This is a difficult letter for me to write. No one wants to be “that parent” and I’m aware that writing this could put a target on my back as being such. So I hope that you will keep that in mind as you read the rest of this, as it is important enough for me to risk that distinction.
On one hand, I appreciate the first steps that were made and want to encourage you to continue making more steps towards inclusion at school events. On the other hand, I don’t want anyone to think that they have already reached their destination. The first steps were made, but there is a long way yet to go.
Imagine your child was invited to a birthday party. The birthday child doesn’t really know (or like) your kid, but had to invite them to the party because everyone had to get an invitation. At the party, no one wants to talk to your child. Every other child gets cake and ice cream, but your child does not. So, your child gets to watch all of other kids enjoying themselves. Does this sound like a party you want your child to go to? Would you choose to go to this party?
Now let’s say that the birthday child’s parent asks why your child never comes to these parties, and when you tell them, the parent assures you that your child is welcome and wanted and that she will go out and purchase a treat for your child to enjoy if they come. You have no reason to doubt the sincerity of the parent. So, you agree.
You get to the party, hoping it will be different than imagined. Again, no one wants to talk to you or your child. The few who feel obligated to do so smile and nod politely, quickly not knowing what else they can say so they excuse themselves and leave you alone again in a party no one wants you at. All the other kids have cake and ice cream, but the treat for your child is nowhere to be found. Your child is getting upset, again, watching all the other kids eating their treats, so you inquire about the treat for your child and are told “Oh, yeah, we left your child’s treat in the car. Here are my keys. Leave the party, go out to the parking lot, find my car, and the treat is in the trunk.” Does this sound like it’s the kind of party you want your child to go to? Do you feel welcomed and wanted or more like a burden and afterthought? Can you think of any easy ways that the host could have made your child feel welcomed?
If you don’t feel like these are the kinds of parties that you would like to take your child to, you have an idea of my family’s feelings about my daughter’s kindergarten ice cream social. Now imagine that every birthday party/school social gathering/extracurricular activity is like this.
I understand that if you have never lived 24/7 with special needs kids, you wouldn’t really “get” what that means. I didn’t really understand it either until it became my life and every day became a question of “do we go out and challenge the world today, or do we stay home and recuperate from the last time we went out to challenge the world?”
Most times, special needs families are just exhausted and it’s not worth it to them physically or mentally to try to change things if they can instead choose to not go to any functions that were not specifically created with their needs in mind. Unfortunately, this ultimately hurts everyone involved.
It hurts our families because we do not get the same opportunities that yours do. We do not get the opportunity to join clubs that focus on language development, as we may have language impairments in one language, and the club is not able to accommodate teaching a second language if a child doesn’t fluently speak their first language. There were no clubs that I could see which would be appropriate for a 5 year old girl who doesn’t speak on demand to join. Where are the art clubs? The dancing clubs? The music clubs? Or even just a club that lets members watch a different movie together every week?
It hurts your families because you are never exposed to people who live different lives, and thus either become afraid of us or feel that we are somehow ‘lesser’ instead of different. And honestly, the feeling of fear is somewhat justified. We are all afraid of what we don’t know. It also doesn’t help that in general you will find that your offers of inclusion are looked at credulously because it’s something we’ve all heard before.
Unfortunately for us, we are inconvenient and we are aware that we are inconvenient. When things become inconvenient, they are generally brushed aside and forgotten about, in lieu of the more convenient and satisfying options. What starts out as a great attempt at inclusion quickly falls flat on it’s face as people realize how much work is actually involved. Work that you, as outsiders, can simply choose to walk away from. Work that we, as families, are required to do every single day.
We know how tiring it is, but we don’t have the option of not doing it. We also do it every day, not just for special occasions. And yes, that makes us tired and it can make us irritable. It doesn’t mean that we don’t appreciate the efforts that you make, we just know that you won’t have to deal with the repercussions that come later when things aren’t done well. As special needs families, we will need to work to improve our own attitudes towards people who are genuinely trying to include us but don’t know how, so that we are offering helpful advice for improvement instead of biting criticisms of all the things that were done ‘wrong’. I believe that as a community we can and will do that when the environment seems hospitable to change and growth.
My children should be welcomed into your environments, but your children should also be invited and welcomed into my kids’ environments. Your children will be sharing the world with my children. They should not fear my children because they were never given the appropriate chance to understand them. They should know that while my children are different, they are not lesser. They can do amazing things in the right environment.
Your children should have the opportunity to see a sensory room and understand it’s purpose. Your children should have the opportunity to use an AAC device as their only way to communicate with other people for a day. Your children should spend a day sitting in a wheel chair, just for the experience of doing it. This type of first hand experience ‘in our shoes’ will make your children better able to share the world with my children. Being part of an inclusionary environment in elementary grades will help your kids understand early how these sort of school functions can be. It will become second nature for them to easily include others, because of the example that they were exposed to throughout their school functions.
In time, with enough work, incidents like the one described above just wouldn’t happen. But we have to start somewhere before we can get there. Inclusion is a 2-way street, can we start a dialog about how to get everyone properly involved?