Life Hacks for MWS families

Released March 1, 2022

Travel Tips

  • Take a travel bag with you on trips. Safeplace bedding.com provides safe solutions so your child does not fall off of a bed. You can strap this on to any size of mattress even air mattresses. The mission of Safeplace Bedding is to give the WHOLE family the joy of travel with a safe, affordable, and hassle-free sleeping solution for your restless special needs loved one.
  • Have a device that your child can watch in the car. Some kids love to watch basketball, golf, hockey, or other sports.

Toys, Touch, and Interactions

  • Some children love toys that spin or anything that they can chew on – hand held chewing toys can keep them entertained. For chewers, Ark Therapeutics makes a lot of different toys.
  • Some Therapists suggest using a small handheld massager to desensitize tactile interactions. Using a brushing technique with a special brush can also be helpful. Learn more about tactile defensiveness here
  • Some children really like touch and feel books, such as Melissa and Doug Poke and Dot books

Meals and Eating

Caregiving Corner

Released March 1, 2022

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

Counseling can help

We go through rough phases when our children are in the hospital – we don’t realize how traumatic it can be on our lives and physical health. Sometimes you don’t really realize how traumatic it is until things slow down.

Selfcare is very important

Selfcare is even more important when you care for others.

Journaling

It can be very helpful to write how you feel in the moment.

Get up and do something

Play a game with your child(ren) or family, go for a ride or walk, or just go sit in the sun. Working out can be especially helpful for serious anxiety issues.

Get away for a weekend when you can

Some families have friends or family that will stay with their children for a weekend, so they can get away as a couple. Couples need to have some time together.

Remember to have fun family time with everyone

This might be a family trip to the aquarium or park. Find something that your child enjoys and that the family can do as a group.

Pamper yourself

Get your nails done, get a massage, get your hair done – don’t forget to reward yourself for all your hard work. Go to a spa or just curl up on the couch and watch your favorite show. Get out in nature and go hiking. Being in nature can help you get your mind off of everything because you have to focus on the hike and trail.

Life Hacks for MWS families

Released February 22, 2022

  • Keep a backpack handy (by the door) in case of emergencies. In the backpack keep emergency medications, snacks, extra clothes, diapers, and small toys.
  • Purchase multiple copies of favorite toys and keep them in each room and the car – this will eliminate problems if a favorite toy is lost or misplaced.
  • When looking to purchase a new vehicle, make sure that the wheelchair easily fits.
  • To get a wheelchair easily in and out of a van, use a dog car ramp – they are much cheaper than ramps specifically for wheelchairs

Travel tips

  • Ask the hotel for a room with easy access and notify the desk if you have any medical emergencies, so they can make sure that all professionals can easily find your room
  • When looking for places to vacation, prioritize locations with a good hospital nearby
  • TSA Cares – this program will help passengers who need help going through security and getting to the gate: https://www.tsa.gov/travel/passenger-support

 

Caregiving Corner

Released February 22, 2022

The MWSF Community Advisory Board would like to share some age-based advice with our community:

Infants

  • It is important to enroll in Early Intervention Services as soon as possible
  • Connect with all the different types of Medical Professionals as soon as possible to develop a responsive Care Team: Primary Care Physician, Developmental Pediatrician, Physiatrist or Pediatrician, Cardiologist, Neurologist, Occupational Therapist and/or Physical Therapist, and Gastroenterologist. Some families may want to add a Naturopathic doctor if they are interested in natural and CDB options. See https://www.nhand.org/2016/02/22/the-difference-between-naturopathic-medicine-and-homeopathy/
  • Learn about the different types of formulas – some have extra calories for underweight infants
  • Many MWS infants are underweight and small, be sure to have a copy of the MWS Growth Chart
  • Don’t be afraid to find a new doctor if your current doctor is not making needed referrals (for example, handicap placards and wheelchairs, etc.). Usually this is the pediatrician, some families sign up for Complex Care services
  • The ARC provides many resources, including information on local birth-to-3 services. Click on “find a local chapter” to learn about services in your state.
  • Some families prefer to use specialists that all work with the same hospital, but other families find the specialists that they like the best and often receive care at multiple hospitals.
  • Often, children with MWS will see their specialists more often than their pediatricians.
  • Ask your physicians if you can use the back door so your child is not exposed to sick children in the waiting room.

First 2 years

  • Many children with MWS are in and out of the hospital many times during the first 2 years for various procedures and surgeries. For many MWS families, these greatly reduce after the first 2 years.
  • Seizures are a main concern for MWS families. For information see the MWSF Youtube channel for a recording of a seminar: Epilepsy and Seizures in Mowat-Wilson Syndrome

Starting School

  • Many MWS parents experience a lot of anxiety when preparing to send their children to school
  • The very first IEP meeting is crucial. Ask for a family advocate to help you during the meeting. Some school districts only provide support if you ask for it – learn to advocate for your child.
  • Families can call the Board of Developmental Delays to receive help. In some areas, this is called “Healthy Grow”.
  • Some families benefit greatly from having therapy services provided in school, on consult, and out-patient.
  • Ask for a one-on-one aide in school if needed. Many parents have learned that it is crucial to ask for these services at the first IEP meeting. Once a child has been in school for a while, it may be difficult to get new services approved.

MWS Family of the Month – the Donlevy Family