Friday, 29 July 2016

Why I Will Never Send my Child to a Toronto Public School

*I wrote this piece two years ago and decided against posting it. But after much thought and deliberation, I think it is beneficial to share. Our voices as parents of spirited children is often drowned out and not heard. Our children suffer as a consequence. I'm sharing with the hope that more focus will be placed on better managing funding and support for children with learning differences in the TDSB and beyond*

My curious three year old has been anxiously awaiting the school year all summer. Every day he would wake up and ask, “Can I go to school now?” As the school year came closer, we practiced how to get ready, talked about classroom routines, and role played quite a bit. He is ready, I thought.

I briefly met his teacher who greeted us with a smile. My anxieties melted away when I saw his eager body line up as all the kindergarten students did. He waved goodbye and went into the school. He’ll be fine, I thought.

As the weeks passed, I saw a change in my son's attitude towards school. His teacher sent home notes about his behaviour, the principal called with concerns, the lunchroom supervisor called him disruptive and asked that he be picked up for lunch. I was astounded. Within three weeks of school, there was an avalanche of concerns coming from the school staff. None of which included ways of how to help him adjust. He was the youngest in a class with junior and senior kindergarten students. I expected that school staff are aware that some students take more time to adjust than others. 

I asked to meet with the staff to discuss how to best help my son transition to this new environment. The meeting started off with the principal suggesting that my child be placed in a self-contained classroom. It is important to mention that at this point, my child was assessed and followed by a developmental pediatrician and has not been diagnosed with any developmental delays that would warrant such a recommendation. Once again, I was baffled by the lack of effort on the school's part to accommodate any learning differences and how quick she was able to jump to this conclusion. 

During this meeting, other panel members glanced to each other and seemed uncomfortable with the principal's recommendation. One social worker refuted the principal’s recommendation by saying it was very early on in the school year for such a recommendation. The principal ignored her completely and continued to insist that I sign on it. Another panel member started to speak about how to help the teacher by giving her certain tools to work with my son in the classroom. Again, dismissed and interrupted by the principal who so eagerly insists I sign. Why is she so eager? I wondered.

My parental instincts wanted to pull him out of this school. I was angry, frustrated, and felt helpless. The teacher that smiled at me in the beginning of the school year, the one I thought will be my child’s first positive school memories, was showing him the door out before giving him a chance. She was not willing to work with him or help him adjust to this profoundly new environment.

The next few weeks continued to go downhill. I made phone calls to anyone and everyone involved in the school district, children’s advocacy programs, pediatricians, other kindergarten teachers and school staff to get a better picture of how to proceed and whether this is standard for the TDSB. Just like any other parent, I had my child’s best interests in mind. Every time I tried communicating my ideas to the principal, she became defensive, condescending, and unhelpful.

I turned to the one in the front lines: my child’s teacher. I left her helpful tools and methods in dealing with the behaviours she was concerned about, I followed up and kept close contact with her. Most of all, I was sympathetic. I understand it could be overwhelming dealing with a classroom of 26 busy kindergarten students. I tried my best to communicate my sympathy and offered to help in any way. 

I pulled out my child from full-day kindergarten. I started putting him in half days after he came home complaining that a teacher “hit him”. I hesitantly brushed off my child’s allegations thinking it may have been a misinterpretation. When it comes to your own child’s well-being, it’s not so easy to brush off. When my child came home again complaining that the same teacher hit him, I met with the principal and his teachers. I mentioned the complaints to them and I was bewildered by their response. They scoffed. They laughed. They said it can’t be because that teacher wouldn't "hurt a fly."

Then my son came home mentioning a new teacher's name and a few students' names that I was not familiar with. I probed until I found out that the school has casually placed my son in another classroom for children with behavioural issues without my consent. To make sure my son's story checked out, I mentioned the new teacher's name in passing in a conversation with my son's teacher and she confirmed that they have put him into this new class, unofficially. Of course, this was met with denial on the principal's part. 
I could go on about the many unprofessional encounters I was met with at this school, but I made my point. I pulled my son out of this school thinking I was making a great decision. I thought this was an anomaly for the Toronto District School Board. There must be better schools here, right?
For senior kindergarten, we moved into another catchment area. I made sure to visit the school beforehand and had a brief conversation with the principal. It appeared to be a bigger school with more classrooms and more teachers, so naturally I assumed there will be more support. I was so, so wrong. 
The new principal was a breath of fresh air. Compared to the previous one, this one really knew how to communicate to parents. She made me feel like my concerns were heard, and that she will do all she can to help. I felt heard, and she made it seem like she was on my side. I appreciated that approach more than ever, especially after the damage the other principal has done to TDSB's reputation. Unfortunately, this principal had medical issues and was on leave for a good part of the year. 

