Being Sabrina’s Microphone

I recently shared a post from the Uncommon Sense Blog: “I cannot be her voice. But I’ll be her microphone.”

There are a few reasons why I stopped blogging and being active on Inclusion for Sabrina a while back. One was being overwhelmed and burnt out with Sabrina’s new chronic health issues. But another was because I started considering how much I wanted to put out there. I started considering how much I wanted to share, and how much it was fair to her to share, how much she’d want to me share.

After some time off, it’s become a bit more clear.

I believe that one of Sabrina’s gifts, one of the ways that she can contribute, is her ability to touch hearts, and her ability to spark change.

It’s a journey that I feel we should share. Although this blog is called Inclusion For Sabrina, my writing and my advocating isn’t just about Sabrina. It’s about raising awareness and inspiring change in our schools, communities, and minds.

Not everyone may agree with this, and I get that. It’s a very personal decision. Some share more than others in general.

I may not be able to be her voice. But I can be the way though which she shares her gifts and makes her change in the world.

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My Rebuttal – Part 1

I recently came across an article that discusses objections to inclusion. This article definitely made me think, and in some ways it reminds me of what I believe strongly – that bad inclusion is often used as an argument against inclusion. I have a lot of thoughts on some of the things that she says, so I am going to write in 2 installments.

Here’s Part 1. The article’s author wrote: “I’ve witnessed instances in my own kid’s classrooms, where both the teacher and teacher aide were needed to skilfully ‘manage’ one child’s behaviour, while the other 20+ children sat and waited patiently for the crisis to pass. So resigned was the rest of the class, I was curious as to how much of their time was routinely spent in this fashion, and whether this impacted their learning.”

First of all, I certainly agree that we don’t want one child to impact the learning of the rest of the class. So, let’s unpack this.

If this child has a history of difficult behaviors, he/she should have a Behavior Support Plan (BSP). Does this child have one? I am amazed at the number of children who have so-called “behaviors” who don’t have one. That leaves the teacher/aide left to scramble, the rest of the kids to wait, and the child to have their behavior reinforced. I’d be curious what this child’s BSP looks like (if they have one at all).

Many children with “behaviors” aren’t given a BSP, their behaviors are being reinforced, and then their mismanaged behavior is used as justification that inclusion isn’t working.

Let me give you an example: When Sabrina was in preschool, she had a habit of grabbing things and dumping them on the floor. The staff would immediately say “Uh oh. Let’s clean it up!” and then they’d clean it up together. One day at drop-off, I observed this “behavior”. All of the staff were busy removing kids from wheelchairs, getting them settled, etc. Sabrina was looking around the room, obviously checking everything out, wanting some attention, and deciding what her next move would be. I knew what was coming next. She grabbed a basket of items, held it up like she was going to drop it, and said “Uh oh!”.

No response from anyone. She did it again. No response. Finally this time she dropped the basket. Toys went everywhere. Staff immediately ran to her. “Sabrina, we can’t dump items! Let’s clean them up together!” Sabrina was thrilled. It didn’t take an expert to see what was happening. I suggested to the staff that perhaps they ignore the dumping instead of giving it attention. “Oh no, we can’t ignore it. She needs to know that it’s not ok and be responsible for cleaning it up.” Um, OK.

I advocated for a BSP, which amazingly enough, she didn’t have. Sure enough, once the Behaviorist looked at the reason behind her dumping, they very quickly realized that it was an extremely effective way for her to get attention. So they wrote in her BSP that her dumping behavior was to be completely ignored. A week or two later, the dumping stopped.

BSP plans are very effective at shaping behaviors.

Second of all, I personally know children without disabilities who have such “negative behaviors”. I’ve witnessed “the whole class stopping” while the teacher manages the behavior of a child without a disability. This isn’t something that is limited to only children with disabilities.

The article also asked: “I also wondered whether repeated exposure to this behaviour promoted understanding and tolerance or, alternatively, led to stereotypes that people with disabilities are difficult and disruptive?”

Whoa. This one got to me. It sounds like she has her own bias here.

