The saying “necessity is the mother of invention” is often used and I think this blog is a fine example of parents finding fantastic solutions to problems when it comes to access and equipment.
In our family we have been lucky to have a Grandad who is good at carpentry so he has made corner chairs, ladders, standing boxes and many other pieces of equipment. This has saved us time on wait-lists and lots of money. Hubby is also very handy so he has been able to wield and use his skills to build or modify equipment for BJ. I recently put a call out on our facebook page for families to share their solutions and designs for equipment or ways to make therapy more fun. We had a great range of ideas sent through which I have now collated into this blog. I would like to say that these solutions have suited the families that have submitted them. You should either seek advice from your therapist or use your own judgement as to the suitability for your family member. Some of the suggestions are unsuitable for children who put things in their mouth.
ADAPTED BEACH WHEELCHAIR
Thanks to Susan for sharing these photos of her daughter Gracie using a beach wheelchair which their family adapted to make going to the beach possible. Gracie’s family live only minutes from the beach but for 7 years they only visited it 3 times. Each time they visited they had to carry Gracie and leave her on the sand which was far from ideal. Susan, Gracie’s mother, found a second hand beach wheelchair for sale locally and bought it. It was originally $4500 but the second hand price was $1800.
As to how the adaption came about, Susan explains, “The chair swamped her and wasn’t supportive enough and the straps couldn’t be tightened any further. So I measured it up and found a commercial booster from Kmart that fit. Only $90.” Gracie is 9 years old but only small for her age.
Susan says, “now we can go (to the beach) every day if we want.”
Thanks to Anne who shares her tip for “a little homemade sleigh for our 5 years old daughter with CP. We live in Canada, so we have to deal with long winters, and… snow is not exactly wheelchair-friendly. So we bought a cheap sleigh in a generic department store and screwed an old children car seat on it. We can now have fun in the snow, and even go skating!”
ADAPTED TRAVEL BED
There are many obstacles when travelling with a disability and I’d like to thank Jayne who sent me a message sharing the bed adaptation she has made for her daughter Jess.
Jess sleeps in a hospital bed at home with her head raised as she can’t sleep flat in a regular bed due to the risk of aspiration. Jayne says “this makes it pretty difficult for us to have a night away from home. I saw this camping chair in a catalogue recently and thought we could make it work as a bed for Jess. I got some high density foam cut to fit the chair and made a cover for it. Jess LOVES her travel bed and sleeps really well in it, we even tested it out by taking her on a 5 week road trip. The bed/chair folds flat and even with foam on it, it folds flat enough to store easily in the van. I wish we had though of this years ago!
Jayne says she “got the chair from Rays Outdoors (although have since seen similar ones at Anaconda), It’s called Wild Country Mesh Lounger and I go it on sale for $60. The high density foam was cut to size and cost me about $20. The white piece in the photo, above her knees, is a knee block, it’s part of her symmetry sleep system we use to keep her hips aligned in bed.” In the US these chairs are known as a Gravity chair I have been told and are available at many Walmart, CVS Pharmacies, Costco and Bi-mart stores.
ADAPTATION TO STOP FEEDING TUBE LEAKS
Rhiannon has shared a solution she found to stop leakages on an opening port on a feeding tube. I use this (see photo) its called a ferrite to cover the med port on my daughters feeding tube this stops leakages and her opening the port.. These are available at Jay Car electronics for about $11. You simply remove the magnet from both side of the ferrite. Rhiannon says, “It was by chance but has saved many sleepless nights of changing bed sheets and loads of washing”
Thanks to Amie for this sitting activity. “I just wanted to share a therapy tip that we used with my middle son, who has CP. His physical therapist showed us this at her office, although she had the beans in a small plastic child sized pool (mostly because she used it for children of all sizes). She told us to go buy a plastic “sweater storage box” that Nick would fit in, and fill it with uncooked dry beans. She said that the stimulation from the beans was what made him hold his back straight enough to sit. He literally could not sit at all at this point, without something directly against his back, unless he was sitting in dry beans like this. Doing this several times a day allowed him to strengthen the muscles well enough to teach him to sit completely unassisted! We used several bags of pinto beans for his box, but it was still very inexpensive, and definitely worth it!”
