Having your child involved and included in the school community is a top priority for many parents.
Jessica Bosma is a teacher and parent of a medical child with insight into addressing inclusion in the school system. Here is her wisdom:
I am a teacher, but more importantly, I am a mother. Within the last year, I became the mother of a child with special needs. Throughout my career, I’ve worked with many different children with a wide range of needs, and have always held a special place in my heart for these children and their families. As a bystander to their struggles in the education system, I’ve always admired the strength of these families. Until I had a special needs child of my own, I had never experienced the pain that cuts so deep into your heart when you feel you are helpless to your child. Much of the journey of a special needs child is put into the hands of others. I strongly believe that the one place where this journey can be heavily influenced by the parents – with a deep vested interest and strong collaboration – is within the education system.
On February 28, 2012, my then-15-month-old son Oliver was diagnosed with type one diabetes. I cried with fear for the future and the great unknown.
I immediately asked myself, Would my son still have the same opportunities as the other kids? Would he be seen as “different”? What would his quality of life be like? The teacher in me worried. Would he be included? And what does inclusion mean for him once he enters the school system?
I strongly believe that one place where this journey can be influenced by the parents – with a deep vested interest and strong collaboration – is within the education system.
A short six months later on August 12, 2013, at 21 months old, he was diagnosed with a brain tumour. Now I was plagued with even stronger concerns about his future. What if he never walks again? What if he needs a feeding tube? What if he can’t breathe on his own? What if he is severely delayed developmentally? Would he fit in with his peers? Will he be included in a regular classroom? Will his school system support him? Will they support our wishes for him? Will he receive all the support he needs? These thoughts consumed my mind. Even though my young son was not yet of school age, I wondered the same things about the daycare he would attend once I returned to work. For the first time ever, I stood in the shoes of all my past special needs parents, and suddenly the topic of inclusion became clear to me in a whole new light. I know myself as a teacher, and I know that personally I would bend over backwards for any one of my students.
I also know that there are some teachers who wouldn’t do the same. So what if my son has one of those teachers?
Below, I briefly discuss the nine areas that I believe are very important when working on the inclusion of your child in the school system. Of course, nothing is written in stone and this is only my opinion as a teacher and a parent of a special needs child.
Get involved, and know everyone who will be working with your child. Collaboration is key. You do not have to like everyone in order to collaborate. Make phone calls, write emails and make yourself as visible at school and in the classroom as possible. Offer to help when it is needed and keep in contact with your child’s teacher and school employees that will be involved with your child.
The scariest thing as a teacher is when a child comes into your class with medical or special needs and you have no knowledge on how you can best support them. Teachers often “code” special needs children as part of the process of getting support for them. Codes are broad and they do not define the child. A code does not help me as a teacher plan for that child, as every child is so different. Set up meetings with teachers ahead of time, ask to speak at a staff meeting if you’d like to educate the whole staff, meet with teachers and principals consistently and provide support material like books, pamphlets, websites – anything that will help educate us on your child’s needs. The more we know as teachers, the more we can learn, and the better we can support your child.
- Have a vision
Know what you want for your child. Create a vision and make a plan, long term and short term. Write it down, document it and keep record of everything that is important to you. Celebrate when your child achieves goals. Most importantly, share your vision with your child’s teacher so they can work together with you to achieve it.
- Seek routines and consistency
Routine and consistency in school is key to making children feel comfortable and secure. They can help children work on their goals, and if you can advocate for your child to have supports in school, they can work towards a developmental goal. It is important to continue to work on this at home. There is nothing more frustrating as a teacher then having a child with consistent setbacks because they are not continuing the work at home. It takes a village to raise a child – keep it consistent.
- Use inclusive language
Inclusive language is delicate, but it is very important. The way that you speak to your child and about your child is the way their teacher and classmates will speak to and about them. Speak to your child the way you would speak to any other child – your child is not defined by their differences. Choosing the wrong words can hurt your child and make them feel like an outsider. Inclusive language strives to promote all people, regardless of difference, as full and valued members of society by selecting vocabulary that avoids exclusion or makes one feel less valued than others. If you hear your child’s teacher using language that is not inclusive or sets your child out as different, point it out. Remember that teachers are often multitasking, working with many different children, sometimes we unintentionally slip up and we won’t be hurt if you remind us of important things like this.
No one will advocate for your child the way you will. Teachers and principals will help – they know the paperwork and they know the ropes, but you know your child. If you want an assistant for your child, fight for it; if you believe your child needs extra supports or services, fight for them. Decide what you want for your child and be their advocate. The school system can be very difficult and tiring, but let the teachers know what you want and what you’re trying to achieve and don’t give up until you get it. Still, be reasonable in your requests. It is always attainable; it’s just a matter of advocating for what you want.
- Don’t be afraid
The school system can be scary, especially if your child is just entering kindergarten. You will probably be full of questions and concerns, but don’t be afraid. Teachers are there because they are invested in your child. We genuinely want to help and we want to make your child feel included and have the very best possible experience. Don’t be afraid to let go of some control and let the experts at the school help, and don’t be afraid to let us into your world. Understanding your daily struggles and your concerns will help us create a better plan for your child.
- Make your child an equal
If you expect others to treat your child as an equal, then you need to do the same. As a parent, I know I would never intentionally single my child out or be overbearing, but I also know that it can happen without realizing it. Don’t intervene unless it is needed; let your child interact with their peers and allow them to take some falls and to feel disappointment. Let them celebrate success without their parents holding their hands. This is important for all children, especially yours. It is critical for emotional and social development and it is something that all children experience. When they do something great, let their classmates celebrate with them and allow your child to do age-appropriate activities within their classroom. If this means letting go and watching from outside the window, that’s OK! By doing this, you are putting your child on a level playing field with their classmates. They are equal, regardless of what their medical condition is.
- Use the supports you are given
If your child is given an assistant, offer to work with them and teach them about your child. Meet with OTs, speech therapists, physiotherapists, counsellors, teachers, principals and inclusion consultants. Take all the support you can get and use it to the best of your child’s advantage. Remember they are there for your child, let them know what you think is working well and where you think it could be better or different. Your child is going to spend 13 years in school and even more if they continue on to higher education. School should not be something that is feared – you should love your child’s school and your child should love school.
I hope that I have captured some key points to help you as a parent or guardian feel better about entering your child into the school system.
My experience with Oliver has changed my opinion on inclusion and the ways in which parents and teachers can work together to provide the best experience possible. Of course, everyone will have a different experience, but as a parent, if you dive in head first with a clear vision of what you would like for your child, you will experience success and your child will be happy – they will love school.