A class’s response to exposure to something in large part depends on what they’re seeing the teacher and other staff model. To suggest that we should limit exposure to kids with disabilities so that the typical children don’t develop negative stereotypes seems harmful for a variety of reasons. There are plenty of children who’s behavior I don’t want my typical child to emulate. Would I suggest that the other kids be removed so that my daughter is only around children who’s behavior I am happy with? First of all, that would be impossible. And second of all, I don’t want my children to live in a bubble. Having them exposed to other behaviors and attitudes allows us to have conversions about topics that are important to discuss. Questions like: How did you feel about what happened? How did it make you feel? Why do you think it happened? What could have done differently? How do you think that child felt during that time? These experiences are such a great opportunity for developing problem-solving and empathy. Our children don’t live in a bubble, nor should they.

If anything, I’ve seen children who are used to be around my own daughter have a great ability to be understanding. They understand that she can easily get frustrated because she doesn’t understand something and has limited ability to communicate, and they have empathy for the fact that this must be difficult.

I wonder if instead of teaching us to all live together, we are teaching our kids to send others who are difficult “away”. And what about adults with disabilities? Should we also keep them away from the community if they have behaviors that we’re uncomfortable with? I really feel that this is a slippery slope.

Lots to think about here. Feel free to chime in with your thoughts. Stay tuned for Part 2!

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I’m Back & Ready!

It’s been a while…

A while since I wrote a blog post entry, and a while since I’ve consistently posted. I needed a break.

Sabrina had some medical issues that quickly became the main focus. It’s difficult to focus on inclusion and all that goes along with it when your child is not well.

But I am back.

We’ve (hopefully) made some good gains with Sabrina’s health. I’ve done some work around inclusion in the community, work that I am very proud of (more coming on that soon). And, Sabrina is transitioning to Middle School. There’s so much inclusion to advocate for, so much to explore. So many people to talk to, so many ideas to share.

So, I am back, with a renewed sense of advocacy and spirit.

I’d love to hear how you all are advocating out there. Leave it it the comments!

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A different lens

I quickly watched part of this video and something immediately caught my eye.

“It’s OK to say NO to doctors.”

Isn’t that powerful?

I learned this pretty early on when I permanently walked out the door of Sabrina’s first neurologist, who didn’t seem to believe that I should have a voice in my 1-year old daughter’s medical care.

Unfortunately, it took me a bit longer to learn it’s OK to say no to therapies and theories/beliefs that weren’t right for my daughter or for our family. I cringe when I look back at the endless hours wasted trying to force Sabrina to do things that she didn’t want to do, that her body or brain wasn’t ready to do, instead of letting her be a kid. I vividly recall what my internal reaction was when a friend of mine asking me if I didn’t think that perhaps Sabrina would get the same or more benefit from playing more with other kids. Inside I screamed “of course not – she needs intensive therapy and then more intensive therapy! Playing with other kids isn’t going to help her!”

Oh, how I wish I would just have let her play more with other kids.

My decisions back then came from a place of fear: What if she doesn’t “get better”? What if this is the magical therapy that is going to help her?

I can’t get those hours back and there’s no point in having regrets. All you can do is learn and move on. I now look through a different lens every time I consider something for her:

Is this something that she’s going to have fun doing? Is this something that will help her be a part of the community? Is this something that is going to work for our family as a whole? If the activity involves working on a skill, is it a skill she’s showing interest in learning? Is this something that we truly want and need, or is it just an attractive option because it’s available to us?

Looking at it through this lens means we often say NO to things that have helped other children progress, and I am not going to lie and tell you that isn’t sometimes very difficult to do. Believe me, the constant nagging feelings are always there. Am I holding her back from learning because I am not bringing ABA into our home? Because I don’t push the reading more? Because she’s not involved in more activities?

In order for me to be at peace, I have to constantly remind myself of what our big picture vision is for Sabrina and try hard to block out everything else.

“The things which are most important don’t always scream the loudest.” –Bob Hawke

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Moving Forward Without All Of the Answers

Do you ever have the feeling that you want to do or be more, but aren’t sure what that “more” is, or what you can do in order to be the best version of yourself that you can be?

Yeah, me too.

