Monday, March 5, 2018

(Video) Beyond the Call: Raising Children with Special Needs

I still feel like an imposter here. Not in the imposter syndrome way, but like I really don't belong here. "Here" is the disability community, specifically as someone who has been out here talking about raising kids who have special needs. I didn't set out to be a public voice for raising kids who have disabilities. I started writing about this topic as part of the writing I do about being dad. Then in 2016 I submitted a piece and was chosen to read at the Dad 2.0 conference in Washington D.C. Outside of that, I have had a long association with various disability communities, mostly through my work as an ASL-English interpreter and as an academic specializing in sign language.

With that in mind, I was honored and little surprised when I was invited back to Dad 2.0 as a panelist to discuss raising special needs kids. When I realized I was moderating the panel I was nervous. Who am I to be leading on this issue in any capacity when I know that there are other parents who are far more knowledgable and qualified? I think the best answer is that I'm decent with words and I can keep people on topic and keep conversations moving.

The panel was intimate and became more of a conversation with the audience, than a traditional panel. The panelists and audience brought a range of perspectives and backgrounds from active bloggers and activists, to people working in social services, to dads just now learning about and dealing wit their child's diagnosis.

Some of the conversation revolved around dealing with that initial diagnosis from both an emotional standpoint, and how we spring into action as parents in those early days. We talked about navigating the continuing journey, including some of the things people don't often consider when they think of raising kids with special needs. For example, we don't often talk about how much time parents miss at work and how much instructional time special needs kids miss with pull out time (i.e. speech therapy) and doctor's appointments. These are some of the hidden costs of special needs parenting. Finally, since Dad 2.0 is a bloggers conference, we discussed how much and why we should or shouldn't write about our kids. The consensus is that if you are writing about your special needs experience, it has to be about you and your journey rather than about your child. You need to be telling your story, not theirs.

I hope you'll give the video a listen/watch, and let me know what you think on the Facebook page. Also, please follow our panelists on social media.

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