What she told me upfront is that TDSB schools are grossly underfunded. Cuts were made to school support workers, there was a waitlist for program to help children with behavioural issues despite the fact that there is a growing number of children that need specialized support. I spoke with other TDSB staff off the record and was told that it very well could be mismanagement of funds. She alluded to the idea that there is a certain amount of intolerance towards children with learning differences. Teachers are overwhelmed by the large class sizes and are stretched thin. They either don't have the patience for children with learning differences, or do not think it is their responsibility to teach them. I personally experienced two different teachers in different schools try to pawn off my child to other classrooms.

 The new teacher showed little to no effort in trying to support my child. To add insult to injury, the entire classroom structure is outdated. Of the six hours the students were in school, they only had one 20 minute outdoor play period. The classroom was shared with a daycare so the majority of the sensory activities and crafts belonged to the daycare and the students were not allowed to play any of the activities. For a child who didn't understand this, he was constantly told "no," and it frustrated him. To put four year and five year olds in a room with interesting activities and tell them they can't play with it day after day, they will start to dread that environment. And that's what happened.

My son dreaded going to school ever day. He often said he "hated" school and missed his old school. That spoke volumes to me. In the entire school year, my son did not bring home one piece of artwork. When I asked about it, I found out that they did not involve him in most of the activities the other students did. They had no expectations of him, despite him showing reading readiness and met academic standards for his grade level. I contacted a school support worker about this and she was outraged by the staff's inability to include. She stated that my child's case is the "mildest, and least disruptive type of case" she has been involved with. She did not understand the lack of effort on the teacher's part.   

This sentiment was echoed by my child's developmental pediatrician. She believed my child's case was not one that warranted the type of reaction from the schools. More needed to be done. We sought out an autism diagnosis so my child can receive proper services at school. His developmental pediatrician said that the sad reality of this school district is that a child with learning differences will not have any rights or given the right education unless there is a formal diagnosis that he can lean on. A diagnosis gives him rights that the school cannot deny. We shared this diagnosis with the school. We thought they will finally give my child the education he deserves. Again, I was wrong.

At the IPRC meeting that we waited two months for, the panel said there is a long waitlist for kindergarten programs. Even those programs are for more severe cases and they will not be a good fit for him. They concluded his current classroom will be best for him with support in class. However, the school did not have enough funding for a support worker in class, and there are rules against hiring private help to go into the school. In other words, our hands were tied. This meeting did not offer any alternatives. I voiced my concerns about the teacher not following through with the IEP. I was told it will be discussed with her. I asked for a more effective communication strategy with the teacher. Again, it didn't happen for longer than three weeks.

My son's attitude towards school hit an all time low. There was nothing that the school changed or helped with, despite voicing my concerns to the superintendent. I was always met with vagueness. So I finally pulled him out of school. If this is how kindergarten is at the TDSB, I cannot imagine how the other years will be.

I hope my experience is an anomaly. I feel for all the bright students that fall in the cracks. For the students with teachers that fail to see their brightness; for those unmotivated to find ways to work towards an inclusive and stimulating learning environment. Unique children need passionate educators. They need educators who put their students ahead of convenience. They work harder to make students feel welcome. They certainly do not gather them into a separate classroom away from the rest of the students. I call that discrimination.There is a trend towards inclusive classrooms that is backed by much research. Most school boards have implemented this trend as per the Ministry of Education’s policy. Unfortunately, some still find loopholes and place children with unidentifiable special needs into isolation.

I share this story for two reasons. Primary school teachers have a tremendous responsibility. Parents leave their young children in their trust, and expect a safe and nurturing learning environment. There needs to be a way to hold educators accountable if they fail. To the family that moved cities to provide better education for their child, you did well. But some of us cannot uproot and move in protest of the poor school policies. There needs to be more funding and training for educators to better handle learning differences in the classroom. There needs to be accountability for denying students a proper education due to lack of funding. Secondly, I share this story for the other parents who have shared a similar experience. Know that you are your child’s best advocate.

Educators have an incredible opportunity to shape the future of their students. It is certainly not a day job that ends when you leave the classroom. Please remember that, a child’s success depends on your willingness to work with all students to help them achieve their potential. 

My awful experience with the TDSB has led me to look for alternative schooling options. He is now enrolled in a private school and has not been happier to be going to school. I see the spark in his eyes again. 

Wednesday, 20 July 2016

Sensory Processing Disorder and Why you Need to Know About It

When my three year old started complaining about his clothes being too uncomfortable and routinely took his shirt off in public, I thought maybe I was using an abrasive detergent.

