forgotten. Since the school is locked up shortly after dismissal, even discovering this as soon as he gets home, returning to get the book is not an option. Finally and more relevant to my case, even a medical diagnosis that impedes the child and is documented is not taken into account. Not without a lot of fighting.

In my mind what this teaches the student is not responsibility, but that he can behave badly as long as he gets his homework in on time. Notice I didn’t say as long as HE does his homework. Some parents I know, instead of fighting this system, just do the kids homework for them. Don't get me wrong I am not saying that the kids shouldn't do their homework. I have been accused of this. I just want some reason applied.

Why the fuss? The consequences are much worse that a mark on the card, which by the way is done publicly in front of the whole class. Even in the work place, employees have the right to be disciplined in a private area. At the end of the month, in addition to any punishment from the parent, the child is punished again. One mark excludes him/her from the monthly reward activity. Again a public event. Get enough marks you get detention. Sure that’s fine, especially if it’s for behavior. But detention consists of sitting in a chair silently and still, not working, not doing homework. Doing nothing.

Now if you are already behind in your homework and have to spend an hour after school, when are you supposed to do your homework? Not to mention that for some kids, like those with ADHD, sitting still for even 15 minutes is a physical impossibility. A parent has to insist that an alternate punishment is used. Even then the infraction isn’t forgiven. After 4 or 5 marks in a year, the student is excluded from the yearly celebration. Even God forgives us our sins. He doesn’t make us beg forgiveness every year for something done a year before.

Then we come to "Being out of Uniform" Now I am fine with requiring uniforms and especially with the older kids, some variations in the policy is in their immediate control. But again, there has to be some wiggle room and the teachers either don't or feel they can't take a home situation into account.

The handbook says that the uniform is the responsibility of the parents, but the child gets zinged for the infraction. Consider this true scenario: Working mom with disabled Husband sudenly finds that husband in the hospital, critcally ill. At home four children the oldest is 11-12, youngest 3 perhaps.

Suddenly school uniforms are the last thing on anyone's mind. The 12 year old has to get himself and the younger kids ready for school, day care, etc. Even the best mildest manored kid would in my opinion have difficulty with this. Doing laundry, changing diapers, getting his own homework done and generally helping out while mom works, deals with insurance companies, tries to visit Dad, not to mention the general stress in the home with a sick parent. Tell me that kid is not responsible enough because his sister is wearing the wrong color socks or forgot her belt. Oh did I mention that this kid also has ADHD? No it's not my kid. Well at least he had company when he missed the end of the month party. He was there with mine, whose third strike was having his math home work stuck in his English Book.

Monday, August 29, 2005

It's only just begun

No I promise not to sing.

School Started in late August 2005.

I knew something was wrong at the Ice cream social. What was supposed to be a feel good, get to know one another event, soon was obviously one of those us & you, sort of things. All the class lists were up, but the strange/uncomfortable thing was that all the kids from the “home team” had their birth-dates next to their names. The “visitors” did not.

This clearly identified the two groups as such. There was no attempt to make the new kids feel welcome. To make things worse. The information was clearly available for both groups or they could have been left off both groups, but there was no move or Leadership? position taken by the principal. Was this to be a forecast of the rest of the year?

I felt close to so many of the kids from our old school, but I was also concerned for my own. How would these new kids (and parents) react to my rather Odd kids. I knew the parents were resentful and since children learn what they live, I was afraid the kids would be too. Add the teachers with a new principle and much larger classes, and my kids would get lost for sure.

Friday, June 17, 2005

Starting Over

After a few days and lots of tears, I revamped my site, registered my own domain name and started over. I decided to make it a kid friendly site for the kids at the new school. It would be full of learning aids, games, puzzles, computer information and other fun things for kids. When I emailed this news to our principal, she sounded delighted. She said it sounded like a great idea, and would place an announcement in her regular weekly note. She also promised a link to my site on the schools new site.

Things looked up. Now I could do my own thing and not have to answer to anyone. What I was thinking at the time, was that I could make it as colorful as I wanted to. I had previously been asked to tone down the background of one of the pages. Something I did immediately without question at the time. Now I wouldn’t have to. I could also provide information about things I felt my visitors wanted and supplement what the school’s site didn’t offer or couldn’t offer given the constraints of time, or space.

On the last day of school, I came up to school. The principle’s weekly note had come out, but there was no mention of my new web site design. When I asked her about it, I got a mumbled and not very convincing “Yeah I forgot.” I was hurt. That was the last note of the year. Now how was I going to get the word out.

