Life Hacks for MWS families

Released May 1, 2022

  • Take the time to regularly check all the fitting and condition of all equipment that your child uses. Some get old with wear or may stop fitting as well as your child grows.
  • There is a Facebook Group that lists handicap vans that are for sale
  • Look for Facebook Groups for equipment and supplies swaps
  • This Facebook Group has a lot of fun things on this page and can be very inspiring and also has great tips and tricks

Caregiving Corner

Released May 1, 2022

The MWSF Community Advisory Board would like to share some tips and resources for caregivers:

Mobility and Stability 

    • A stander can be used to help children stand –
      • this type of stand helps children build up their leg muscles
    • Gait trainers are also very helpful
    • Rifton also sells bicycles
    • Hippotherapy and Horse therapy can be very helpful
    • Physical therapy can help improve mobility and stability
    • Start physical therapy and occupational therapy as soon as possible. The Hughes family started Jadynne in physical therapy at 9 months and occupational therapy at 12 months.
    • Invest in therapy foam mats/climbers for your home, so that you can implement what your child is doing in therapy at home.
    • Frequently take your child to parks and areas that allow your child movement as a part of play
    • Enroll in Mommy and baby dance classes. Its great for movement, flexibility, and stretching
    • Utilize both school-based services for PT, OT and Adaptive PE as well as private services (using medical insurance) for PT and OT. Our children can never have enough therapy. The more the better.
    • Encourage your child to move and walk whenever possible.
    • You can definitely utilize your medical insurance to receive wheelchairs as well as tilt strollers for kiddos who have outgrown their strollers. Tilt strollers are super convenient for our kiddos who tire out and need to rest, nap, need pull-ups/diaper changes as many will tilt to a flat surface. Strollers are also great for children who tend to get away when they are not closely watched.
    • Check to see what types of services the state you live in offers and what they offer specifically for people with disabilities. Every state/country, even local counties offer different programs for those with disabilities. Some offer copay assistance, programs your child can attend, etc.
    • Medicine Balls, Peanut Balls, trampolines, etc., are great for core strengthening which will give added support for mobility.
    • Use Amazon: you can order all of kinds of physical therapy products to encourage mobility. Don’t forget that when you use Amazon Smile, you can also help support the Mowat-Wilson Syndrome Foundation.
    • Music and Dance: Many MWS kids and adults love music and are music driven. There are great songs to use to get our kids moving. Freeze Color Dance is a great song. You Tube has many songs you can play to get your child up and moving or dancing.
    • Water/Swim therapy can be very helpful.
    • Don’t leave therapy up to just the therapists and therapy sessions. You have to implement therapy at home in everything you do. Make playtime a therapy session. Your child will never know they are actually working when it’s incorporated into playtime. Make it fun, exciting, encouraging and celebrate every win, small and big.
    • NEVER GIVE UP!!!! NEVER!!!! Persistence and Consistency are vital, and always remain Hopeful.