Thursday, 25 August 2016

How to Explain Spirited Children to Other Children

I see those uncomfortable glances my child gets. I see your child playing next to mine, and I'm waiting for the words to spill out of your child's mouth, "What's wrong with him mommy?"

The next time we meet, I sense the tense atmosphere when your child has been told something about mine and no longer acts or talks to him like she used to. I don't know what you said specifically, but whatever it was, it wasn't the right thing. You may have meant well when you told your child that Frank has autism. But to a child, they don't know what to make of those words. To a child, they hear "he has something, be careful"

To the well meaning parents who wish to explain to their children the differences other children have, this is how I wished you would have explained:

                                                                   --------------------

When Sally comes home from school one day and tells you that a student in her class flaps his hands and makes loud noises, pause for a second. It's tempting to respond with, "Maybe he's autistic" and go about your day.

When you see a child following Maya around and copying her every move but unable to verbalize she wants to play, then your little Maya tells you, "Mommy she won't leave me alone!" pause for a second.

When you're visiting a relative and their child with autism is repeating scripts and pacing, Your son Rob will ask you about it. Pause before responding.

                                                                       ----------------

To Sally, every child has strengths and weaknesses and are unique. Do you know the student's name in your class? What else does he do? Have you tried to talk to him? Learn more about him. He may act differently, but he is still just like you. He has interests just like you. He likes certain foods and can't stand other foods just like you. He may do things differently because his body and mind function differently, that's okay. He's in your class because he's capable, he's smart. He's someone worth knowing just like the other students in your class. It may be harder and you may have to put in more effort, but he deserves a friendship and an equal opportunity, too.

To Maya, this is a friend who wants to play. She may not be able to tell you, so she copies you. Some kids can't use their words to tell you they want to be your friend, and that's okay. Everyone communicates differently. You may still talk to her, she might understand you.

To Rob, your cousin scripts and repeats, he finds it comforting. Everyone finds comfort in different ways, this is your cousin's way. Try talking to him. He might not look at you when you're talking, but he hears you. He likes to play with you. Work on building a friendship with him even if he does things differently. Everyone's brain works differently, and because of that we'll all act and see things differently. This doesn't mean you don't have similarities, you'll find that you're more similar than you are different. You may find he will teach you a lot you didn't know.

                                                                     -----------------

Think about how you'd answer if it were your child. Phrase your explanations in a way that doesn't emphasize the differences. This only alienates that child more.  Put the magnifying glass on all the similarities your child has with that the person you're talking about. When you bridge the gap using similarities and speaking of the person using positive words, you will teach your children acceptance and tolerance of differences.

So the next time you're in a playground and your child looks at you with puzzled face about the words or actions of another child, pause for a second. Ask yourself, what if this was my child?







Wednesday, 17 August 2016

5 Tips to Reduce Stress for Special Needs Parents

There's no doubt that parenting a spirited child is stressful. Studies have shown that parenting a child with special needs, particularly autism, causes the same stress combat soldiers experience. Social experiences, inadequate professional care, and child behaviour contribute to the stress parents feel on a daily basis. We often stress about their future. We wonder if their challenging behaviours will be outgrown or develop into bigger ones. We worry about their safety constantly. By mid day, we are exhausted and have used all the patience we had. We struggle just to get to dinner time, and then prepare for the bed time battles and all that in between. By the end of the evening, we barely have enough energy to recharge.

Because parenting a spirited child is exhausting, we regularly forget ourselves in the process. This is what builds up stress over time. I won't go into the details of how detrimental chronic stress is to your health. It is an issue that needs to be addressed for parents of special needs children. Our children need us. We are their biggest support system. If we neglect ourselves, we won't be in our best shape to care for them. This is why it is essential to actively look for ways to reduce stress and recharge.

Here are a few ways to help you de-stress and recharge:

1. Find respite care. 

I can't stress this enough. I put this off for myself for a very long time. But after a few exhausting weeks of summer, I realized I need it more than ever. If you are in Ontario, find respite care at www.respiteservices.com

2. Pursue A Hobby. 

Find one activity you are passionate about that is not related to your child. You may not have much time to dedicate at first, but if you can find a hour once a week to do something you love, it boosts your confidence and helps reduce stress levels. Give yourself a chance to define your interests and become a person.

3. Therapy 

We are immersed with the idea of giving our children all the therapy they need, that we don't realize we need it too. Having a child with special needs is a challenge that a therapist may help with. They can help you sort out your feelings, the guilt, or struggle you face internally.

4. Pamper yourself

Whether you get a facial, your hair done or a massage, do something special for yourself once a month. Carving out that time in your calendar for yourself will give you something to look forward to on those stressful days. Schedule those days on the day your child is with respite care.

