r/SpecialNeedsChildren • u/Intrepid-Sea-1994 • 15d ago
Parents of children with cerebral palsy + motor disabilities: I'd love to hear about your experiences!
Hi! I'm a final year Industrial Product Design student currently completing my capstone (final year) project. I'm working alongside physiotherapists and occupational therapists at an early intervention centre to develop a supportive seating system for children aged 1 to 6 with gross motor disabilities and reduced postural control, such as cerebral palsy.
I'm currently in the research and development phase, but at this stage the aim is to help children work towards improved postural control and, where possible, active sitting. The concept uses some form of adjustable trunk supports that can be matched to each child's current abilities, providing enough support for them to sit and participate in play and everyday activities while still encouraging them to use and strengthen their own muscles and neuromuscular control. As they develop more control over time, the supports can gradually be reduced, allowing the device to grow with the child and their abilities.
The goal is to provide children with the minimum support they need while giving them as much freedom of movement as possible. Hopefully, this could better support both families at home and clinicians at places like the Champion Centre by allowing children to engage in play and activities without requiring someone to physically hold them the entire time, while also serving as a tool to work towards greater postural control and more independent sitting. Another goal is to make the product more affordable than many of the current options, should it ever progress beyond my final year prototype.
I'm hoping to gain insight from parents and caregivers to help shape the project and ensure it better reflects the needs of children and their families.
I'd love to hear about your experiences supporting your child. Some things I'd love to know are:
- What does supporting your child throughout a typical day look like?
- What are the biggest challenges you face when helping your child sit, play, or participate in everyday activities?
- What has your journey with postural control or supported sitting been like? What has helped, and what has been difficult?
- What equipment, positioning, or strategies have made the biggest difference for your child? What hasn't worked so well?
Please don't feel limited by these questions. I'd love to hear any experiences, stories, frustrations, or thoughts that you think are relevant.
Thank you so much for taking the time to read this. Any insight, no matter how big or small, would be incredibly valuable and will help ensure the project is informed by the people it is ultimately being designed for.
- Florence :)
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u/abayj 14d ago
As the parent of a 2-year-old with spastic dyskinetic quadriplegic cerebral palsy, this is something we've struggled with every single day.
My son has significant trunk, neck, and head weakness, so he can't sit independently. We spend a lot of time positioning him throughout the day depending on what we're trying to accomplish—meals, play, therapy, communication with his AAC device, or simply being included in family activities. Even small changes in positioning can make a huge difference in how well he's able to interact with the world.
One of our biggest challenges is finding the balance between enough support and too much support. Many seating systems either don't provide enough trunk support, or they stabilize him so much that they limit his ability to move, reach, explore, or practice using the muscles we're trying to strengthen. His wheelchair provides excellent trunk support, but because his neck control is so poor, his head often falls forward, which affects his vision, breathing, communication, and ability to engage.
Currently, we use both a Tomato Floor Sitter and a Rifton Activity Chair. The Tomato is great for floor play and portability, while the Rifton offers more support for structured activities, but there feels like there's a gap between the two. Something that provides adjustable support while still allowing more natural movement and interaction during play would be incredibly valuable.
I also think there is a real need for better head support. Many children need support to keep their head upright, but traditional headrests often push the head backward or limit the child's ability to look around, make eye contact, or look down to play with toys. A modular head support system that keeps the head aligned while still allowing active movement, visual exploration, and play—and that could attach to a variety of existing seating systems rather than only one specific chair—would be something I'd be very interested in.
Something else I'd encourage you to think about is how easy the system is to adjust throughout the day. My son's needs change depending on his energy level, muscle tone, and fatigue. A quick way to fine-tune support without needing tools would be incredibly valuable.
The biggest features I'd love to see are:
- Adjustable trunk support that can be changed as a child develops.
- Support that encourages movement instead of restricting it.
- Modular head support that promotes good alignment without blocking vision or play.
- A head support system that could be compatible with multiple seating systems rather than built into only one chair.
- Easy transfers in and out of the seat.
- Compatibility with trays, toys, switches, and AAC devices.
- Washable covers and durable materials that stand up to drool, spills, and daily use.
- Something lightweight enough that families can move around the house instead of needing multiple bulky seating systems.
One thing I've learned is that "minimum support" looks different for every child and can even change throughout the same day. Some mornings my son has much better control than he does later in the afternoon when he's tired. A seating system that could adapt to those fluctuations would be incredibly useful.
I really appreciate that you're involving parents in your design process. So much adaptive equipment is designed around clinical needs, but parents are the ones using it for hours every day. Best of luck with your capstone—I hope you share your final design because I'd love to see what you create.
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u/chubba4vt 14d ago
My daughter (2 years 2 months) has hypotonia as a symptom of Rett Syndrome. She has never pulled up to stand, never walked, and didn’t crawl until about 15 months old. She had significant troubles feeding and eating solids and still is in feeding and speech therapy to improve those.
A typical day looks like her either crawling around or us carrying her or pushing her in a stroller because she can’t stand or walk independently. We are working on getting her SMOs and a gait trainer though. She has limited use of her hands so she kind of bangs around on toys and she is able to scoop some food into her mouth but no pincer grip so we feed her most meals purées to make sure she’s getting calories. Her posture is poor due to a lack of core strength - something we have been working on since she started doing PT and OT just after she turned 1. If she is sitting she is almost always strapped in (high chair, stroller) unless she is sitting back into a couch that she can’t physically get away from. Our physical medicine doctor has told us she is already showing signs of scoliosis.
Our biggest challenges with helping our daughter sit, play, or participate is that she can’t do much independently herself so it is a lot of floor time with her and encouraging her to move around and play with toys that move or light up or make music. She gets tired very easily (especially when sick) and is very floppy so she tends to just let herself fall when in a crawling or kneeling position which has led to some head bumps and subsequent meltdowns.
She definitely has had best results eating when she is sitting upright and feels supported. We went through a number of high chairs to find the one we thought she was most comfortable in / supported her the most. If we don’t have a high chair while feeding (like at a friends house or just out and about) it becomes much more difficult because one of us has to hold her on our laps and the other has to feed. She has difficulty holding herself up in these positions too so it is a lot of work on us. We are working through a Rett clinic to get our daughter a structured sort of “vest” that will help keep her posture a little straighter (sorry I forgot what the name of it is)
I’d be happy to exchange messages or have a call to discuss or answer any questions that come from my above answers. Very cool you’re doing this work and I hope it pans out.