Over the last eight years, my husband and I have tried out countless adaptive and non-adaptive seats, chairs, blankets, silverware, cups, bikes, trikes, swings, wheelchairs, standers, walkers, etc., while trying to find what works best for Maya and for us as her caregivers. Since I know so many of you are pressed for time yet eager for information, I thought I would create a meaningful list for you, summarizing some of the key products and one person that has helped our family move closer to a place where life feels a little more graceful and enjoyable. Because the individual support needs of children and adults with CP are very diverse, your list may look different. However, I believe many of the things on this list can help a lot of you and I hope you find some ideas here for making your life a little easier.
1. Rifton HTS Hygiene and Toileting System-Rifton really did their homework on this product. Much improved over the previous generation Rifton Blue Wave, the Rifton HTS offers phenomenal versatility and portability. It provides comfortable positioning for Maya and allows us to move her from the shower to the toilet without lifting her. This is a huge relief for our backs especially since we can move the toilet into her bedroom for nighttime potty breaks. There is also a travel pack available for when you are on the go. I haven’t tried it in a public bathroom (I imagine it may be difficult to set up quickly enough) but it’s been great to use at hotels. Maya and I are so grateful for this product.
2. Yogibo-Maya is unable to sit independently and comfortably, especially while performing a task. Even the sofa poses some problems for her. After trying countless products and pillows, we came across the Yogibo. This bean-bag type pillow provides her great support whether lying down or sitting on the edge while watching TV. It can also be easily moved throughout the house. It has a washable cover (some outdoor covers are available) and comes in many sizes. Though it’s a bean-bag style, the material conforms better than typical bean-bag chairs better maintaining the shapes and positions you put them in.
3. Miraflex and Flexon Glasses-Maya got her first pair of glasses when she was a year old. It’s tough for any kiddo to keep their glasses on and it’s even tougher when they repeatedly lose their balance or fall on their glasses. Miraflex glasses were comfortable, durable, and had a strap that allowed them to stay on. We have now transitioned to Flexon glasses which, although not as durable, are flexible and comfortable for Maya. And don’t forget the Stay Puts. These little things are awesome! They keep her glasses where they need to be without requiring them to be extra tight on her face.
4. Apple ipad-Wow. The iPad has opened up so many possibilities for Maya. She is able to play her own music through iTunes and pretend play through virtual dollhouses and salons in ways that her fine motor and postural challenges have not allowed. The Ipad has also supported her inclusion academically by allowing her to type her work (she is unable to write) and do her reading with larger print and a lighted background. The Chester iPad case and wireless keyboard along with the tablet pillow (seen in the Yogibo photo above) have been welcome accessories.
5. Dyno all terrain folding wheelchair-Hello beach excursions!! We always loved the outdoors and enjoyed hiking and the beach. Maya has always loved these activities too but as she got bigger it became impossible to carry her and her wheelchair couldn’t navigate the terrain. From sand excursions to hiking trails, we were amazed by how many recreation opportunities opened up for us once we got the Dyno. Also, we are obsessed with lightweight products and, although this one is no umbrella stroller, it folds and at 25 lbs is easily carried by one person.
6. Thomashilfen Recaro Monza Reha car seat with swivel base-After all of us were having back pain from car transfers I went hunting for a car seat with a swivel base. At the time, I found one on the mainstream market (there are at least two now-one by Orbit for toddlers and one by Combi called Zeus) but Maya was too big for it. After an extensive search, our equipment vendor located the Thomashilfen Monza Reha with swivel base. Because our backs couldn’t handle the side transitioning required to get her into her regular car seat, we decided we either needed to get this chair or buy a fully handicap converted vehicle. And when you are comparing the cost of this swivel seat to a converted vehicle, the price of the carseat doesn’t seem so bad. Although it has some quirks that I have communicated to the manufacturer (such as the seatbelt cover which is far too large and hard to manipulate and the tray which needs a cup holder and is impossible to clean), it has been great for Maya and for us. As an added “bonus” it has built in speakers.
7. Serta’s Adjustable Bed Base-Maya enthusiastically has renamed this her “Bower bed” after her buddy Bower (pictured below) who has one just like it. An adjustable bed is great for indigestion, reflux, colds, and positioning flexibility. And for the caregiver, this product is a huge back saver that does some of the lifting for you. We purchased this as an alternative to an expensive hospital style or more comprehensive special needs style bed.
8. Special Tomato Soft Touch Sitter-After Maya outgrew her toddler booster seat with harness we had limited options for her to be able to sit at our bar height kitchen counter. Lightweight, portable, easy to clean, and well-priced the Special Tomato Soft Touch Sitter has served us well.
