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