Thanks to Shawna for this solution – “I would love to share our idea with as many people as possible! It is so frustrating that things cost so much when they hear the word disability or special needs. This saved us a LOT of money! We took an expired car seat and made a swing out of it! We removed the base off of the car seat and any extra pieces we could remove to make it lighter and not so bulky!”
HAND FUNCTION MOTIVATION
Encouraging BJ to get a pincer grip has required some inventive methods. Cheese is his favourite food so an Occupational Therapist suggested we put it in a fishing tackle box in small pieces. BJ can’t use his whole hand and the motivation of cheese was enough to get those fingers working. This would obviously work with chocolate and other foods too.
PORTABLE TOILET TIME SIGN
Thanks to Megan for this tip. If a child is unable to sign toilet this is a great solution. “Slap band watch with clock face removed, toilet symbol inserted for child to touch when needing toilet”
HOMEMADE WHEELCHAIR RAMP MODIFICATION
I was impressed by another family’s homemade wheelchair ramp modification that I spotted at BJ’s school. The Mum was finding it heavy lifting the ramps in and out of the van each day so her husband came up with a clever solution which cost around $40. By fitting some carpet to protect the bumper, a bracket and a few other bits the ramp was now permanently attached and could flit down with little effort in a few seconds. Thanks to Annette for sharing this idea with me last year.
GAVIN’S CHEST STRAP
Thanks to Michelle for letting me know about Gavin’s chest strap and to Kate from Chasing Rainbows who created the strap and has allowed me to share it. Kate says, “Of all the things we did with Gavin, the thing that gets asked about, commented on and complimented the most is his homemade chest strap. I wanted something to hold Gavin upright since he had such low tone. It started with me wanting him to sit in a chair at our art table. I told my Mom what I wanted – and she created this chest strap! You can see it wrapped around his chest in this photo of him… at our art table! It worked perfectly.” For the instructions on how to make the strap head to Chasing Rainbows page for the full details.
ADAPTED TOY KITCHEN WHICH IS WHEELCHAIR ACCESSIBLE
Thanks to Megan for this homemade adapted kitchen. She says, “shelving units from the reject shop and lots of creative thinking. Height of sink / bench could fit Cal’s wheelchair and walker underneath.”
A HELPING HAND WHEN PLAYING CARDS
Thank you to Cindy from Your Kids OT for this tip for playing cards. BJ loves playing cards but cannot hold his own set. Usually another person needs to assist him by holding the cards. This is a great way for kids to play with more independence. To read Cindy’s full blog on this head to her website http://bit.ly/1rGs0EE
A GAME TABLE
Thanks to Megan for this idea, allowing play while doing some sitting practice. Using a cheap exercise step elevates games to the right height for play.
HOMEMADE FEEDING PUMP BAG
Thanks to Samantha for sharing this solution. She explains, “As Chris is now on a feeding pump and we don’t get funding for the pump bag (which doesn’t work for us anyway) I got a cheap insulated lunch box, sewed a clip in the top and put a hole in the bottom to hold the feed bag and made a tote bag with a window for the pump, it works for us and one of the mums from his day program wanted to know where I got it. Photos above are of feeding bag and pump bags, small for joey and large for e pump.”
HOMEMADE FINE MOTOR ACTIVITIES
Thanks to Megan and model Cal for these homemade occupational therapy activities. Megan used “box velcroed to tray. Holes poked in top with different length and textured ribbon threaders through. Child has to grab hold of ribbon and pullThe photo above was ribbons / strings attached to bottle tops. Drill holes in bottle tops and tie ribbons on. Knot other end of ribbon behind box so it can’t pull through.”
A SWITCH ADAPTATION SOLUTION
Thanks to Beth for this tip. “The picture shows the back of one of our switch toys. Since the commercially available switch toys are all expensive and babyish, we just buy regular, age appropriate toys with batteries and use battery interupters (about $13 online) to make them switch accessible for my 5 and 7 year old girls. For toys/equipment that use power cords instead of batteries, we use a Power Link.”
