Dealing with the Dragons: Parents vrs. Schools

Recently, I have had the privilege of talking to many parents of children either on the autism spectrum or with similar disabilities. One of the common themes that is coming up in conversation is lack of agreement of service plans between parents and schools. For instance, a school may not provide what a parent believes to be a necessary service for their child, or they may suggest services or interpretations of a child’s behaviour that are perceived by the parents to be ridiculous.

My family also struggled with the issue with me either being seen as a smart child who was misbehaving and not in need of any services, or schools suggesting unnecessary services, underestimating my abilities, and failing to recognize my strengths. As someone who has some experience volunteering in classrooms, staff are often overworked, have children with a vast arrange of abilities in one class (some without diagnoses), and it is difficult for them to meet the needs of every child.
One of the biggest things that helped for my family was getting professionals to advocate on their behalf. For instance, a family could ask for a referral to a psychologist or a psychiatrist and the expert could often after evaluating the child, write a letter requesting appropriate services on the parents’ behalf.

Sometimes, if a child is having an extremely difficult time in school, is in senior high, and in a major centre, there are complete homeschooling packages that allow a teen to receive the curriculum outside of the classroom for an indefinite amount of time.

Most importantly, parents cannot always change what is going on at school. The next best thing is to make your home a safe haven where your child can be themselves, and always be open to listening to your child. That can often be enough to get them through some very difficult years. It’s why I made it.

Assistive Technology: When is Enough Enough?

Due to coordination and symbol recognition difficulties, I learned to “draw” the letters for cursive writing. However, I was concentrating so much on the drawing, even after a few years that it was taking away from the content of my work. In grade six, they finally allowed me to return to printing. By high school, handwriting assignments was beginning to affect content of my work because although I have functional printing skills, drawing letters takes concentration away from the academic task. The assignments were too long and complex for me to be concentrating on printing and writing a good response or taking detailed notes in class. Copying from the board confounded the issue further.

Thankfully, I had been using a computer efficiently since grade school so It was easy to transition me to using the computer for written assignments. My parents and teachers had me use my handwriting and printing long enough to develop functional skills. I can write my signature in cursive and I can print short assignments in an emergency. However, with the technology available, it did not make sense for me to continue to write by hand at the expense of my academics.

For those of you with disabilities or parents of children with disabilities, at what point, if ever, did you decide assistive technology was best for your child?

My Home Within my Home

A few months ago, my family and I have started the process of moving me into my own “apartment.” My parents and I pooled our money to pay a carpenter friend to remodel the basement as an apartment. It already had its own complete kitchen so it was the perfect setup.

I moved in about a week and a half ago. Since then, I’ve been doing my own laundry, practicing organizing and cleaning a residence, and developing some cooking skills in my small kitchen. It allows me to have my own space, while still having my family close by for support. Living in the apartment will also give me the necessary skills to live on my own if I am required to go away for a PhD. Program or to work. I want to remain close to my family, but be self-sufficient.

Is Away Ever Better?

I was reading an interesting website about a specialized boarding school in the United States for girls with Non-Verbal Learning disability and/or Asperger’s Syndrome. It has teachers who are specially trained in dealing with the unique learning styles of these individuals, a 2:1 student-teacher ratio, therapists to work with the children on communication and social skills, and a chance for these girls to be with peers who they can relate to. However, I wonder if being away from their family and community for years as a child and being in an isolated “special needs” community will have some negative implications for these girls as well. Readers, what is your opinion and/or experiences of residential schooling for students with special needs? I know it is commonly done with students who are blind or deaf.

No Place for Hate

I have never understood discrimination or hatred. Last week, I was surfing the internet for an update on a news story about a beautiful 8-year-old with a severe facial deformity. Instead of finding the story I wanted, googling this child’s name turned up several sites that used disgusting language to describe this little girl’s appearance, stating that she’d be better of dead, a drain on resources etc. This is a little girl who dances, plays with her siblings, goes on vacation, reads, and does many of the things that girls her age do. She has some medical limitations, but her family’s website described her as a happy child who enjoys life.

I believe that young children who grow up believing that is acceptable to bully their peers for differences in the playground will grow up to be adult bullies if left unchecked. As someone who was bullied excessively from grade six to grade 12 and who still struggles with anxieties as a result of certain things that were said to me, I believe something needs to be done about this.

That something is not promoting eugenics or hiding away individuals with disabilities because they appear “undesirable” to others, but dealing with the people who are the real problem—the bullies. Disabilities and medical conditions are already challenging enough for children and adults to deal with, they don’t need the additional challenge of dealing with bullies. Sometimes, and I believe this is often the case, the damage done by the bullies can be worse than the effect of the original disability.

Let the child with Asperger’s Syndrome be greeted with “hello” as they skip around the edge of the playground in an uncoordinated manner. Let the little girl with a different face be invited to come join the neighborhood game rather than being pointed and laughed at. Let the little boy on the playground sing and hold hands with the toddler in a wheelchair rather than pointing and laughing at her. Let there be one day when different abilities are accepted as readily as differences in culture in a multicultural city.

The True Meaning of Dual Exceptionality

Individuals with AS and above average intelligence are sometimes in an awkward situation in society I’m a 26-year-old graduate student in educational psychology with a paper published in an academic journal. I also can’t drive, can’t recognize my bus stop in the dark, struggle to recognize faces, group conversations are very difficult for me, the list goes on.

