Using a Communication Book: Staying in Touching with School

Home and school communication plays an important role in any child's academic success, but for the special needs child this is even more true. Many special needs students are unable to accurately recall the events of the day. Others may not have sufficient verbal skills to be able to tell Mom and Dad what happened at school. The parent-teacher communication book provides a valuable tool for exchange of information, and is also an informal way to build a stronger relationship between the special needs family and the staff who see the child at school.

What is a home and school communication book?

A communication book is any tool that allows for informal, regular exchange of information between school and home, and back again. Some people prefer to use a few lines in the student's school agenda, some create folders or binders that use a customized form to be filled in at school and home. Still others, like our family, prefer a blank composition book or diary with no predetermined format. Although it is often designated a parent-teacher communication book, it can be read or written in by other adults too. This includes professionals and paraprofessionals at school, or other caregivers and educators who see the child outside of school hours.

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Back to School: Letter to Your Child's Teacher

Back to school season can be an anxious time for any parent, but especially for those of us whose children have special needs due to learning disabilities, ADHD, autism or other conditions. There is a joy at seeing our kids go off on their own to have new adventures and learn new things, but our experiences have taught us there will be challenging moments. For many of us, we would like nothing more than to take that journey with our children so we can be there to lend a hand when they or their teachers need it.

Going to school with your child may not be an option, but you can send a part of yourself to the teacher, the integration aide or the resource team by writing a yearly introduction letter. For a new student, it helps to break the ice and to prepare school staff for dealing with the child's challenges in a positive manner. For a student returning to a familiar school and resource team, the letter serves as a summary of things that have changed over the summer vacation.

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Photo: Michael Connors

Reconnections & the Tempation to Compare Our Kids

Associated Content regularly features a number of articles in each of its categories. Today I came upon a featured piece called, "Coming to Terms with a Child Who Has Special Needs." What was really neat about this piece was not the content (although it is worth a good read) but the identity of the author.

I first came across Ellen Seidman's writing when she wrote a guest post on the blog of a woman I had met online. The post, about how Ellen would like to see people approach her son Max when they first meet him, inspired me to write one of my earliest pieces for AC, "Special Needs Children: Telling All Their Stories."

Reading through the featured article, I was reminded to visit the blog Ellen writes about life with Max, who has cerebral palsy as a result of a stroke he had shortly after birth. And again, I found Ellen writing about something with which I could completely identify: that urge to compare our kids with other kids.

In her article Ellen gives advice to parents on how to cope with having a special needs kid. One thing that worked for her, she says, was to stop looking at where Max ought to be in his development. She learned to forget about the typical milestones of child development, and instead celebrated the milestones that Max came to. In a recent blog entry she talks about a magazine article that described the experience of another family whose infant had suffered a stroke, particularly about how deflated she felt when she read all the achievements of this other child.

Things Max has yet to do.

My heart sank, as awful as that may sound. It did. Not because I wasn't happy for this beautiful little boy— I was. Not because I didn't think it was an important article for raising awareness about pediatric stroke— I did. But still, that "Why not my child?" feeling swept through me. We got Max so, so, so much therapy back then. We still do. We've done everything we humanly can for him. And yet, he cannot pick up a Cheerio. He cannot speak in full sentences.
- Those times that make you wonder: Why didn't we get the happy ending?

I can very much identify with that feeling. Wanting to be happy for all the accomplishments of another child who has struggled to do what typical kids and their parents take for granted. Wanting not to seem bitter when the War Amps commercial comes on and some other mother is gushing about all the great things they have done for her child, all the things he can do because of the prosthetics and the computers, and all the special programs that help her kid feel normal. Wanting to be happy for a friend whose child has just won an award for some extraordinary piece of scholarship, or who has been chosen for a sports team, but secretly thinking that parent has no idea how lucky they are just to have a normal child.

I identify much more with this sentiment than the whole "Welcome to Holland" thing the psychologist was so eager for us to embrace when our son was first diagnosed. Maybe it was the travel analogy. I am not a traveller by nature. I like to be in familiar surroundings. Taking a bus across town to check out a new shop someone has recommended is a big deal for me.

Most days we are able to resist that urge to compare our kids with other kids. Now that they all use the toilet by themselves, dress and feed themselves, speak in something that could pass for complete sentences (some of the time) and have each mastered a few basic academic skills it's easier to let go of the comparisons. The hardest part is the first 3-5 years of a child's life, when they're so busy exploring and learning and growing. When it's really obvious just how far behind your kid is. Not behind some ideal of a normal kid, but behind all those neurotypical kids in your extended family and your neighbourhood. To be frank, that's a feeling I can really do without ever having again.

So I try not to compare. And like Ellen, I'm hopeful for what the future will bring. I am thrilled when my son learns to add and subtract whole numbers - even if he learns it when his classmates are beginning to add and subtract fractions. I am thrilled when one of my daughters discovers she can read music or play an instrument, when another masters a difficult dance move or martial arts technique, or when they manage to have even a single day where the cleaning and organizing wins out over the chaos and mess they create.