Covering ears and wearing a tag-less shirt. 
When he covered his ears in pain at sounds that were not too loud, I thought he had superior selective hearing. 

When he walked around touching all the clothes hanging in the stores, running his fingers along the walls as we walked, and occasionally throwing himself on the floor or intentionally crashing into surfaces, I could no longer make excuses for it. 

He had sensory processing disorder and I didn't know it yet. Like me, you may have not heard much about SPD. I will explain why it is not a common diagnosis shortly. According to the STAR institute, Sensory processing disorder, or sensory integration disorder, is defined as a neurological disorder in which incoming sensory information results in an abnormal response. Children are either under-responsive or over-responsive to certain sensory information. If they under-respond to stimuli, they may compensate by seeking out sensory input-in other words, they are the sensory seekers. If they over-respond to sensory information, they are sensory aversive and will not tolerate sensory information that others find tolerable. What is interesting about sensory processing disorder is how unique it is to every child. One child could both under-respond to certain sensory stimuli and over-respond to other stimuli. For example, my son's sensitivity to his clothes indicates he is over-responding to tactile input, and his sensitivity to sounds is over responsive to auditory input. However, he is under-responsive to vestibular and proprioceptive input, which makes him seek out certain movements like spinning, jumping, crashing, and falling. All of his responses to sensory information are abnormal, making his daily routine both at home and at school a more challenging one. So why is this so important to know? Because it determines whether your child is having a sensory meltdown due to overstimulation, or a tantrum. Each one should be treated differently.

When I first read about sensory processing disorder I was overwhelmed by all the new terminology. Below I list the main terms that are routinely used in books, articles, and tips regarding sensory processing disorder:
  1. Hyposensitivity is when a child is under responsive to stimuli. 
  2. Hypersensitivity is when a child is over responsive. 
  3. Most of us have heard about five sense--sight, hearing, touch, smell and taste- when in fact there are eight. Proprioceptive input refers to the sensations from joint, muscles and connective tissue that contribute to body awareness. Vestibular input refers to the sense of movement and is centered in the inner ear. 
  4. A sensory diet is not an actual food diet like I initially thought. It is a list of movements and activities designed for each type of sensory issue your child has. Each sensory category has a list of activities to do with your child to help regulate their senses. I created a sensory diet for my child using the book, Raising a Sensory Smart Child. 

I was skeptical about starting my child on a sensory diet. It seemed like an arbitrary list. But I needed a solution to his sensory integration issues that were affecting his life, so I was willing to try it all. Below is the sensory diet I used based on his hyposensitivity to oral, preprioceptive/vestibular senses, and tactile and auditory hypersensitivity:

Chewy Tube from Amazon
My son would chew holes through his shirt collars and sleeves, and bit his nails raw. He is hyposensitive to oral stimuli.

  • Chewy tube around his neck 
  • Vibrating tooth brush
  • Crunchy, chewy food
  • duration: once an hour or on going. 

My child is hypersensitive to tactile sensory experiences. He is able to tolerate firm touch but not unexpected touch, tickling, or certain clothing and tags.

  • Human sandwich or burrito. This is a great exercise to give the child deep pressure he/she craves. Wrap the child tight in a blanket or sandwich them between cushions. This technique calms my child when he is overstimulated and helps him regulate his senses. 
  • Cover in a weighted blanket
  • Use a weighted lap band or snake

  • Jumping on the trampoline once an hour or as needed (we bought a mini trampoline that stays in his room)
  • Wall or floor push-ups, crab walk, or wheelbarrow walking at least four times a day. 
  • Throwing: balls or beans in baskets. Throwing gives the joints traction input. 

  • Twist board 
  • wobble board
  • hammock in his room
  • swinging at playground. 
  • Duration: Any combination of activities three times a day.
twist board from the fitness section at Canadian Tire
Wobble board from Amazon

The sensory diet is a lot to remember. It should be printed out and shared with his teachers who tried to implement what they can at school, as per the request of the occupational therapist consultation through the school. For it to be effective, you will need to implement your child's individualized sensory diet regularly, and for it to be written and supervised by an occupational therapist. Since implementing the diet, I have seen a difference. But to maintain the diet this rigid was somewhat difficult. On lazy days, a great way to implement proprioceptive, vestiublar and tactile input is to take him to an indoor playground where he can run, jump, climb, swing, fall, and crash in a safe place. Many indoor playgrounds are designed to be sensory friendly.

I suspect my child has SPD. What are the next steps?