5. Socialize with others who understand 

I found that having a friend with similar struggles helps. Parents who struggle with similar issues can exchange ideas, advice and commiserate. Their empathy is genuine as well as their advice. You can share your issues with a family member or friend that don't share your struggles, but sometimes I found I was met with silence, or well meaning advice that was irrelevant or even offensive. Find a parent support group within your community. A great place to start if you live in the Toronto area is the Geneva Centre for Autism www.autism.net. There are ample amounts of Facebook groups as well that you can join, including our new Facebook Page.


Lastly, start slow. It can feel unusual to do something for yourself. Expect a certain amount of guilt, but don't let it deter you. Remind yourself that you are taking care of yourself so you can better care for your child.

Thursday, 11 August 2016

Five Tips on Parenting the Spirited Child

Natalie is a mother of two spirited children, six year old Mark and three year old Sarah. Between Mark's intense meltdowns and Sarah's stubborn personality, Natalie's daily routine feels like a battlefield. Like Natalie, other parents of spirited children struggle just to get through the day. Desperate for solutions, parents of spirited children scour the internet, read countless articles, attend seminars, webinars, and probably have a dozen parenting books on their shelves. Still, there seems to be no solution.

Despite the numerous reminders, taking away privileges, threats, time outs, and even yelling, nothing seems to phase Mark. Natalie starts to question whether Mark is even aware of his actions and whether or not she should discipline him. Parents of spirited children often wonder if discipline tactics used for neurotypical children will work on their children. They wonder if there is a different method of discipline designed for their child's temperament and condition. With the vast and overwhelming amount of information on child rearing and discipline, it is hard to filter out what is applicable to your child.

After reading numerous books on discipline, both for neurotypical children and spirited children, I found striking similarities and the overall same messages. The reality is, we try to use different methods simultaneously and this results in no effective outcome. Natalie sometimes uses time outs, while other times she takes away privileges. The consequences are all over the place. Below you will find the five tips on getting your parenting game refocused.

You're the level-headed boss

You will find in most parenting articles and books, there is an emphasis on laying the foundation and teaching your child that you are the decision maker. This helps the child feel grounded and provides them with a sense of security and structure. Some children will push to find the weak spots, and will often succeed with their relentless efforts to achieve their goals. Being the boss is not akin to being authoritarian. It simply means to calmly but firmly keep your word.

Make the Rules visible and Clear

All children need reminders of what the rules are. Have those rules visible to your child with images to help them visualize. Talk about the rules. Have them repeat them to you. Once the rules are learned, make the consequences clear. If they are old enough, sit together and come up with a list of consequences together. When they are part of the process they are more likely to comply. When the consequences are vague, children tend to try different ways of getting around those rules. Make the consequence fit the crime, and if possible make them natural consequences.

Consistency

Spirited children often push further and have intense emotions. Because of this, tired but well meaning parents sometimes give in to some demands, while other times we keep firm. These mixed messages confuse our children. This is a common reason why we find it so difficult to discipline. Our children do not know what to expect, so when they are met with a "no", they are more frustrated than they normally would be. Children on the autism spectrum and with ADHD need structure and consistency to get them through their day. Always follow through with consequences in a calm, but firm manner.

Predictability 

Try as best as you can to share the daily routine with your child. A visual schedule for the day and week helps calm an anxious child. Spirited children thrive of predictability. Give fair warning when there will be a change. Sometimes change is met with frustration and anxiety from your spirited child. It helps to create a social story about dealing with change. Our spirited children live in a very unpredictable world, and this gives them quite a lot of anxiety. While we may not realize it, we have to be sensitive to that and help them through it. Creating a predictable space for them helps them cope better and minimizes their frustrations. They can better manage their emotions when they know what to expect.

Verbalize their Feelings

It's important to talk to your child about their emotions to reaffirm to your child that you see their anger. You see their sadness. I find that when my spirited child is angry, if I start off with a defense, "I gave you a fair warning", he responds with more anger. When I respond with, "I see this really makes you angry", his reaction turns into grief rather than anger. He is quicker to calm down, most of the time. When you show your child that you see their emotions, they feel heard.



Finally and most importantly, forgive yourself. Sometimes we will make mistakes. That's okay. It shows our children that mistakes happen even to adults and it's how we handle them is what matters. If you lose your temper, apologize and explain. As parents of spirited children, we are constantly under stress of making sure our children overcome the challenges they face and come out strong and successful. Our determination to help them succeed and thrive is the motivating factor for proper and effective discipline.  There is no parent that enjoys disciplining their child. We often ask ourselves, am I being too harsh? She's crying too much, am I damaging her? Maybe I should have let this one go...but we have to remind ourselves that while disciplining is sometimes painful, it is always for the benefit of our children. 