I decided to put a notice in the church bulletins. When that Sunday came, Mine was mentioned on our bulletin. I came home to check the web site of the other school ( their bulletin was the only current thing on their site at the moment.) I was really pleased to see not only my information but a large banner and an enhanced announcement. Then I checked my own churches site. Where my announcement was in the paper bulletin was a blank white space. I scoured the whole thing. It was nowhere to be seen. That jerk had not only taken the site away from me, but he was now also censoring the bulletin of my own church to leave my site out. Letters to the new pastor were useless. He claimed to have no control over the site. Who the heck was running the show over there, and why wouldn’t someone tell me why they were doing this.

Looking back I realize now how much this consumed me. It made no logical sense and violated all rules of the "do unto others" that we all hold so dear. What happened to acting like good Christians. I just didn't and still don't understand. Hidden or even not so hidden agendas are foreign to me. Maybe that's why I like computers so much. They responde (for the most part) in expected ways, they don't ridicule you or do things out of pure spite. They are like I am-- WYSIWYG

Sunday, June 5, 2005


Plans began to finalize as the school year drew to a close. The teachers were hired and our principle was chosen to lead the new school. She was getting so busy that I substituted for computer class the whole month of May. The kids kept asking me to come teach at the new school. It was the supreme compliment. At a school tour, I had seen the brand new fancy computers there. I told them all about it and how fast they would be. I also told them that I would be offering to help and maybe start a computer club after school if the new computer teacher would allow it.

When the powers that be finally decided on a name for the school, I immediately updated the home page of the site I had built and registered a domain name after getting the go ahead of a consolidation team member . Yes he was my husband but he was also the head of the school board and a committee head. I shot an email off to the principal informing her of my activities and offered to meet with her to discuss any additions to the site she might have.

Before I received her reply, I saw her personally at her office. That’s when she informed me that she had given the school’s website to the church’s web master. There was no reason given, other than she thought my site was supposed to be temporary. Something I had never been told.

Yes I was devastated. I didn’t know what I done wrong or why this was happening. I wondered if I had offended her in some way. I found out later that the webmaster felt I was horning in on his territory by fixing the computers in the lab. I had seen him several times but he never said anything to me. In fact he always appeared to be so tired and busy and annoyed with the fact that the kids had wrecked up the computers again. I didn’t want to take away his job as the designer of the churches site. Surely there was enough work involved there. It wasn’t updated that often so I assumed he was busy with his day job. and of course there was the fact that I thought that a site separate from that associated with either church would somehow, appease the other school. They felt we were taking over their school as it was and they had to make so many changes because of us. Needless to say, I left in tears, never being able to control those emotions.

Monday, January 17, 2005

The Seasons Roll by

That first year helped me out a lot. I still had up and down days, but I continued therapy and my Dr. kept working with my meds. Andy's first grade teacher had suspected he had aspergers in first grade, but the psychologist disagreed, so that was that at least for a while.

One day I got called about a paper he wrote with sentences for Spelling. Despite the disclaimer on the top that "none of these are true except for 2 and 8" they felt that the rest were a cause for concern. They were about killing and dying, which he still told me were not true and he sure didn't seem depressed, but I had to take him to the archdiocese mental health center.

After a confirmed diagnosis of Aspergers and ADHD, he began play therapy and learned how to lose gracefully etc. The spelling sentences as he said were of no concern. The kids at school were great with him. His logical mind said that since goalie was the only position in soccar he was good at, it would be counterproductive for him to "take turns" and play other positions. They went along with this like it was standard practice.

His odd behaviors were never made fun of and the teachers helped make sure he had all of his materials and assignments before he left for the day. At times he would ask me to give "my talk" explaining Aspergers to the class. I never got any resistance from the teachers. We even got a book to use. Yes he had an occasional melt down, but they developed ways to help him get through them quickly.

Katie was also given the same diagnosis as was I. It explained a lot to me. She was now in first Grade with the teacher who suspected the syndrome in both kids and she took it all in stride. In any other class Katie would be seen as a smart mouth brat, especially when she corrected the teachers mistakes. She always felt she was doing them a service for which this teacher thanked her. Her corrections were seldom if ever wrong. Her need to move and fidget were incorporated into her daily routine with no formal plan needed. Her teacher saw what she needed and provided for it. This is not to say, she got away with misbehaving. She got more than her share of demerits and even had detention once. Her learning needs though were taken into account as long as they were necessary for her enrichment.

At the beginning of the year, I asked to continue volunteering. I was met with just a bit of resistance. It had to be OK'd with the principal first. Had my classes been the subject of some concern? She did OK it, but in retrospect, I think she hoped I hadn't asked. She was not good with confrontations and would have agreed just to avoid one. There was no introduction at the parents meeting this year though.