So many questions I constantly ask myself: How can I lead? How can I make the most of this life I’ve been given? How can I take all of the projects, ideas, and passions that I have and make enough space around each of them in order to really make a real contribution to each one? How do I make the most impact? How do I stop, take a deep breath, and just let it all go for a few moments so that I am present during the time I’m with my family and my friends? So that I can recharge? How do I make space to do bigger picture brainstorming to get ideas out of my head and into action? Where can I learn to say “no” to activities and projects that don’t serve my bigger purpose? How do I improve at something that I have a difficult time doing – organizing all of the thoughts into my head into coherent sentences? 🙂

I love the work that I do around disability advocacy and inclusion, and I love the business that I am building as an event manager. I often dream about how to create a brand for myself that encompasses both, one that embodies who I am as a whole person and doesn’t require compartmentalizing the two. That dream often paralyzes me from just doing something.

I am very aware that I like things tied up with a neat little bow. And that planning, that “polishing” often holds me back from the doing.

I was recently watching a show where Seth Godin was being interviewed. He said something that really struck me – that you should “work to ship” instead of “work to polish”. He talked about how when he devote time to something, he knows that at the end of that time that there will be an end result – something will be done. Getting something done vs expecting perfection… what a scary concept, huh?

So, despite the imperfections of this blog post, I will now press “publish”.

I want to hear from you. How are you all pushing yourself to be the best version of yourself that you can be? In what ways have you pushed forward and “pressed the buzzer” without knowing the answer?

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Creating Ripples Is Enough

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” – Mother Teresa

I often have parents contact me because they want inclusion for their child and they don’t know how to make it happen. Often they ask for specific steps. Sometimes they just need some reminders, and inspiration and courage. I’ve had many of those parents get their child in an inclusive setting.

Then there are those who don’t.

I have a difficult time letting go of those.

I started to write a long blog post about this, but then stopped. Because what it comes down to is simply this:

I can’t change the world, and that’s OK.

And so tonight, and moving forward, I will try hard to focus more on the successes than the disappointments.

I will remember that it doesn’t fall on my shoulders to do all of the work.

I will remember that any change that has been bought about because of Sabrina’s story has been Sabrina’s change, and not mine. She has changed so many hearts, and she’s only 9. She will continue to do great work, and I will continue to fight to allow her to do so.

And now, instead of trying to put into words all that is in my head, I will let it go, and go to bed.

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Playing Big

What does “playing big” mean to you?

Is it starting your own business?

Is it pursuing a creative outlet, like creating art?

Is it making a systems change within your current work environment?

Is it getting up the courage to make a presentation in front of a group of colleagues?

Is it moving your child with special needs to their neighborhood school?

[Note: original post continued via a “Read more…” link — the rest of this post’s text was not shown on the homepage capture and would need to be pulled from its own permalink if it has a separate Wayback capture.]

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They said…

…that you would work in the back of the classroom, isolated from the class…

…that you wouldn’t have any friends and that the other children wouldn’t relate to you…

…that you would be overwhelmed and would hate going to school…

…that you don’t notice what’s going on around you and therefore wouldn’t benefit to being around other kids…

…that you wouldn’t be engaging in anything meaningful…

…that after 3 years in a self-contained classroom you were just starting to respond to your peers reaching out to you, and that putting you in an inclusive setting with more demands would hinder that “progress”…

…that because you don’t have very much verbal ability, that you wouldn’t be able to participate in presentations, etc….

… that you wouldn’t be embraced and the other children wouldn’t want you in the classroom…

…that you wouldn’t be able to participate in the general education curriculum…

Remember Sabrina, don’t ever let anyone’s ignorance and assumptions limit you!

[Note: this post included several embedded photos of Sabrina in the original — not recoverable as text.]

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Portfolios

“Her portfolio is her marketing package.”

That’s what someone in the field of inclusion just recently told me.

Yes!

I’m spending some time working on Sabrina’s portfolio today. She’s had one for about a year now, but I’m updating it and adding more information about her recently activities and sports, and adding a section for the future.

Sabrina’s portfolio highlights who she is, and what she can do and accomplish. It explains how people can help support her. And it explains the high expectations we have for what she can accomplish and who she can continue to be.

Now that she’s in school, it’s used to introduce her to new teachers and staff. It’ll be used to show what she can accomplish in an inclusive setting. It’ll be used during various transitions, to show our expectations for her life.

Does your child or the child you support have a portfolio?

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