Sometimes when people first meet me they notice my motor clumsiness or social awkwardness and assume me to be developmentally younger than my age in all areas. In school or work situations people are sometimes unsure how to handle my awkward attempts at social chit chat. Yet, I could talk about one of the latest theories for working with children with autism and implement it successfully with a child.

Sometimes people don’t even notice they are treating me different than their peers. Or sometimes they are friendly with me, but stare wondering why I do things a certain way.

It’s frustrating to have to ask for a seat on the bus because I can’t balance on the poles, to have to ask for help tying a child’s shoe on a job working with children, to ask for directions to an obvious place, but over the years I have learned to ask for help with these things, even if it is awkward.

This year, for one of the first times, I have classmates coming to me for help. There is a research methods course in our graduate program and my undergraduate experiences gave me more research opportunities than most of them. Still, the same classmates that ask me for help may be the ones helping me find a place on campus.

Insider Insight

I am greatly enjoying being a Master’s student in special education. This year is course work, and next year, I will be doing my thesis. The other day, before I was due to attend my class on severely disruptive behaviors, my mother and I had a discussion. When I was younger, I used to say inappropriate things or poke people in order to obtain “feedback.” It didn’t matter if it was positive feedback or not. If people got upset with me, I would always be baffled and say things like “why are you upset?” or “You’re so sensitive!” I didn’t understand how small behaviors could make somebody angry and my brain could just not put myself in their shoes. It wasn’t until I was about 20 that I figured this out. Maybe it was because I reacted differently to that kind of treatment. If my peers did those kinds of things to me, I would laugh inappropriately or get over-stimulated by it. When I was younger, my parents often thought that I was deliberately trying to annoy people because I’d say “I wanted to see what your reaction was” as if it was an experiment. However, I was always baffled by the results of the “experiment” every time which is probably why I repeated it.

On the other hand, if someone was experiencing an emotion I understood, such as feeling sad over a loss, I would be right there. I remember when I was a little girl and my grandmother gave my brother and I some pretty beach rocks as “presents” at a picnic. My brother lost one of his rocks in the field. Right away, I offered to give him one of my rocks. I knew what to do in that situation.

In my work experience, I worked with one child who had severe autism whose only way of seeking interaction was inappropriate behaviors such as hitting or spitting. Each time he was punished, he would repeat the same behaviors again even during the punishment. This individual wanted social connections, but was rewarded by any social response, even very negative ones.

As I take this course on children with emotional/behavior disorders, especially in subject matter where it pertains to autism, I realize I carry with me some understanding of the psychology behind these behaviors. In some cases, it is not a child simply “being bad,” but one that is confused or trapped.

With All Your Friends

I was browsing the book section in my Mom’s store the other week and I thumbed through a picture book describing a child’s first day of school. One thing I noticed was that the author referred to all the classmates as the child’s friends as if automatically assuming a child would be friends with everyone. In some ways, I wondered if books like that create false expectations for children about school, especially those with special needs.

I would not tell a child starting school detailed accounts of bullying or scare them. However, I wonder if there is a way to prepare them, especially a child who is different, that school may be a struggle for them. In my experience in kindergarten, I didn’t really care about interacting with other children, I was more interested in being chased down the hall. I made a few friends in first and second grade, but by third grade, I was mostly rejected by my peers.

Some children, especially in major metro centers, spend their first few years of schooling in a special education setting to try and prepare them academically and socially. When they are ready to transition to “regular” schools, they often go from an environment where their differences are the norm to being the odd one out. I believe it is necessary to transition these children to mainstream, especially if they have future plans for college or university and need the full academic curriculum. However, I worry about the social impact of this transition. In my opinion, I don’t know if it will result in the child forming typical peer friendships, or just being socially ostracized. I was never in a special education class. I had a teacher’s aide in kindergarten, but by first grade, I was on my own.

One suggestion I would make is to have a discussion with your child on the spectrum early on about their diagnosis and strengths and weaknesses. Role play social situations such as joining a game or talking to classmates. Initiate neighborhood games in your yard to get other children to join your child at play, then slip into the house when the interaction starts to go smoothly.

For me, I made a few friends along the way, but didn’t really find my place until university. I am still not part of the “mainstream” world, but I have realized I don’t have to be. The friends I do have are very important to me, more important than if they would have come easily to me.

Belonging?

I’ve always struggled to relate to my peers, especially when they come in groups. I’m no longer bullied like I was as a child. Most people at least attempt to be nice to me. However, many of my peers aren’t sure how to relate to me either. It is easy with someone who is socially awkward to make the mistake of talking to them like they’re a younger child or to simply give one-word responses to their contributions to conversation.

I am not alone in the world. I have as much of a social life as I’d like to have. I have a close family who remain my best friends, and a few very special friends outside of my family, one of whom lives in my city. The rest I keep in touch with through a combination of instant messaging on facebook, phone, and email.

I may not want to party every weekend, join in the gossip, or make friends with everyone I meet. However, it would be nice if more people took an interest in me as a person. It would be as simple as things such as being asked about my weekend, or listening if I told a story about the flood in our basement last week or acknowledging my comment on the approaching thunderstorm.

I am not a typical person in my interests. I do fit in well among my graduate classmates I have met so far. This is probably because I have more in common with these people and it takes common interest for any kind of friendship to develop. Even if I never do super well with acquaintances, it is the special friendships that matter and I have no problem with those.