Daniel identifies as…
- 26-year-old, cisgender male
- disabled with cerebral palsy and hearing impairment
- university graduate with a double major in political science and sociology
- included in the typical world
- public speaker, activist, and contributing member of society
Daniel is my son.
So, when our Better Leaders, Better Schools Mastermind groups started to read Demystifying Disability: What to Know, What to Say, and How to Be an Ally by Emily Ladau, I knew I wanted Daniel’s voice to be included in our experience.
Daniel attended our groups of school leaders with his appreciative inquiry into his own K-12 experience. His expressed intention was to…
“encourage the school leaders in the important work they do to meet the personalized needs of students with disabilities in schools.”
Boy, did he encourage!
Here are some of the key messages about IEPs and inclusion we’re still chewing on…
Families are Fragile; Families of Disabled Children are More Fragile
Dan speaks candidly of his experience of growing up in two homes, week-on-week-off, and his two biological parents’ disparate perspectives on his education, growth, and development.
Needless to say, they were substantively different.
The statistics say that divorce rates of parents with disabled children may be as high as 87%. In many ways, this renders disabled children even more vulnerable.
While no one believes a child is causal in a marital breakdown, acknowledging the complexities, diversities, and evolving nature of the family relationships within the context of IEPs and IEP planning would help disabled children SO MUCH.
Now, we’re all wondering why school leaders, learning assistance teachers, case managers, and classroom teachers aren’t considering this dynamic more candidly. Acknowledging it would potentially impact IEP frontloading, IEP meetings, and IEP goal-setting. Based on these statistics and realities, harnessing the support of two parents from two households definitely needs to be considered the standard protocol.
Strengths Unlock Learning AND Identity Formation
Dan spoke of his experience of finding the debate team. He attended, practiced, and competed with these students from a different high school from Grades 8-12. This opportunity stands as the most crucial and formative of Daniel’s K-12 experience. It was beyond educational, it was identity-forming.
As the Ruckus Maker school leaders digested Dan’s story, we spoke about how the strengths-based focus is essential. It’s not 5min of listing strengths in an IEP meeting.
It is actually unlocking extraordinary potential. It’s life-giving. Even though this was extra-curricular, in a different school, and took extra effort to create (on everyone’s part), it needed to happen.
From my ‘mom perspective,’ Daniel was NOT a typical or a typically-developing debater. In fact, his disability was on fine display when he was thinking deeply and public speaking. Yet, he learned to engage with his peers and make friends. In his own words, he “found people as quirky and nerdy as he is.” It was as beautiful for me, as it was for him.
Big thanks to his debate teacher of five years, Joanne Taylor!
“You Just Can’t Make It Perfect”
Math had major accessibility issues 15 years ago. Dan couldn’t find the software that made the mathematical writing and algorithms accessible. So, as math surpassed Dan’s incredible mental math skills, he found himself floundering, unable to get the practice he needed. His fine motor skills and immature software were the barriers.
He told us about his disappointment to move from an ‘A’ student to ‘Bs’ and ‘Cs.’
Remarkably though, this disappointment wasn’t an indictment from him. The disappointment was steeped in a gentle and courageous acceptance of the truth, “You just can’t make it perfect.”
Dan sat with mastermind group after mastermind group, inviting them to let themselves off the hook. A disabled child’s experience is by definition different and you can’t change that reality.
One special education district coordinator reflected after Dan left, “I’m so relieved. I sat in IEPs today and I really needed this reminder.”
In conclusion, Dan’s stories are his own. He often stated throughout his week of visit’s that he in no way speaks on behalf of the disabled community, but only shares from his individual perspective.
However, as we demystify disability, his stories are still offering us meaningful considerations.
For the sake of the children,
Karine
PS Dan’s biggest social challenge is “getting past first impressions.” So, he’s pretty thankful all these school leaders gave him the chance to share.