Tuesday, February 7, 2012

Special needs motherhood is the necessity of invention

"Ever notice how being a special needs mom means that you have to be really creative in your thinking?" Barb recently emailed me. She's mom to Rhys, who's 8 and has cerebral palsy. And, yes, I knew exactly what she meant. I've always been an out-of-the-box thinker but since having Max, I have become uber-uber-uber-resourceful. Barb had a great story to tell:

"Before Christmas, I was sitting on the floor with my son's wheelchair headrest in pieces, trying to rebuild it so that it would work better because the one we have is terrible. As I am doing this I think to myself, 'Who knew that becoming a Mom would mean that I need to be a mechanical engineer?' And then it hit me—I am not a mechanical engineer, but there is a great university 45 minutes away with a top-ranked mechanical engineering department. So I sent them an email, a desperate email begging for help. Today I had two seniors at my house measuring and taking photos to start the process of rebuilding the headrest, and a mount for the Dynavox! Utilize all the local resources—what's the worst they can do, say no? How are you any worse off?"

Exactly. Me, I've done everything from requesting therapy help at a local college's occupational therapy department to having a seamstress make special absorbent bibs for Max. As amazing as it is to have Team Max—his therapists, teachers and doctors—sometimes the best ideas have come from me. [Pats self on the back.]

It also helps to be shameless and super-pushy, two winning traits when it comes to having a kid with special needs (I once described myself as a "bulldozer.") I'm not so much this way in real life but, man, when it comes to Max I will ask anything and do anything for him.

What sort of resourceful things have you done lately to help your child? Please share, so your brilliance can help others! And allow me to give you big old cyber pat on the back.



  1. Currently I am being 'pushy' trying to get a regular high chair for a $$-stressed family. I've been called a 'bulldog' in the past (this was pre-lipstick-reference days).

    Add a few pats to your back from me, Ellen! Another excellent post!

  2. Great post! Can't wait to hear everyone's comments!

    Love Barb's story about calling the college. Thing is - it's a win-win-win. Barb's son gets an optimized headrest and Dynavox mount - the students get great experience, and the wheels are set in motion for these students and this engineering department to collaborate with other people with disabilities in the future (the ripples can extend further than you'll ever know).

    When we look at challenges in this creative, network building way - we're creating mutual relationships that make the world better for our kids - and for our community.

    The whole world needs to learn from the creativity of special needs moms!

  3. We put a bicycle basket (you know, one of those woven ones?) on the back of my daughter's walker. (It really dresses it up...look at me, getting fancy!) Yesterday she tipped her walker and smashed up her face, so we bought a 3-pound weight to put in that basket. PT, OT, mechanical engineering...my husband and I do it all, heh.

  4. I just wrote about some of the things I do to teach social skills to my child with ASD. Some great tips, if I do say so myself :) http://www.thebabymachine.com

  5. I want to share an idea my husband thought up: sew a button hole into the side of zippered one-piece sleepers for our daughter who has a g-button! She can eat and not have the feeding tube run up by her neck.

  6. My Lily is a night-time pajama escape artist. My solution? Buy zip-up footie pj's. Cut the feet out. Put on backwards. No more night waking to a naked kid in a wet bed! :)

    Lily will also throw entire rolls of toilet paper in the potty just for the sheer hilarity of it. Now, the TP is contained in lovely baskets hanging by the potty out of her reach. Only down side? Many a guest has hollered out from the bathroom to ask where the toilet paper is! :)

    Creativity is key - trying to stay one step ahead of these kids (or even on the same walk!) is a full-time job!

  7. We have a scooter board for Ian to use to scoot around the house on his belly (this was pre-wheelchair). It was hard for him to crawl forward on our wood floors, so I cut finger holes in a pair of kid socks with the grippers on the bottom and put them on his hands. They not only keep his hands cleaner, but the grippers give him traction on the floor as well!

  8. I am lucky enough to be married to an engineer so my husbands days are filled with finding little solutions to make life easier.

    When my son was starting to sit up about 15 months we put wrapping paper around the outside of the bottom half of the pack and play. In order for my son to see out to watch TV (his motivator in life) he had to sit up. Once he sat up we put the wrapping paper around the entire pack and play and he learned to pull himself to stand up. He want from trying to sit to crawling to pulling to stand very quickly.

    My other great find was making a washable car seat cover. My son's reflux caused him to vomit whenever we were in the car so I used the bundle me as a template and made a car seat cover that used elastic around the outside and Velcro for the straps so that I could take it off without taking apart the car seat.

  9. My son loves music and I have always wanted to do music therapy with him. I was not able to find a music therapist in our city (that didn't cost a fortune). In passing I mentioned it to his visual therapist and she actually had the CNIB (Canadian National Institute for the Blind) set up a music therapy class just for him. There will be other kids attending but she did this just for us. How awesome is that? Our first class is this Friday :-)

  10. Love this post and the comments~you all are so resourceful! I'm not that creative but I can be pushy and loud--I too think that's a virtue. :)

  11. This is a tiny thing, but the past two times our daughter has been in the hospital for tests, a kid-sized hospital gown has made it's way into my purse. Perfect art smock!

    Classy... I know.

  12. My little one is super skinny right now (due to both disphagia & genetics), so last fall I started making him pants so he could wear something warm that didn't make him look like he was wearing high-waters or had a bubble butt. I'm getting the pattern down pretty good now. I love the idea of the g-tube button hole from Klmoore0706.

    I also asked some boyscouts at my church if they could make a switch adapted toy - so we now have an "Angry Birds" toy, and an offer to do more.

    We also have an extremely handy PT who has helped make all sorts of specialized tri-wall seating for my son - out of tri-wall cardboard, small dowel rods, and a glue gun.


Thanks for sharing!

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