Tuesday, 2 August 2016

Neurodiversity



It goes without saying that we are all different. We have different physical features, different personalities and traits, different beliefs, sexual orientations, opinions, IQs, and different ways of thinking. So why then do we pathologize neurological differences? Why do we treat conditions like DHD and autism as diseases that we need to cure? Sure, these conditions pose challenges to those who are affected, just like a person who has poor eyesight and a short person is affected. We all face challenges in different areas; our strengths and weaknesses are all different. There is so much variation in all facets of our lives. This is why I strongly believe that we need to push forth the idea of neurodiversity into our mainstream thinking. 


What is Neurodiversity?

According to John Elder Robinson, author of My life with Aspergers, "neurodiveristy is the idea that neurological differences like autism and ADHD are the result of normal, nature variation in the human genome." This idea profoundly changes the way we view conditions that were traditionally pathologized. Although it is not widespread or widely accepted, it is increasingly supported by science. He goes on to say, "...science suggests conditions like autism have a stable prevalence in human society as far back as we can measure. We are realizing that autism, ADHD, and other conditions emerge through a combination of genetic predisposition and environmental interaction; they are not the result of disease or injury." 


Why is accepting Neurodiversity important?

Once neurodiversity is accepted as mainstream thinking, it will bring awareness and acceptance to the neurological differences spirited children and adults have. It will essentially "normalize" this variation. The feelings of shame, isolation, and low self-esteem that our spirited children so often experience will be minimized as a result of widespread understanding that no two people are the same. This widespread understanding that there are differences in our how our brains are wired and it is simply a matter of natural variation in our genes will empower those who feel isolated, and incapable. Once this notion of "normal" is eliminated, our spirited children will be better understood and accepted as the bright children that they are. 

How do we promote neurodiversity?

It's simple. Talk about it with others. If you're an educator, introduce neurodiversity to your class. If you're a parent, talk about it with your children. Talk to your co-workers, your friends, and your family. If a well meaning family member talks about curing your spirited child with essential oils or a treatment they heard or saw in an ad, gently explain neurodiversity as a concept that embraces your child's neurological differences and that they are not ill, not broken, not diseased. Word of mouth is a powerful tool we forget we have. This is a simple way to make changes around you on a micro level. 

What neurodiversity is not

While neurodiversity entails acceptance of neurological differences, it does not mean treatment and therapy are no longer needed. Just like a person with poor vision wears glasses, so too does a person with autism need therapy to strengthen their weak areas. Therapy and seeking treatment does not equate to the idea that something is broken and needs fixing. This idea is false and needs to be debunked in order to change our society's perspective on seeking help when it's needed. There is nothing wrong with seeking professional help. Just like an athlete goes to the gym to strengthen their muscles. There is nothing innately wrong with their muscles. Their muscles are there, in all their form. Training to strengthen is something we do as humans; we strive to be the best version of ourselves. While it's important to embrace your spirited child's neurological differences, you also need to give them the opportunity to be functional, happy individuals by providing them with training, therapy, and education that helps them get there. 




Monday, 1 August 2016

Seven Worthy Traits


At six years old, Isaac did not play like the other children in his class. He was perfectly happy playing on his own while the other children played tag and hide and seek. Alone with his thoughts, he would play out scenarios he has seen and imitate scenes from his favourite shows, seemingly blind to his surroundings. Onlookers stare with concern. Isaac's mother sees this. She sees the other children's puzzled faces as they look and mumble. She struggles with their uninformed gazes and worries about her son. How will he be treated when I'm not there? What if they taunt him? What if they hurt him? 

What they don't know is, Isaac is a remarkable young boy who has an admirable lists of traits. Not only can he list all the different names of train engines, and is beyond his years academically, but he has a special type of capacity in his personality that is unique to his autism. As parents and educators we tend to focus on what went wrong. This overshadows all that is right. In an effort to bring solace to those parents struggling with their spirited children, it's important to remind yourself of the unique traits your children has that a typically developing child may not.  In many discussions with other parents of spirited children, I noticed a trend of traits that spirited children have.

Honest

If you ever need an honest opinion, ask your child. I have found that my child with autism will give me a raw and literal opinion. He tells it like he sees it, which is a typical trait people with autism have. While it may not always be socially acceptable to be as honest, I see it as a beautiful characteristic. In a world where everyone is hypersensitive to criticism, the social sphere seems to have developed a thick layer of delusion and sugar coating. People with autism can break that barrier and balance out this unnecessary need to put on a show to be accepted. 

Affectionate and Caring

Six year old Gabriel has high functioning autism, ADHD, and a host of other diagnoses. While he may struggle with keeping up in social play with other children, he will immediately tune in and inquire when someone is hurt. His concern for others' well being and happiness far surpasses the other children in his class. When someone is unhappy, he will be the one to talk to them. If there is a small child crying in the booth next to his at a restaurant, he is concerned for that child. "What's the matter with her?" "Is she okay?" If his brother is hurt from his own actions, he will be upset that his actions hurt him. This is one of the most common misconception about autism: Lack of empathy. On the contrary, there is often more empathy and affection than those typically developing peers. While their presentation of their empathy may be different, it is still present. In Gabriel's case, he is consumed by others' emotional volatility and wants to understand it to heal it. It's the type of characteristic our world needs. It's the type of trait that will drive a person to make a change to heal the distressed and to come up with ideas to help the hurt. Since Gabriel may not have the ability to sit through someone talking about themselves for long, his empathy and interest in others' emotions is admirable. 