HOW TO SWING IN THE LOUNGE ROOM
Thanks again to Beth for this tip ” This picture shows our indoor swing. We have 2 different swings – a hammock and a platform. Both are hung from a doorway swing frame (19.99 from funandfunction.com) with rappelling cord from hardware store ($3). The actual swings can be bought anywhere. I am also thinking of getting an inflatable raft with sides and using it as a swing option, too.” Another parent shared that they have an Ikea swing which they hang from their hoist track for their son.
ACCESSING ACTIVITIES BUMBO STYLE
Thanks again to Megan and model Cal for sharing a couple of different ways to use a Bumbo seat for fun. Megan says she used the ” Bumbo seat with large wooden height adjustable tray. Secure elastic with items attached for child to play with so that they don’t fall off tray and water play fun”
CONNECT FOUR GAME – GOOD FOR HAND FUNCTION
Thanks to Samantha for sharing a game she has found good for her son’s hand function. They are now working on trying to get the pieces out again.
Thanks to Megan and Cal for another great idea. Megan explains how it works, ” this is a Steelcraft highchair approx $99 from big w – legs cut off to use in sandpit with tray.It provided seating support and allowed feet in sand and the tray gave correct height for sand play with hands. Great for sibling play”
A FANTASTIC FIRST SWING
Megan shares, “standard fisher price kiddies swing with extra padding down the sides – velcroed in to give extra support.” BJ also had this swing and it was fantastic. I would say this is a great present if someone is unsure what to buy for a child with special needs.
CATCHING A RIDE
When AJ was little her legs would get tired so we found that attaching a buggy board was a great way of her catching a ride and solving me carrying her on my hip while pushing the chair. I am sure this could be easily made with a piece of timber and a couple of wheels.
This is a seating solution we made to make BJ more comfortable when flying on long-haul flights. Although we found it great on the plane (pre-approval is required to use it on a flight) it would work just as well in other situations. We built up the sides so it hugs his hips and built in a pummel to keep his bottom back. The memory foam on top was to make it comfortable for the 14 hour flight.
It is often tough finding bikes and ‘regular’ ride on vehicles that work for a child who cannot sit. Megan shares two of her son’s vehicles and how they worked for him. Megan explains the trike on the left is a “‘smart trike’ which provided enough support for our son when he was younger. He still can not sit without support but this bike provided great support” The car on the right worked once Megan used a “Cot sheet to give extra support – tied around Cal’s chest and tied to handle of car” For more of Megan’s great ideas you can head to an album she has made on her facebook page
There are now good tandem bike options like the Weehoo but before they were available Hubby used an old sebel school chair (plastic school seat) and attached BJ’s car seat harness (safe and sound ‘H’ harness’), he then welded it to the standard tag-along. It really needed a foot-plate solution but we never got around to that. That arrangement saw the boys riding through the bush, along paths and even in the wet sand for many years.
AVOIDING DAMAGED WALLS WHEN LEARNING TO DRIVE ELECTRIC WHEELCHAIR
When BJ was learning to drive his first electric wheelchair we had marks and gyprock off most of our door frames. While we were thrilled he was so enthusiastic about his new skill I would have loved to have known about the above idea to save the walls. Caster wheels attached to the footplate stop the metal foot plate making contact with the wall. While there will be some marking the gyprock should stay in tact.
Thanks to Natalie for sharing a couple of books she found very helpful. Here is what she had to say about them, ” I found the following books really helpful, inexpensive, they are paperback and available on amazon.
My child does not have Down Syndrome, she has Cri du Chat, I worked to move her through most of the gross motor program. The same series has books for autism. Regards. Natalie Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals. Winders, Pat C., Bethesda, MD: Woodbine House. 1997. Fine Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals Bruni, Maryanne, . Bethesda, MD: Woodbine House.1998. Early Communication Skills for Children with Down Syndrome. Kumin, L., Bethesda,MD: Woodbine House. 2003. Explains the role of a speech-language pathologist, how certain characteristics of Down syndrome affect speech and language development, and the stages of communication development.”
This blog would not have been possible without the generous contributions from our facebook community. We thank you all for sharing your ideas with the hope it will help others. I would love to keep creating these blogs so please send any suggestions to me, either via personal message on facebook or email at [email protected] Thanks again to all the lovely families who have contributed to this blog.
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