Special Needs Families
A Next Generation Inclusion Approach
When I saw the challenge “Return to school, but not to normal” on social media today, I started pondering how we can create an amazing experience for special needs families.
So much has changed in the 18 months since the pandemic forced school closures across the country. What has happened to them? What do they need now? What would be better than “normal”?
As we strategize to support these families, should we use person first OR identity first language and how can we do it within a Next Generation Inclusion approach?
What should we call them: “special needs families?” “families with special needs?” or “families of children with special needs?” AND I’m not asking about political correctness here!
In a recent CAST keynote presentation, Luis Perez described the difference between person first and identity first language.
Person first language affirms that I am a person first and that ONE of my many descriptors is having special needs. It came out of a disability movement sparked by advocacy groups who had strong reactions to phrases like “special ed kids” and “inclusion students” and “autism class.” They wanted to be viewed as whole human beings with a wide range of variability.
Identity first language is a way that an individual can claim a part of his/ her identity. Perez, who is legally blind, says he’s proud to claim his disability. “I am a disabled person,” he says, “just as I claim my ethnic heritage.”
I think it’s useful to apply this distinction to special needs families. If we are committed to improving our effectiveness in partnering with these families, when would we use person first or identity first language?
Person first language:
When we collaborate with families during the special education IEP process, we need to think of families and their children as unique. Each brings different backgrounds and experiences. The whole IDEA – special education – identification – services – progress monitoring process is grounded in using a variety of assessments to discover each child’s unique characteristics. It’s clear that two children with autism do not behave the same way. It’s clear that two children with learning disabilities do not process information the same way. It’s clear that two children with intellectual disabilities do not have the same capacity for learning.
If that’s true for our students, just think of all the variables of our families. What culture did they grow up in (racial, religious, urban, rural, outside the US)? What is their family configuration — fewer today look like the picture above . Do they have both parents together, divorced or deceased parents, same sex parents, grandparents, guardians, or foster parents? What prior experiences or preconceptions do they have about education and about disabilities?
I know that every year when my children were in school, I wanted to tell my story to the new batch of teachers. My two children were quite different. Our struggles and victories were not the same. As a single mother, how could they work with me and my children if they didn’t know my story?
I have such regrets that as a young educator – before I knew better – I wanted to roll my eyes every time a family started to launch into their story. How long would they talk?
Years later, I harnessed the relationship building power of learning their story. I asked questions and thought about connections between their story and how their children interacted with others and the learning process in my classroom.
I could use details of their story to find common interests and build strong partnerships with them. Everyone benefitted.
Person first language says that you view them – and value them – as individual people with unique stories.
Identity first language:
On the other hand, as we plan our systemic approach to building powerful alliances, we need to think of families as a group. Families find it comforting and valuable to affiliate with other families whose children have similar disabilities. Today we have powerful lobbying organizations that started as a family support group, like United Cerebral Palsy, CHADD, the Learning Disabilities Association, and NAMI. More experienced families mentor those who are just joining their ranks. They have discovered their voice can have a bigger impact when they join forces.
Using identity first thinking, we can ask:
What workshop topics related to preparation for post-secondary outcomes would appeal to families of transitioning students?
What communication systems could we put in place for families in our 18-21 year program?
What resources could we put online for all families to learn about the special education IEP process in our district?
How can we support special needs families whose children have experienced trauma?
So, it’s not a matter of being politically correct.
If you know the differences between person first and identity first, you can use the appropriate term intentionally. It does make a difference.
If you want to learn more about working with families using a Next Generation Inclusion approach, check out my website Visionary Projects page. You’ll find a webinar series for families and another for the professionals who work with them.