9. LEVO sit-to stand wheelchair-Inclusion and independence. These are two biggies that Maya has experienced more fully since she began using this chair. She can bring herself into standing and clap and dance with her peers. She can also wash her hands at the sink and recently made a cooking video while standing by her dad’s side at the counter.
*Please keep in mind that at the time this was written not all sizes of this chair had a transport option.
10. TFH Pull bar and an adaptive swing-Maya loves to swing and as she has gotten older she became eager to swing on her own. Since her legs don’t allow her to swing with gusto she asked for something that might help. The day we installed the TFH pull bar was one of the most exciting of Maya’s life, offering her new independence and freedom. It also has helped her improve her bimanual hand and arm strength which has translated to improving her daily life skills.
11. Caroline’s Cart-I wish this was around when Maya was younger but I am grateful we can use it now. When she was a toddler I asked our PT for ideas of how to take her shopping because she always tipping over in the grocery cart. The suggestion of flour and sugar bags didn’t work so well. I remember the day her legs got stuck as I was trying to get her out of the cart. It was horrible. She was crying and I was heartbroken. Thank you to Caroline’s mom Drew Ann who has passionately brought Caroline’s Cart to market. I am unsure of the starting age for Caroline’s Cart but you may wish to explore the Leachco Prop R Shopper and the Wrap Strap both designed for younger children. Also some mom’s and children really enjoy babywearing.
12. Zippysack/Halo SleepSacks-Maya is unable to cover herself back up at night. This means that whenever she is cold, we are called to come back in and cover her up. We have found a couple of things that have helped us solve this problem. She used the Halo Sleepsacks until she outgrew them around age 5. Recently we found the Zippysack and that has been another great solution! This means at least one less trip to Maya’s room in the middle of the night!
13. Bruno Big Lifter car wheelchair lift-Why in the world did I wait so long for this? Having a lift in the back of the car has been fabulous! I always say how I can manage by myself, and “Oh, her wheelchair isn’t that heavy” etc. But now I don’t have to “manage” and we will soon (we have to bring the chair to the mobility dealer for bracket fitting) be able to transport her power chair without dismantling it and having two people load it into the car. I love that this lift takes up little room in the trunk so we still have all of our storage space when the wheelchair is not in the car.
14. Adaptive Trike-I was just saying last week how I couldn’t believe our therapist was bold enough to have Maya try riding a trike a few years ago. She couldn’t sit up independently so I wondered what her therapist could have been thinking? She saw my face and said, “You never know.” I would have never believed it had I not been there but it turned out her therapist was right and Maya was on her way to exploring life from the seat of bike. Riding a bike is a right of passage and the day Maya took off on her bike was a beautiful experience for all of us. It also helped her developmentally by giving her new opportunities to use her body, coordinate movements, and enhance her visual processing skills. Check out the CP Daily Living website to learn about companies and resources for purchasing adaptive bikes and trikes.
15. Kaye Bolster Chair-The first Kaye bolster chair we used was borrowed for several years from a local therapeutic pre-school. At the time it was the only chair Maya was able to comfortably sit in with stability and perform activities. It also has wheels so we can move her throughout the house. It’s well made, adjustable, and offers an alternative seat to using her wheelchair at home.
16. Portable suitcase toilet-“Travel Potty”-This is for younger kiddos but, as Maya’s grandma reminded me, came in very handy when she was younger. Lightweight and portable, it is convenient to use in a stall where the toilets are too high, if your child struggles with balance, or for use in the back of a van. This was a product that got a lot of use from our family.
17. Custom changing blankets-Finding yourself in a restroom with a child or adult who has outgrown changing tables is very tough. I was grateful I found an e-bay seller in the UK willing to ship to the US who recognized this need and made us a large changing blanket that was easy to carry and clean. I haven’t come across a US-based seller. If you are in the UK here is another option offered by an Etsy seller. **Update a follower found a US based Etsy seller selling extra large changing mats as well.
18. **Coffee Maker**– Ha-ha! Maya’s dad offered this suggestion. I never drank coffee until Maya was born. She has always had insomnia and since we often still get up with her several times a night our coffee maker is our dear friend.
19. Maya’s adult mentor Dartania– Maya has an adult mentor “Dart” who also has CP. She has been in our life now for a couple of years and has become a member of the family. We have watched a beautiful friendship emerge between them. Maya consults with Dart on many topics and confides in her about her deepest and most frustrating emotions related to having CP. I have been brought to tears (sometimes laughing and sometimes crying) hearing Maya and Dart navigate these waters together. There has been so much stress relieved by Maya having Dart as a mentor. I think they both look forward to their time together. Dart has been available to support all of us by providing hope, insight and love to Maya and our entire family.
