A “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!
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!!
I love your website Amy! Love your positive attitude, focus on abilities and creative hacks! You will help so many with this!
Thank you so much. Your kind words mean a lot!
Hi any recommendations for an, 11 year old with smos
Plae shoes are great over braces. New Balance also makes extra wide sneakers that have worked really well for me. Check out my resources page for braces for links: http://www.abilityhacker.com/afo
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!
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.
I am guessing what AFOs are but when my grandson had to wear a cast up to his waist for a long time (dislocated hip), I made him some pants, etc. that had velcro on the sides. Bought larger sizes at thrift store to give me room to cut and then sew on the velcro on both sides of the leg all the way up to the waist. Have to measure and then add inches.
(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.
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)
Hi Amy
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
Does anyone know where you can find mens athletic shoes in size 6 EEEE?
SAS Shoes, factory in San Antonio now makes odd sized shoes, any style, for the price of the shoe plus $35.00. I will take 6-8 weeks for delivery and no refunds or returns.
Went to L L Bean site and there are no narrow or slims there. Also, sizes don’t tend to go to 11.
I’m sitting here crying, feeling so less alone in my silent struggle. Thank you for this blog.
I am so thrilled I found your site today. Our daughter will celebrate 25 years next week since her brain tumor diagnosis. She was left with paralysis and a 3 shoe size difference between her feet. We have searched for this kind of information for years! God bless you! also I shared your info with my best friend whose daughter has Spina Bifida and is in a wheelchair with 2 AFO’s. She is in her freshman year at her local junior college. Her Mom is Carrie and she will be contacting you too! She may have help with the cathing too!
Hi Amy,
I am a 29 year old blind Accountant. I have overcome many obstacles in my personal growth and development. I wanted to start by saying that I think it is great to see a parents perspective as her child grows and conquers. I also wanted to say thank you for helping our community become stronger.
I wanted to tell you that i stumbled upon your website while choosing a name for the blog I intend to start. I wish to write about how i overcame and conquered my obstacles i hopes of showing people in the disabled (I despise that term by the way) community that with a strong mind and courageous spirit anyone is capable of achieving their goals no matter what they may be!
I am extremely eager to speak to you about some of the hurdles you have faced while starting and growing this blog and possible see how we can assist one another in getting our messages out there.
As someone who has sold two business’s before 30… a disabled person at that….. I feel as though I should be able to assist you in some ways.
Hope to hear from you soon!
Thank You Amy
All the best,
Brian
Good Day, I am an adult who was born with clubfoot and acquired polio. As a result I have two different sized feet. To add to the situation and stress in purchasing shoes. My left foot is a size 5 four wide and right foot is a 8 med. I am now wearing an AFO. I am not a child but considered a senior citizen (62). As I have gotten older it has almost become impossible to locate shoes that come in the two sizes but, finding a shoe that will accommodate my AFO.
I located this site that gave out information about shoe companies who would work with persons like me. I can say that I was able to locate a company who had a shoe that worked for me.
It makes be happy to see that there is a group of people and families who are out there looking out for their children. Now it would also be of great service to have a group to help adults that face similar problems.
Hi!
I just wanted to thank you from the bottom of my heart for this blog!! I was also born with a rare form of Spina Bifida and came across your website looking for resources for split shoe places.
I attribute much of my growth and where I am in my life to my wonderful parents who helped me grow up to be the mentally strong and independent person I am today. I can tell how much you love your daughter and want her to grow up knowing how amazing she is. Thank you so much for sharing this part of your life with the world!
I’m 25, currently in college finishing up my undergraduate program in a few months and then in January, I’ll be starting a graduate school program in Neuroscience. I never thought I would be where I am today, but I share this because I just wanted to say, if my life has taught me anything, it’s that you can achieve anything you want and work hard to accomplish! Nothing is too difficult to overcome with the right mindset. I’m rooting for you and your daughter and hope she (and you too!) always remembers that she’s not alone and that anything is possible.
From one Spina Bifida patient & family to another.
Hi just wanted to let everyone know the Nike “one shoe bank” DOES do different size pairs of shoes just got of the phone with them hope this information is helpful to someone
Love the term ability hacker! I am trying to do the same thing for my son who has spasticity in his legs. Thank you for all the thoughtful articles.
Hello Amy,
My name is Felecia and I have a website cutabovetheknee.com that’s devoted to amputees and sometimes amputees need different size shoes. I have a resource page that offers information and I’d like to know if I can list your website as a resource for different size shoes? It would send people directly to your website for the information. You can take a look at my resources page to see what that would look like if you’d like. Regardless you’ve put together some great information.
Thank you