As we travel through our journey of supporting exceptional individuals, we are able to gain so much insight and take so many lessons with us. We recognize that there is not a “one-size-fits-all” approach as each of our individuals are just that, an individual. Part of our current journey lies within the boundaries of uncertainty. We are uncertain of how future funding and support is going to work and that can keep us up at night worried about how to be there for our individuals. This is the point that we can go back and look at those lessons that earlier individuals.
I began my journey with this recently when I heard of the passing of a wonderful young woman who taught me so much. 25 years old is too young to pass on, but when you understand that she was given 72 hours to live upon her birth; that length of time is amazing. B (I will not be using any names in this piece) overcame so many barriers and obstacles. Her conditions were physical in nature as she only had one partial limb. Her spirit and mind were amazing though. I first met her when she was about five years old. It is so interesting at that age as her peers simply acknowledged her condition and connected with her as they would any other child. It was the adults who had difficulties understanding and overcoming pre-conceived notions about what her abilities might be. It was wonderful to see her go across the stage in her power wheelchair at her high school graduation and fantastic to hear of her college graduation and then role as an advocate. She brought so much to the people with whom she interacted.
The lessons that I learned from her were the following. The first lesson is one that we learn every day with any of our individuals, “don’t judge a book by its cover.” Our individuals bring so much to the world no matter what conditions they are seeking to overcome. The second lesson is “access is essential.” Products like the Candy Corn Switch or Movement Sensor Switch can give alternative forms of access for those individuals who might have severe limitations in access. The old product, the TAP-it was designed with B in mind. Newer products like Visilift+ can give the same unique access. We can never simply assume that by handing any individual an iPad or Tablet that they will suddenly have access. Use the SETT framework when assessing what their needs are as then you will find more personalized approaches that can allow that specific individual to access information and share their abilities.
The next individual who came to mind was A. He has severe Cerebral Palsy which limits many things he can do. He is in his mid-20s now and the issue he faces is that he cannot find a job. The idea of judging a book by its cover comes into play here as so many jobs he applies for focus on his limitations and not who he is. They are not always looking at what he can do and how things that they do one way might be able to be done another way which he could do. He is also a high school graduate and has taken some college courses. The irony is that if you were ever to play video games against him and his adapted controls, you probably would not win.
Access is so important for A as he encounters the world. Another lesson that I did learn from him was “prepare everyone for the world beyond high school.” He has not had the courses that would help him understand how to best interview or to even understand what some good opportunities might be that he might be able to pursue. Too many times, when we think of transition programs, we are thinking of moving from one building to another. What are we doing to help students understand their strengths and abilities for the world beyond the classroom. If they need adapted tools, do they know what they might need or how to ask for it? What might we be doing during high school years to give students the experience of different positions and the opportunity to network with business owners. Rather than focusing on the right tools, this lesson focuses on the right training and initial support.
The third individual really made an impact on me, and it was not until many years later that the lesson from him was learned. R was non-verbal and autistic (this was in a time when autism was a single category and was also a sub-category of schizophrenia.) I was asked to work with him as others were frightened by him. He communicated through non-verbal grunts or yells along with hitting the table or desk in front of him. We did not have the technology we have today. I did notice a couple of things about him though. He liked to draw but did not like pencils or pens. He used crayons briefly before they moved into his mouth. He would also use markers, but only briefly as he would sometimes make faces when using the markers. So, I tried something a little “higher tech.” I got a package of scented magic markers to see how he might interact with those. He suddenly began to use those markers to draw everything. He did like to smell the markers and would end up with colorful mustaches on some days.
It was not until many years later that I learned the lesson he set aside for me. I was in a supermarket and ran into my cooperating teacher that I had with R. We greeted each other and exchanged pleasantries. She then shared with me that she always remembered us working with R. He had passed on years prior to this, and she still kept in contact with his family. They would talk about how the shift to scented markers allowed him to create self-soothing behaviors. I had never heard this and asked her what she meant. She shared that it would be the following year when they noticed that he had less colorful mustaches. As a matter of fact, it was only on days when he was having a hard time that they would see one and it would always be red. Red at that time was cherry scented. Even at home, if he was having a hard time, he would go to the red marker, smell it, and then begin to calm down. She shared that R’s parents were so grateful that we had taught him how to self-soothe and how that was such a simple way to do it for him. The lesson he gave to me was “look at all aspects of the individual and try things, no matter how simple they seem.” Is there something simple that our individuals need to stay focused on work or to move towards de-escalation? What about a tangle toy or a sensory stone? Might something like that help an individual when they feel overwhelmed?
What each of you do matters, every day! Take time for yourself and know that you make a difference. Know that even some of the simplest actions may have unbelievable outcomes. Find those tools that work for the individual and allow each one of them to best display their abilities. Believe in them by believing in yourself first. Know too that I believe in you and know that you are doing amazing work!