When my sister was transitioning from elementary to middle to high school, there was a family conflict that existed; my father wanted my sister to learn the curriculum that every student experiences and my mother was more interested in her learning functional academics and having social connections. For example, there were many years of IEP meetings where the team had to write goals and objectives for my sister to learn how to tell time via an analog clock or learn math skills by hand instead of using a calculator or being mainstreamed in an “academic” class.
Were my parents on the same page? No, far from it. It was hard to imagine what my sister would be doing when she was 18, 20, 25, or 30. I believe that my father thought, “if she is exposed to the regular curriculum, somehow (no data) this is going to benefit her.” Did we ever think that managing a CPAP machine would be a challenge, or she would go through ten different jobs before we found a good fit; or working together in a group would be the most important skill in her life? If they knew the forecast for her future, would the goals and objectives in the IEP have looked much different?
Independent living was never discussed before age twenty-two. Even if it was brought up, it was too far in the future to actually be seriously considered. We would have ever imagined my sister would be living in a group home and this would check every box they would have ever hoped for? This was another “dynamic;” my father had a difficult time letting go and letting her live in a group home and my mother couldn’t wait for her to have this opportunity. A data point we tend to ignore is that Big, Big, Big box which should be on the priority of every IEP! COMMUNITY and CONNECTION. This is the most important data. It won’t be the job or the money!
Parents have some tools, technology, and data to forecast the future. The problem is that they don’t know what the weather is like post 22 because they do not get exposed to it. If they did, we would prepare appropriately. Maybe we just want to ignore the weather. We may think, “we will just take care of them for the rest of our lives.”
The cycle I am referring to is the cycle from 3-22. To be in this cycle is safe and unrealistic to forecast the future. Many families are well out of that cycle now and are wondering, “Who will do what I have done for all these years?” For special education to change we need to somehow bring in the data of the future.
In my career working in special education, I have seen it over and over and over. I often thought, “how can I help families prepare? How can I inform what the weather is like? How do we engage in this discussion with sensitivity?”
The other piece of data we do have is that the cycle will eventually break. Not when we want it to but it will. How will it break? Well, we won’t be here forever and we don’t do well planning for this.