The CP Daily Living equipment section has a list of resources and information about equipment exchanges, re-use programs, and charities offering funding for equipment purchases. Social media has brought the disability community much closer together. There are many opportunities to share resources and post ads for equipment you are seeking and recycling. We found Maya’s power chair sitting in a back hallway of our therapy center. It turned it needed a new home and was donated by a local family whose son had outgrown it. Although it was several years old and needed a new battery it works great! We have also benefitted from borrowing equipment from a local therapeutic pre-school and connecting with some talented carpenters. You also may wish to find out if you have a local wood-workers guild willing to donate their time and/or resources to your family. -Michele
27 comments
Kelly weekes says:
Apr 26, 2015
I have seen first hand how these items have given your family duopoly and made your life somewhat easier. What a great list for other families!!
Kelly
Sonia M. Rivera says:
Apr 26, 2015
The list is wonderful, but the real question is how do you afford it? If you get help, please let me know how to get in touch with these people…I am a Grandmother with a sore heart watching my daughter(which only complains about her back) care for my 15 year old granddaughter that has Angelman Syndrome…Thank you and Peace…
Laura says:
Apr 26, 2015
As the parent of a child with autism I can relate to what a difference the right equipment can make. Thanks so much for sharing these. I’m interested in the zippy sack, as we have the same problem with getting up to cover our son back up in the night. I also love the idea of an adult mentor. My best wishes to you all, Laura
Anonymous says:
Apr 26, 2015
Thank you very much for this list. Im a step mommy of an adorable cp kid. 😉 I’m always looking around for things like these.
cp daily living says:
Apr 26, 2015
Hi Sonia. Many items are covered by insurance, some we have paid for out of pocket, while others have been borrowed from our local therapeutic pre-school. The all-terrain chair was an out of pocket purchase and we saved quite a bit by purchasing a demo. We look for items that will provide us with longevity, and provide more than one function and consider them an investment. For instance the all-terrain chair will give us about 8 years of growth room. Some people/families simply don’t have the money for out of pocket expenses which is where equipment swaps/exchanges on the internet, and often through state agencies or local re-use organizations can be helpful. Many families also hold fundraisers especially if there is a special piece of equipment they would like or need to purchase that is not covered by insurance. I keep a list of some resources in the equipment section of the website including some relief/funding agencies. It is also particularly helpful if you live in a state offering Medicaid/TEFRA. Here is the link where I have state by state resources listed: http://cpdailyliving.com/types-of-equipment/ All the best, Michele
cp daily living says:
Apr 26, 2015
Oh, and we got her current power chair after a message went out on fb from our local parent to parent org that some equipment had been donated and was free to whomever wanted it!! It was dirty and needed a battery but it works great!! It was headed for the dumpster…
Sonia M. Rivera says:
Apr 26, 2015
Thank you for your quick reply, Michele…It’s time this Grammie roll up her sleeves and start getting help for my girls…I let you know how it goes…Peace…
Juli Culver says:
Apr 27, 2015
Hi, Thanks so much for sharing your trade secrets! I wanted to put my 2-cents in on the Rifton toileting system. We have one too but find that it does not work well for very high tone types, or maybe just boys. My sons legs pinch the pee-guard so tight that we struggle to get him on and off. The pee-guard comes off too easily and therefore almost every time we use it we end up with pee all over the floor and ourselves.
kathrin says:
Apr 27, 2015
fantastic summary of what great items are out there for our special kids. Thank you for taking the time and sharing! Will definitely look a few items up. All the best for you and your beautiful family
Gayle Paris says:
Apr 27, 2015
Our Abby has moderate CP so many of these aren’t relevant to us, but oh the day she got her adapted trike! I cried buckets watching her do one of those things we all imagined we’d teach her to do but when the diagnosis came, we never dared hope she’d manage!
