Author: Karen Copeland
This is a post I have been wanting to write for a long time now. Most of you will not be surprised this post is about the challenges families face with their children who have special needs being included in the public education system. How we are simply dropping our kids into regular classrooms without ensuring there are adequate supports in place to experience success. That our government expects and mandates all kids to be supported while failing to provide enough dollars to provide that support. Yes indeed, that is an example of the illusion of inclusion in our public education system.
But this post is about so much more than that. It is about the illusion of inclusion, not just in the education system, but in our communities as well. It is about the fact that parents who have children who require extra support continue to have to stand up and make noise to get even the most basic considerations. It is an added insult that the very systems that proudly proclaim they believe in inclusion do not have the courage to step up and defend the rights of the very individuals they say they “include”. Instead, they put parents in the position to have to advocate yet again for awareness, understanding and acceptance of their children in their community. And then, when we do so, we are told we are being “too sensitive”, or that uninformed exclusionary comments are necessary for discussion and debate, further solidifying and entrenching the idea that our kids don’t belong.
I recently wrote a post in response to some comments that were being made in my community, comments that generalized all kids who have special needs as less than, as children who did not have the right to access programs and services like all others, but who required special schools. I had a message from a good friend after I wrote the post. In it she shared:
“I hate that we constantly have to defend our kids rights to an education not just to educators but to other parents. Your blog post about what you don’t see struck a nerve and made me mad that you felt you had to even tell people about what they don’t see. It shouldn’t matter! Your son has rights, he’s a human being and a kid. It all just pisses me off.”
Well my friend, I am pissed off too.
Looking at comments on articles relating to inclusion, we parents often get told we have no understanding of what it is like for the ‘typical’ kids, that we are somehow oblivious to our child’s behavior. We get portrayed as people who simply throw our hands up in the air and rely on others to “raise” our kids. That we are under the illusion that our children should be included in regular classes all day, every day; that we have bought into the fallacy of inclusion. We are provided with condescending tips on how to conduct ourselves in a meeting with professionals, as if any potential success in the meeting is dependent on the behavior of the parent and the professional couldn’t possibly use any of these tips themselves.
You see, many parents are fully aware that their child is struggling and they are trying everything they can to get their child help. Most people won’t see it, but so many parents are trying everything they can, but system navigation is complex and you often end up on wait lists. Or the services your family desperately needs are not accessible because your child doesn’t have the correct diagnosis. And guess what? Most of us have a great amount of empathy for the parents of typical kids, because we know it isn’t easy to have our kids in their class. We KNOW this.
I promise, we don’t send our kids off to school in the morning saying “see who you can disrupt/hit/bother today”. We feel guilt if our children hurt other children. We feel shame. We feel like crap parents too. We don’t need to be told this. We already KNOW. But here’s the thing. We are trying our best to teach our kids what they need to learn, to respect others. We want our kids to succeed too. It will look different from other kids, but it is still very much possible. We believe in possibilities. We are not ready to quickly write off our child when he/she is six, seven or ten. We know if we do the work, if we get the support that is needed, our child can and will succeed. How many people would write off their own child if he/she was different?
When a parent is perceived to be indifferent or giving up, perhaps this is the time to start asking some questions about what their journey has been thus far. I wonder how many times they have asked for help and been denied? How may times have they been told their child would be supported, but there is no follow through? How much judgement have they and their child already faced over a period of years? Or perhaps they are new to this journey and don’t know yet all they can do. Perhaps they are grappling with the idea that what they envisioned their life to be is going to look much, much different. You won’t know unless you ask. So ASK.
Now let’s talk about how we get to be known as “angry” parents. We are told we need to stay calm and polite in meetings in order to be respectful. The challenge is that these very systems have set us up and created us to be these “angry parents” by virtue of the fact that we have had to fight so long and so hard to get our children and families even a fraction of the accommodations and support we need.
That moment when you are sitting across from someone, and they tell you how much they appreciate your advocacy, but their actions don’t match their words…this is the illusion of inclusion. Ask any parent of a child who has special needs if they have experienced this. We are told we are valuable partners when it comes to creating plans for our children, and yet how many meetings are held without us, where decisions are made and then simply communicated or reported out. Or not. Oh you will hear there are policies and guidelines in place that ensure parents are included and informed, but honestly? Go ask the parents about their experiences with this. You might be surprised.
In regards to the idea that parents only have one vision for what inclusion is, I say baloney. Talk to any parent who has a child with special needs and I guarantee that inclusion looks different for each and every one of them. In our own family situation, our son now learns at home, repairing the years of damage that have taken place because of the illusion of inclusion in public bricks and mortar schools. I confidently say our son is included in our community more now than he ever was before. He is learning that he can be successful, that he is valued. I don’t have to fight for him anymore, I don’t have to stand up and advocate for his worth. He is more accepted by his friends now than he ever was before. Why? Because they get to see him for who he is, not the behaviors they saw in the classroom.
Meaningful inclusion looks different for everyone. It is about discovering what works best for each child – what are the meaningful and relevant goals to be achieved, then designing / establishing a program to support this. It is about recognizing and honouring the strengths and challenges of the child and family and figuring out what works best for them. Meaningful inclusion requires us to sit down and have a good dialogue about what is needed, instead of simply assuming we already know.
This doesn’t apply just in our education system, it applies in our communities as well. How easily are families who have kids with special needs able to access parks and recreation programming in their community? How do faith communities include and accept families? Do families feel included in our communities? When they read the local paper, do they see support? or derision? Have you asked them?
So now that I’ve ranted…what do I think we can do?
Well, as Inclusion Consultant Shelley Moore shared with me, we find the people in our systems who GET IT. We embrace them, learn from them and support them in their efforts. Because goodness knows they need the support too.
It is very often these champions who are in our schools and workplaces every day advocating for our kids by sharing their viewpoints and perspectives with colleagues who may not yet have heard them. They are the teachers who bring forward ideas for change, who encourage different ways of thinking.
I think about Ian Landy, an Administrator who has a child who experiences challenges. He has actively made self regulation and understanding anxiety the main prioritities in his school. He shares his learning and experiences freely and openly, so that others may read and begin to think “hey, I never thought of it that way before, maybe I will try that”.
I think about Sarah Garr, who shared her powerful story about her school experiences and how she had teachers who chose not to give up on her. Watch her TEDx Talk What is Success, it is well worth the five minutes of your time.
I look to the many educators and community professionals I have connected with over the years, and how they have not been afraid to stand up and share their belief that ALL children matter. These champions stand alongside families, showing us that we matter too.
That my friends, is no illusion. This is inclusion. In these pockets, it is real, it is happening.
Now let’s get out there, find these champions, embrace them and become stronger as a result. Will you join me?