It doesn't take away all the sorrows and the stress of living with special needs kids, but it helps to stay focused on all the blessings they bring into our lives.

What Constitutes a Special Need?

Back in the 1980's I volunteered for the Garry Taylor Center, a facility that housed teens and young adults with intellectual challenges like autism and Down's syndrome. The facility was built so the clients could live in small, family-like units. Staff would plan activities like going grocery shopping and preparing a meal in the center's kitchen. once in a while there was even an extra special event like going to Belmont Park, the now defunct Montreal amusement park that had a single admission pass back when LaRonde was still fussing with several denominations of tickets for the rides.

I remember the staff piling a bunch of us into the center's station wagon for these outings. It was an old car with a handicapped vignette in the back window. The first time I saw it, I wondered if there were clients at the center who were in wheelchairs. The special parking spaces, I thought, ought to go to people who had limited mobility. Our clients may have been challenged, but there was nothing wrong with their legs. They could walk from the parking lot to the stores the same as anyone else.

Years later I came to understand that people can have hidden disabilities. A person's legs may work just fine, for example, but they could have a lung condition that makes it next to impossible for them to get from the far end of the parking lot to the stores in a reasonable period of time. A parent may also need a disability vignette for their car because they have an autistic child who is in fugue and doesn't recognize the danger of walking in traffic. It is far safer for that child when the parent parks close to the entrance, and the child is taken quickly inside away from the traffic.

What constitutes a special need, then? My child may have a diagnosis and a disability code recognized by the school for purposes of procuring special services, but that may not be enough to get him adapted transport from the city, or to qualify for a monthly disability benefit cheque.

Then there are people who may be officially considered disabled, but who don't self-identify that way. A person with a learning difference like dyslexia, or a chronic medical condition such as diabetes may be considered disabled, but not welcome the label or the special treatment. In a recent episode of Degrassi, Adam is given an escort to his classes and told he must use the special needs bathroom, because the discovery by other students that he is transgendered has created a furor and his safety is compromised. He has already been attacked by two other students, and although they've been suspended from school there is a possibility someone else will seek to harm Adam.

Adam doesn't much care for being labelled handicapped, but Mr. Simpson reiterates that he has special needs. And indeed, it seems to me that he is disabled not because he is transgendered, but because of how the other students treat him. The World Health Organization discusses the concept of disability:

Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.

Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives. (emphasis mine)

At least some part of disability is how the person is perceived and treated by the society in which she lives, and how difficult it is for him to participate in the same activities as the rest of us. Certainly a bias that causes a person to be treated differently or an obstacle to the individual accessing everyday services such as medical care, education or workplace, or leisure activities, does create a special need - even if there wasn't much of one before.

Early Diagnosis & Treatment for Autism

Autism diagnosis and intervention is not happening fast enough, says Dr. Wendy Roberts, autism researcher at Toronto's Hospital for Sick Children. She was discussing a groundbreaking American study in which children as young as 18 months received intensive intervention following the Early Start Denver Model pioneered in Sacramento, a method that combines aspects of both social and behavioural therapies. Almost 30 percent of these children improved vastly over the course of two years, compared with only 5 percent of children in a control group referred for traditional intervention in the community.

Roberts emphasized the importance of early detection in helping children with autism spectrum disorder (ASD.) Many children in North America are not diagnosed until the age of 24 to 48 months, and after diagnosis there is often another long wait before families receive intervention or other necessary services. Like many autism researchers, Roberts advocates routine autism screening for all toddlers, and beginning intensive intervention as soon as there is a suspicion of developmental delay - even before diagnosis is confirmed.

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School Supplies for Students with ADHD

Attention deficit disorders (ADD and ADHD) are generally diagnosed using a checklist of symptoms. One of those symptoms is often losing materials necessary for a task - like school supplies or textbooks. While some people may think that hyperactivity is the most obvious sign that a child has ADHD, for our daughter the first sign that all was not well at school was definitely that she constantly lost or forgot things.

Kids who have attention deficit disorders don't like to forget things, and they like it even less when their disability gets them in trouble at home or school. As the adults responsible for helping them get a good education, it is up to parents and teachers to help kids with ADHD develop strategies to overcome their attention deficit, and to give them tools that will help guarantee their academic success.

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Is ADHD Really Over Diagnosed?

Attention-deficit/hyperactive disorder is a neurobehavioural disorder whose symptoms begin in the preschool or early elementary school years. The most common childhood psychiatric condition, ADHD will affect just about one child in every school classroom. Although some people seem to outgrow the condition, a significant number will continue to have symptoms into their adult years.

The primary characteristic is chronic inattention, sometimes accompanied by hyperactivity or lack of impulse control. While this may sound like a lot of children you know, those with genuine ADHD struggle with significant symptoms that can't be eliminated simply by more effort on the part of the child or by "better" parenting skills. People with ADHD experience varying degrees of difficulty in a number of areas, including at school and in performing normal activities of daily life.

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