The first step is to see your family physician for a referral to a developmental pediatrician. You will need to rule out other conditions like ADHD and ASD, both of which my son is also officially diagnosed with. SPD is a condition that is largely misdiagnosed as ADHD and ASD, and has a high co-morbidity rate with the two diagnoses. The next step is to consult with an occupational therapist. They will assess and determine if your child has sensory processing disorder and the severity of it. Developmental pediatricians do not typically diagnose SPD because it is not viewed as a medical condition, yet. Proponents of SPD believe it should be part of the DSM-V (Diagnostic and Statistical Manual or Mental Disorders, fifth edition), but not enough research has shown SPD as a separate medical condition. Currently it is listed as a symptom of Autism Spectrum Disorder. Once your child is diagnosed, the occupational therapist will suggest OT sessions and give you a plan to work with at home. With routine OT sessions and practice at home, your child will be able to self-regulate.

I highly recommend picking up a copy of Raising a Sensory Smart Child. The authors do a thorough job explaining SPD and providing a ton of information on SPD management, other associated conditions, stories, and sensory diet ideas. After reading the book you will feel more confident about dealing with sensory processing disorder. It's a great resource to have on your shelf, and you'll find yourself going back to read it several times.

Do you have a question or comment? Email us or comment below! 

Monday, 18 July 2016

Eliminating Social Stigma of Autism in your Community

One of the first things my mother told me when I shared with her the news of my son's diagnosis was, "Don't tell anyone"

It struck me as an odd response. I thought about those words for some time. The more time I had to think about it, the more unusual and unsettling those words came to be. Why shouldn't I tell anyone? What kind of community, and more broadly, society, am I raising my child in if they are not willing to accept this big part of who he is? I started observing how others reacted in public when confronted with a person with autism. Most of the interactions were negative. It was then that I realized I needed to take a deeper look at the stigma in my com
munity towards autism and other developmental and cognitive differences (ODCD).

I am speaking from a personal standpoint, so I will be addressing the social stigma of Autism and ODCDs in my community. However, you may find this useful to apply in your own community if you find that stigma is prevalent. 

Stigma typically stems from fear of the unknown. The majority of people I have met have not been exposed or educated about autism and ODCDs. Their knowledge of autism is very limited, and they may have only heard of cases of autism that are more severe. They may have known about a person that has been diagnosed with autism but not given the appropriate management techniques, and therefore think it is a condition in which the child does not improve. They may have heard about ADHD in its most severe form, and think the child will not succeed as a functioning adult. Some may have only heard of autism from movies, like Rain Man.

The stigma of autism and ODCDs in the community is a cause for alarm. Because of the stigmatization of mental illnesses in our community, often those parents with children on the spectrum and ODCDs are left out of community functions. Not only do they feel left out because there are very limited, if any, resources to help them connect with others in the community that have similar struggles, but also they are afraid to let others know about their children's diagnosis in fear that their child will be ostracized, looked at and treated differently. What happens next is those families isolate themselves, in shame or fear; possibly both. This type of attitude towards ASD and ODCDs only feeds the cycle of stigma.

How do we eliminate Stigma?

The most effective way to eliminate stigma is education. Yes, it is as simple as that. Exposure and education. A simple way to educate is to expose. Moms of children with autism, do not be afraid to go to those functions you've always wanted to go to. Your presence is educational. Show them the magnificence of your child. Talk about all the skills your child has, talk about what they can do. Point out that autism and ODCDs are not disabilities.Explain to them what stimming is and the function it serves your child.  Do not reduce your child to a label by not taking him/her out because of it. If others ask, do not be afraid to share. If we show our children that we are proud of who they are, they will grow up proud as well. Always remember our spirited children are more than their labels.

Another important reason to go out into the community with your children is expose other parents with children who may be struggling to find answers. What stigma does is it keeps families from seeking a professional opinion and finding help for their children. There is an unfortunate negative association with therapy that I have noticed in our community that contributes to the stigma we are discussing here. To them, therapy means that something is wrong. That as parents, they have failed. This notion needs to be reversed because it is simply not true. Seeking a diagnosis and accessing help for yourself, your child and family is a sign that you are on the right track. By coming to the realization that professional help is needed, you are increasing the chances for success in the future. This is an idea that needs to be shared widely and applied in our community. So as a parent with a spirited child, your presence at a community event may spark a conversation with another parent who sees parallels between your child and theirs. Discussing your spirited child may encourage another family to find answers. You will have done a great service to that child who is navigating the system without a diagnosis, to finally access appropriate care and education.

