Musings of a Marfan Mom



3 weeks ago I had the opportunity to participate in a video chat for parents of children with special needs, hosted by AbilityPath. What initially drew me in was hearing that one of the panel of experts was Dr. Heidi Feldman. I am a HUGE fan of the book she co-wrote: A Parent’s Guide to Speech & Language Disorders. I wrote a review of it here shortly after M was diagnosed and I stand by my assertion that portions of it are a valuable read for parents of a child with any special need, not just a speech or language disorder.

AbilityPath is an online community for parents of children with special needs and professionals to connect with and learn from each other. You can create a blog, join groups related to your interest, or browse articles on child development (both typical and non-typical development). Of particular interest to me right now is their toolkit on the IEP process.

Anyway, this video chat was conducted over AbilityPath’s Facebook page, with Dr. Feldman and two parents serving on the panel. Kim is mother to 3 daughters on the autism spectrum, and Pete has a child with other special needs. Participants were able to submit questions for the panel before and during the chat. The panelists had some really valuable insight.

“Life with autism might not be a cake,” Kim said, “but it’s full of petit fours and tapas.” So true! There are many sweet moments, I’m just finding that those moments are different than what I’d expected. Kim also reminded us to refrain from putting our disability-related books on the nightstand, so that we’ll read something else at night. Guilty as charged! I’ve only been reading autism/sensory books recently, except when I take a break to read Baby Led Weaning. It’s important to step outside the “special needs bubble” sometimes. I’m working on that.

Dr. Feldman also offered practical information from a clinician’s point of view. She advised parents to get their children on their state’s DDS system in case they end up needing services as an adult. She also explained the World Health Organization’s international classification of functional disability and health, which has the categories of participation:
1) social interactions
2) aspects of domestic life
3) major life areas: school, getting job
4) being in the community (recreation, religious life, voting, etc.)

What was equally valuable to all this information was the conversations occurring in the chat room affiliated with the program. We parents were trading stories and tips. I learned about an ID bracelet website from one mother, a company that teaches kids with special needs to play piano from another.

It was a refreshing and informative hour well spent.

AbilityPath will be offering other video chats like this in the future. I don’t have a schedule of those now, but when I know I’ll post information here in case any of you are interested in attending one.

* Everything I’ve written is my own opinion. I was invited to participate and enjoyed the webinar enough that I wanted to tell all of you about it!

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