A Facebook memory popped up today with a picture of my family when my oldest daughter was only about 4 months old. My husband I both look anxious, but we are trying to smile. It was one of the ﬁrst outings with our little girl, who was tube fed at the time. I worked with her every feeding, giving her milk through a tube taped to my ﬁnger or breast as we put the milk in her belly through a tube in her stomach, gently teaching her that food came from the mouth and that in order to feel full she had to work to eat. I sat with her day and night, whenever she was hungry, working with her oral motor skills so that when she was ready, she would have the skills she needed to suck and swallow. Going out was daunting. I felt like I needed to give her every opportunity to learn and that going out could take that away. Providing tube nutrition without also working on eating, was skipping an opportunity for her, taking her one step farther away from our goals.
I remember those days like they were yesterday. I spent every waking minute working to help her to learn, to be successful, to be independent. I learned everything I could from the internet, from books and from every specialist or program I could ﬁnd. I knew she didn’t have time to waste. Each missed learning opportunity placed a hurdle in her path to success because as she got older and bigger essential skills would become harder to learn and master.
There has been much written about grief when you have a child with a disability. My daughter had cerebral palsy. I never experienced grief for what might be seen as my losses; a ‘normal’ child, a ‘normal’ infancy or childhood. I did experience great sadness when I saw what she would face. It made me sad to see how hard she worked and slowly she made progress. My heart sank as I looked at the world and saw how many places would be inaccessible to her. Worse still, I knew people would be cruel to my sweet, observant, curious, loving girl. They would be cruel because they didn’t understand her and would assume she couldn’t understand them. I could hope that those things wouldn’t happen, but reality showed me it likely would. It made me sad to know I couldn’t protect her from all of these things. We try to protect all of our children, but when your child has a disability, it makes that instinct to protect so much stronger. These struggles weren’t mine, they were hers. It was my job as her parent to give her all of the skills and conﬁdence she would need to surmount them.
Then came the day to send her to school. Our family had worked with specialists all over the country and even the world to ﬁnd the right therapies, programs and people to help her reach her potential. After all of that life consuming and giving work we had done as a family, the school district clearly stated they did not have to continue to support that work. They would allow her to access school, but would not work to help her reach her potential. We looked all over the world to ﬁnd an appropriate program, where she could develop the skills necessary to make her independent and the academics necessary to make her successful. The blocks of life were already stacked against her, we needed an environment where she could be fully supported to do her best.
We didn’t ﬁnd it. We searched specialty programs, private and public programs, and with no better option in hand, we ﬁnally decided to send her to the lottery school she had been accepted into. They oﬀered some services, there was parent participation and we thought she would get a decent education, but I was terriﬁed. I had a little girl who couldn’t walk and couldn’t talk. When I was in school as a child, I remember seeing kids who were diﬀerent in a closed room in the back of the school, not integrated, not even in the same lunch hour. That wasn’t what I wanted for my curious, intelligent little girl. But, I also was afraid of all she couldn’t tell me; if kids were mean, she was feeling belittled, or even if she had a great day. She couldn’t tell me. She also couldn’t ﬁght back if she needed to. hitting, kicking, yelling, or just calling someone else names were not options for my daughter. Then my mind would drag me back to anxiously wondering what inclusion would really mean.
What happened next was beautiful. You see, kids just see kids. Seeing diﬀerences and judging those diﬀerences as good or bad is something we learn. Her classmates just saw another kid, who used diﬀerent technology, who moved a little diﬀerent and talked a little diﬀerent, but each of them reached out and talked with her, worked with her on projects, walked with her at lunch, sat with her on the bus. She wasn’t made fun of or ridiculed, she was popular. It made me believe in people, it made me believe in education, it made me believe that her life could be better and diﬀerent than I thought. It made me want to be a part of that change.
There are many ways to do “inclusive” education. I put it in quotes because it’s not always that inclusive. What I have seen ranges from a special program within a school that ‘wheels in’ students to one or two classes to be inclusive (often with them sitting in the back by themselves to learn the material) to ‘clustering’or putting all of the kids with a 504 or IEP in one classroom so they are included together to being in the classroom most of the day, but taken out at various times that suit the therapy team to do whatever specialties are on the IEP. While these practices hold some merits, I don’t believe they are truly inclusive. I believe that to be inclusive you must create an environment where everyone has the supportive tools and people that they need to be fully interactive in whatever the lesson or activity is at the moment. It doesn’t mean changing the activity to ﬁt the kid, it means ﬁguring out what the kid needs to do the activity.
It doesn’t mean modifying the curriculum to be accessible, it means creating accessibility to the curriculum. It doesn’t mean taking students away from learning to focus on skills, it means using the learning to build skills. We believe inclusive means giving the supports needed, when they are needed to create as much equality, value, education and skills as possible. We believe it teaches all children to be resilient, patient, solve problems, and incite empathetic action. An inclusive education provides programming, challenges, and opportunities for growth and learning to all of its students.
My experience taught me that most kids are wonderful people and given the opportunity will make excellent choices. Most kids are intelligent, capable problem solvers who want to interact with other kids, learn, observe, create, understand and share. UP Academy strives to be a fully inclusive environment, our integrated neurodevelopment program helps kids get what they need, when they need it. We are developing a method of education that we can share around the world to change education for diﬀerently-abled kids and their peers. We seek to change the agreement reality of the way society views diﬀerently-abled people and create a generation who sees people with value, ideas, and can identify unique solutions to everyday problems. A reality where everyone, regardless of ability, can be seen as an individual and the productive contribution they can make to business, community and society. A reality where, like kids, people just see people. If we can use education to teach equality and a mindset of possibilities, we can change the world to one where I would have wanted my little girl to grow up. A world where I didn’t have to fear ridicule and cruelty any more than the average parent.
Kids just see kids, let’s change the world to be one where people just see people.