The other thing I thought whilst reading, is just how much all of these would cost. It doesn’t bear thinking about and I do feel for those who could benefit but can’t due to cost. for those in the UK reading this, none of these would be provided by the Government and what you get is very basic. However, the good news is, there are many organisations who will charity fund these sorts of things. Great list and three cheers for the coffee maker 🙂
Danielle Campbell says:
Apr 27, 2015
Hi! Your blog has been so helpful! Do you happen to have any photos of Maya in the recaro carseat? We recently got one, and I just feel like I’m doing it wrong. The seatbelt just seems harder than it should be to thread through the ‘shoulder part’ holder and then to reach across to buckle. It has been a lifesaver for my back, but I just feel like a dummy everytime I buckle it. There has to be an easier way!
cp daily living says:
Apr 27, 2015
Hi Danielle! I am thrilled that you have found the site helpful. I don’t have any photos of her in the seat but I remember in the beginning I was really confused. I don’t know what I used to do but I clearly remember having an aha moment with the threading part. The seatbelt should remain threaded through the shoulder part holder (most of the time) so that you just have to pull it down in the “track” each time. If you like you can send me a video of what is happening. You can email me at cpdailyliving@gmail.com.
cp daily living says:
Apr 27, 2015
Hi Gayle! Thank you for sharing your comments. I am thrilled to hear that Abby is doing better than you expected. There is just something about seeing our kids on a bike isn’t there? Yes, the cost of equipment and access to it is problematic all over the world (in varying degrees). I don’t have a good answer to this problem but I am encouraged by the advocacy efforts I see emerging regularly through social media. Increasingly I am seeing charities pop up dedicated to bringing equipment and funding to those people who need it, robust participation in equipment exchanges and re-use websites and recently a couple of new websites providing construction designs for building equipment. I hope the trend continues and more cost-effective and innovative ideas reach everyone who needs them. -Michele
cp daily living says:
Apr 27, 2015
Thank you Kathrin for stopping by and leaving these kind words. -Michele
cp daily living says:
Apr 27, 2015
Good luck Sonia!! -Michele
cp daily living says:
Apr 27, 2015
You are so welcome! -Michele
cp daily living says:
Apr 27, 2015
Hi Laura! Thank you for stopping by and sharing your thoughts. I hope the Zippy Sack works for all of you too. Yes, I have become a huge fan of mentoring. I wish there were more widespread formal mentoring programs for kids with disabilities. All the best to you and your family. -Michele
cp daily living says:
Apr 27, 2015
Juli I am so glad you said something about that! I completely forgot that we had ordered the pee-guard in addition to the bowl adapter. So obviously we have a difference in sex but we struggled with it too regarding transitions. I completely forgot to mail Rifton! Did you contact them? If not, let’s both do it. They are an excellent company and very responsive to consumer feedback. What are you doing now when your urinates? I think they could tweak it so that the pee guard can be attached once the child is on the seat and prior to them getting off. Fortunately we found that that bowl adapter works almost every time for us without the pee guard provided that our daughter has her feet positioned well on the foot plate and we use the ankle strap. -Michele
Juli Culver says:
Apr 28, 2015
Hmm, I don’t remember the bowl adaptor- I’ll have to look that up and see if we need it/have it/whatnot. For now I asked our rep if we could drill a hole and screw it onto the base without voiding a warranty and he said we could.
Also, to note as well- since I last responded our son actually fell off the toilet, tipping the whole unit on top of himself since he was buckled in. I had left the room so don’t really know how he did that, but we’ll be ordering the permanent mounting kit. (Fortunately he landed in the seat of a Tumbleform chair so no injuries.)
It is a good suggestion to contact Rifton and I think I will. Typically I have really enjoyed their products. The activity chair is amazing and one of our “life-savers”.
Kerry Mellin says:
May 29, 2015
I am loving the TFH Pull Bar and Adaptive Swing! What a wonderful idea and thanks for sharing this fun product!
cp daily living says:
May 29, 2015
I am so glad you like it!!
Mate says:
Nov 26, 2015
I liked all the special needs products and toys.
Nikia says:
Jun 6, 2017
Wow! What an amazing article. My son will be 6 this month and many of the products that you listed are solutions that I have been looking for. Your family is beautiful and I thank you for taking the time out to write this article. Betlst wishes to you and your family.
chandrakant daki says:
Jun 28, 2018
Wow! What an amazing article. My daughter will be 13y this month and many of the products that you listed are solutions that I have been looking for.
thanks for sharing this fun product!
chandrakant daki
Erin says:
Dec 11, 2019
I needed to write a comparable (or at least it seems comparable, depending on the information given) research newspaper back
in 2015 when I was a pupil. Gathering the required information was rather hard and
hard. But you were able to reveal the topic very
accessible and understandable. Anyways, it was intriguing to
refresh several things and find out something new.
Jamin says:
Jun 15, 2020
Thank you for this list.
For the swing–how did you attach the pull bar?
cp daily living says:
Jul 26, 2020
Hi there! I am so bummed to report that they no longer offer the pull bar in the US. I am not sure why. -Michele