When enough of us start educating our relatives and friends about our spirited children, there is hope for a change in the community. We will see special education workshops at local schools; teachers will receive better support on how to deal with spirited children if those children receive a proper diagnosis; we will see more support workers at events; Child care at our faith based centres sensitive to the differences in our children.Why? Because when we start showing our community that our children are who they are, considerations for our children will be put in place. These considerations can only be driven by us. And we will not be able to start them unless we start sharing our stories.

So mother, as a matter of fact. I do plan on telling everyone.

Our Story

Some parents are told their child has challenges during pregnancy. Others are met with challenges when their child is born. And some challenges slowly creep up in time, while others are hit with a sudden event that change their family's lives entirely.

Our story is one about a slow surfacing of challenges over months, and then years. Our SC was born full term. It was a normal pregnancy, and an uncomplicated delivery. He was a healthy baby. He was a mellow and happy baby for the first twelve months of his life. He hit his milestones in time and all seemed okay. In his toddler years, he quickly picked up on all of his alphabet, colours, shapes, numbers, with ease.  As a first time mom, I boasted about how easy motherhood is and admired my bright boy's curiosity. I was vigilant in the first years to watch for red flags like eye contact, interest in faces, smiles, and communication attempts. Since it was all there, I thought we were in the 'clear'. I thought we were okay.

Then something changed. At around two years old, we noticed fixations. While other children played in the playground and within acceptable parameters, He would wander off into the parking lot. He would lay down and look at the wheels of strollers in the mall, at home, in the stores. He would line up his toy cars. He became very interested in all types of vehicles. He was more interested in the cars in the parking lot of the playground than playing at the structures. Well meaning friends and relatives brushed off our concerns saying, "Some boys just love cars!"

Although he had a large vocabulary, all was lost in articulation. I was the only person that could understand him. This was our first reason to reach out to early intervention. The speech and language assessment concluded that he had an expressive and receptive language delay. After the block of sessions, the speech and language pathologist (SLP) had reason to think there could be something else going on. I had already asked for a referral to a developmental pediatrician at this point.

At age three, he was unofficially diagnosed with ADHD. Three is too young for a formal diagnosis, so we were told to wait and try some behaviour modification therapy in the mean time. I still was not satisfied so I went for a second opinion. The second developmental pediatrician said that my puzzle child has ADHD, and started listing of medications. He was four. She dismissed our concerns about autism and did not do a formal ADOS assessment. She said, "He could have autism, but let's focus on ADHD first". Then off I went for a third opinion.

We were referred to a team of specialists at a research hospital. We had faith that they were better equipped to see the full picture of our child's challenges. Having already been diagnosed with ADHD from the previous pediatricians, they took a closer look at our concerns about autism. After the ADOS assessment, he was officially diagnosed with high functioning autism at age five. What's interesting is how irregular his responses were. There were times when he met the required tasks with little effort, and others where he did not attempt. His pediatrician noted that she understands why the other physicians did not look into diagnosing him; he did not fit the criteria as easily as other children do. Our child was a puzzle.

Although I knew in my heart that he will be diagnosed with autism at some point, the actual diagnosis hit me like a ton of bricks. I left the office with feelings of both relief and a heavy heart. Relief that I finally have an answer, and a heavy heart of what this means for my son's future. My eyes welled up with tears the moment I stepped in my car. My eyes did not dry until I got home to see him again. I had to be strong for him.

It has been a year since his diagnoses. We learned so much in that year and continue to learn every day. Some days are painfully challenging, and other days are fine.

The thing about this journey is it teaches everyone that it touches. I'm still learning patience, I'm learning to find comfort in our new norm. 

Friday, 8 July 2016


Welcome to The Spirited, a special needs parents' resource website.

Parenthood is already one of the most tasking jobs one can have. Physically, emotionally, and mentally. Parenting a spirited child can be even more tasking. Many parents suffer in silence as they try their all to give their child the best possible outcome. Often we forget ourselves in the process of giving everything. The feelings of isolation, depression, inadequacy, and the on going question, "could I be doing more?" are familiar to us.

This website was created as a space to reach out to those who feel the burden of parenting a spirited child. We will regularly post advice, resources, tips and stories about parenting spirited children. Our aim is to provide an online community for parents of spirited children as well as be an educational platform.

What is a Spirited Child?

A spirited child in this context is defined as a child with special needs. Children can be spirited in very different ways. My spirited child (SC) has Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD). Spirited children think differently, act differently, and see differently. They are not "disabled", they are not less. They often possess a gift or an impressive skill set. In this website you will find posts about defining those strengths in your child and many other helpful tips.

What will I find here?

  • Educational resources
  • How to navigate the system after a diagnosis
  • Anonymous open letter segments 
  • Behaviour management techniques
  • Book reviews
  • Current research 
  • and much more!