The world is not set up for children (or adults for that matter) with special needs so every day can be a challenge. What I’ve observed during my time in China working with families with kids with special needs and here in the US is that lack causes families to get really creative and innovative. Perhaps not surprisingly, families with children with special needs don’t allow themselves to be stymied by an ableist society, lack of equipment or access to it, or most especially, the differences of their children–rather, they often work within society’s limitations to find the best ways to meet their children’s needs.
So, I want to highlight that ingenuity, tapping into our common wisdom, rather than just bemoaning our critical challenges.
In this post, my goal is to start a chain of communication where families with children with special needs can share cool “life hacks” with one another and find solutions to their everyday challenges. I’ll start by sharing one of the things that we’ve discovered that works really well for Lucia, our daughter with a genetic syndrome of the brain, who feeds through a g-tube, and has a combination of high and low tone. Then, I’ll post a question in an area where I need help. What I’m hoping is that someone out there can answer my question, either on their blog, or on social media, and share their “life hack” and pose their own question, and so we can keep sharing! Feel free to use the hashtag #specialneedshackathon so we can connect up all the posts.
So here’s the format: 1) Answer a question (on your blog or social media) by sharing a life hack that’s worked for your family or or your child with special needs; 2) Pose a question you need help with; 3) Use the hashtag #specialneedshackathon!
Of course everyone’s children’s special needs will be different, but my hope is that we can begin this important conversation, focusing on our strengths and our creativity, and building our community, rather than perhaps having to reinvent the wheel! If you know of other efforts to share solutions like these, please point me that direction, as well.
So now for our life hack! We always share with other parents that we stumbled into a great solution in that very early on we could tell that a regular stroller wasn’t going to give Lucia the trunk, torso, and head support that she needed to sit well and enjoy the world. When she was about 14 months, we had her in an umbrella stroller and were visiting the Abilities Expo in Edison, New Jersey. Our friends had a Special Tomato chair for their son who has CP and we were eager to try one out! My husband asked if the size one soft-sitter would fit into the umbrella stroller and though the personnel didn’t know, they were eager for us to try. Well, lo and behold, you can strap the size one chair onto an umbrella stroller and it fits all snug, almost as if it was made to go in there!
Of course, you can probably fit the chair into many strollers, but for us, attaching it to an umbrella stroller has meant more easy mobility for our family and a lightweight, cheap solution, as the chair alone can be quite expensive. Special Tomato also sells their own strollers but this seemed like a good solution, given that she will be growing out of it in no time!
And now for my question: as Lucia grows out of a traditional changing table (she’s 2 and 1/2 and around 24 1bs and 31 in), I’m wondering what other parents of older kids with special needs who still use diapers do for a changing solution? We’re moving into a new house so we’re interested in finding something that is more long-term, comfortable for her, and doesn’t cause our backs to ache every time we go to change her! Any special needs life hacks out there???