Brave

Nine year old Aidan has no problem saying no to children. He doesn't feel the peer pressure and social obligation that others feel in social situations. If he sees a transgression, you can count on him to voice his concern. If his older friend is being bullied, he will stand up for him without thinking of how it may affect him. This is the type of bravery that a child has when they are not tied down to social intricacies and rules. As a result, some children may struggle to make lasting friendships. This type of bravery is important however. When it is honed and used correctly, spirited children who possess this type of characteristic are the most loyal of friends and can be successful adults with interesting insight.

Another type of bravery that you see in spirited children, particularly the sensory seekers, is fearlessness. This is the hardest one to accept as a parent because you are constantly worried about their safety. But in a safe environment, they can practice their fearless attempts to contort their body, jump from heights, fall, crash and tumble. While some children will hesitantly go down a tall, steep slide, my child will go down head first with exhilaration in his eyes. This type of bravery and fearlessness can be seen as a trait that can be beneficial for many reasons. Their ability to push further than others can be useful for certain occupations and exploration. 

Curious and Observant

A curious child is a learning child. When my spirited child puts his sandwich in his juice, he learns that he can no longer eat it and his juice doesn't taste good. Some of their curiosity may be irritating and sometimes disastrous, but it is important to give our children an opportunity to exercise curiosity within boundaries. My rule is as long as he doesn't hurt himself or others, and break or damage anything, all is fair game. Now you might be thinking, well every child is curious. The type of curiosity a spirited child has is different in nature. It's more intense, more boundary pushing, and often creative. Spirited children may often focus on details that others miss and then question those details. My son's periphery vision is superior to ours. He can tell me a host of details I miss in any given scenario. If George brought a different bag to school, he will ask about it. He will notice if you cut your hair, nails, or whitened your teeth. Then he'll ask why and how. This curiosity helps him understand the world he lives in, a world he feels doesn't understand him. This is why it's vital that we're patient, kind and understanding even when as parents, we don't quite understand them. 

Creative

Spirited children have a unique perspective. Their unique perspective gives them the ability to think in unconventional ways. Because they are already "outside the box" so to speak, they have that creative advantage. I asked my son to draw me a picture of a slide. The way he drew it was in his own point of view while going down a slide, rather than an actual drawing of a slide from the point of view I would have drawn. When children start conventional school, they often lose their creative ability. It needs to be nurtured and applauded by including their ideas into their work and play. This gives our children a sense of empowerment and reinforces their creativity as something to embrace. 

Logical

Spirited children who have autism are known to be logical. They try so hard to connect the dots and make sense of an ever changing and fluid environment. Being logical provides them with a sense of comfort in this chaotic world. Being logical enhances your critical thinking and problem solving skills. It is impossible to convince my spirited child that there is a flying monkey in his closet because he knows it is simply not logical. What does the monkey eat? Where does he poop? How come he doesn't make noise? Why would he even live here? So many good questions. Some spirited children are logical to a fault. It hinders their ability to understand social nuances like sarcasm and body language. That's perfectly okay. Their ability to be logical and problem solve has its many strengths in school, work, and daily living. 

Generous

There was never a time I asked my five year old for a favour that he denied. When his younger sister asks for a toy he cares about, he hands it over even if he still wanted to play with it. If I asked for a piece of his cookie he'll give me the bigger half. When it's time to sort and donate his clothes and toys, he chooses his good toys to donate. Not only is he generous with his belongings, he's never short on love and affection. He'll never pass on an opportunity to hug or cuddle.  When I was visiting a friend with a spirited child, her son happily shared his favourite stuffed animal with my younger daughter and shared his Lego with my son, even though he was playing with it. Unfortunately, this characteristic is easily taken advantage of by other children. Particularly in school, generosity can be seen as a weakness and manipulative children may prey on it. This is why it's so important to teach our spirited children to be aware to protect themselves by teaching them how to identify if someone has ill intentions, all while preserving this amazing trait.

As a parent of a spirited child, it is easy to be pulled into a spiral of dark emotions and self pity. It's also completely normal and part of the healing and acceptance process. Always remember to be kind to yourself and remember that under the hard shell of these diagnoses and difficult behaviours, are bright and incredible children. Always remember that.



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:

Oral
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. 



Tactile
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


Proprioceptive
  • 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. 


Vestibular
  • 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.


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