About Me

what is an ability hackerA “good hack” is slang for a clever solution to a problem, and “hacking” is the act of creating that solution.

I call myself an ability hacker because I strive to create solutions that encourage my daughter to grow stronger and build new skills. I am always on the lookout for interesting solutions developed by others as well.

A few years ago, I found myself unexpectedly thrown off kilter when we received news that my daughter would be born with Myelomeningocele (more commonly known at Spina Bifida). I was 20 weeks pregnant, and the next 18 and a half weeks were a roller coaster of emotions, filled with loads of research, prenatal testing, and planning.

Once my daughter arrived, well… I was in love! Her being here also let me move from worry mode into action mode, and being active… even proactive… made me feel a ton more positive. However, I often find that what I want for her either doesn’t exist, or is REALLY costly. As a result, I get creative. I use inexpensive, everyday materials and throw in a helping of can-do spirit to give her the tools she needs to thrive. Sometimes things work. Sometimes they don’t. This is my space to share ideas and creations (that have worked) with you.

I’ve also found that it can be quite challenging to figure out the every day life side of things. What I mean by this is navigating topics like how to communicate with doctors & caregivers about my child’s needs, how to advocate for my child, how to explain my child’s differences to others (and to her), and how to navigate systems like education (IEPs, 504s) and government programs. Sometimes the “hacks” I write about fall more into this space by sharing solutions that have worked well for me.

I hope you stick around, read a bit, and let me know what you think! I would love to see you subscribe via email (you can subscribe in the right menu bar; on mobile, it’ below the text… keep scrolling). It’s nice to meet you!

-Amy

Note: Every solution won’t work or be safe for every child, so please always partner closely with your child’s doctors and therapists if you decide to try out some of these ideas!

11 comments:

  1. Amy! I love this website!! I am so proud of you and happy that you’re doing this!! It will help so many other people!! :)

  2. What a wonderful site! As a PT, I have already referred several patients to your site. Any suggestions for self-catheterization in KAFO’s? Or any clothing hacks for kids who wear tights/leggings under KAFO’s that need to remove them to toilet?
    Thanks!

    1. Thank you! :) I am still working out the challenges of self-catheterization and toileting with braces… if I come up with anything, though, I will definitely let you know. Even with AFOs this is a challenge, so I can imagine things get even more difficult with KAFOs. We recently added twister cables and so far are taking them off / putting them back on each time – but it’s frustratingly time consuming.

  3. (this is not for posting on your page, thanks) Urge you to use black, high-contrast type throughout the website* to make it readable, accessible and user-friendly for adults of all ages, thanks. Light-value, low-contrast type is now very trendy but it defeats the purpose of a website (as the internet was designed as a visual communications format). Cheers.
    [*in this page the words About me, Leave a reply, are shown in accessible (black, high contrast) type.

  4. Hi Amy, thank you for this website! Finally someone who understands what we as parents go through with just trying to find shoes for our children. Will trying to let them feel as normal as possible, do you have any suggestions for my 3 year old that wears AFO’s (just below his knees)

  5. Hi amy! I was wondering if you have any shoes for my daughter she was born with a club foot and her feet are 2 different sizes and I can’t ever find two shoes in the sizes she need do you have any idea or any thought on where to look? Or do you sell 2 different shoes without having charging extra

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