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.

Meet the Researcher – Zoom Webinar Series

Join us on Thursday, April 21, 2022 at 6pm Eastern time as we host researcher, Dr. Rebekah Charney.

This event has been postponed due to illness – stay posted for updates on the new date/time.

Dr. Charney is a developmental and stem cell biologist currently working as a postdoctoral research fellow at the University of California Riverside. Dr. Charney’s research focuses on the formation of cell types during early development and how changes in these processes can lead to birth defects. Her work makes use of human pluripotent stem cells to understand the formation and differentiation of neural crest cells – an embryonic stem cell population that contributes to a wide range of cell types throughout the human body. Dr. Charney received her Ph.D. from the University of California Irvine in 2016. She is the recipient of multiple early career awards from the National Institutes of Health, including a Ruth L. Kirschstein Individual Postdoctoral National Research Service Award and a Pathway to Independence Award, and was the recipient of a 2015 K. Patricia Cross Future Leaders award from the Association of American Colleges & Universities.

Watch all videos from the “Meet the Reasearcher” Series

Life Hacks for MWS families

Released April 1, 2022

Tips for the Bathroom

  • In the bathroom, put a basket of toys on the floor – if your child bends over, it helps them use the bathroom
  • Give your child some water to drink in the bathroom to help them need to urinate
  • Use a spray bottle with warm water or have water running to help the child urinate
  • Pants with elastic waist can help children who find it difficult to undo buttons and zippers
  • Use a deflector on the toilet to ensure that the urine goes into the toilet
  • There are a lot of new companies that sell adaptive clothing
  • Some children suffer from mild to severe constipation – a physician should be notified of any problems.
  • Fleet liquid glycerin plunger suppositories are better (bowl movement happens immediately) than the old-fashioned stick suppositories – because they don’t have to dissolve. Always check with your child’s physician before using any over-the-counter medications.
  • Some children use colostomy bags – the 2-part system seems to last much longer

Caregiving Corner

Released April 1, 2022

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

Communication 

  • Nonverbal does NOT mean that your child cannot communicate and that they don’t understand – you have to find a way to give them that communication – and there are many avenues and different ways to communicate
  • Start communicating now – as in immediately
  • The Hanen Centre provides a number of courses and supports
  • Build on whatever type of communication that your child can use
  • Help your child find their voice
  • Some children find it difficult to use communication devices – a tactile button device might help
  • Green circle or red x – place on table for yes and no
  • Communication can be very low tech
  • It is important for children to learn cause and effect – you need to find what will motivate your child to want to communicate
  • Some children are deaf/blind – which will allow them to access more services
  • Eye-tracking communication might be helpful – Eyegaze. Some found it was very hard to control. Some of these devices (Toby Eyegaze) are very heavy – can download customized language onto a tablet. Some of the Eyegaze devices can be connected to a wheelchair. You can customize the icons and even their size.
  • Parents can either focus on only one approach or use a total communication approach with both high and low-tech resources: objects, communication develop picture cards, iPad with picture cards, some spoken language tactile approaches, using a sticky board with pictures/photos, plexiglass with Velcro that you can stick picture/photos to, make a little flip-card booklet
  • It can be beneficial to use a total communication approach because some families have tried only one approach and it did not work – then they had to start with all new modes of communication
  • Outside the US, check to see if there is a governmental (or NGO) that can help provide communication support
  • Sometimes programs outside the home (such as in school) have more success teaching children something new
  • It helps to read to your child every day – this will introduce them to hearing words and language and help children learn and understand how to communicate and use words and gestures.
  • Keep talking – if you don’t talk, your child won’t talk
  • Music and singing can also be very helpful
  • Find a speech therapist that is familiar with augmentative communication
  • Assistive Technology specialists can be very helpful
  • For some children, it is important not to change the placement of the pictures or words when using boards or booklets.
  • It can be helpful for the parents to use the communication tools, because the children will emulate the process – modeling is very important. Help your child learn how to get what they want
  • Include your child in the conversation when you go to the doctor – don’t just talk about them, include them in the conversation
  • Some children respond negatively when they are being talked about instead of being talked to
  • Some children can be very loud – they like to express themselves
  • Some children can really understand most everything you say (pay attention to what you say), but they have difficulty communicating back
  • When getting in the car, some children want to be told where they are going, or they become very anxious
  • Yes/no communication has many forms – 2 sided pictures, can hang on a yarn necklace – and even use right hand for yes/left hand for no
  • High-tech and dynamic communication devices are appropriate for children with even very limited communication ability – don’t think they are only for children that can communicate more
  • Teach the power of communication. Give your child a picture of a preferred object or action. Have them give you the picture or point at it and give them the desired object. Play over and over again.

One of the members of the Community Advisory Board, Carolina, shared a story:

At the first MWS Convention, there was a SLP talking about Augmentative Communication and she said to “Expect Excellence” all the time, meaning, set the bar high and let your children show you what they are able to do. That message has stayed with me forever. My daughter was very little, and I didn’t have expectations that she would communicate, and I was OK with that. Now she does. Not in the conventional way, but she does! And that’s what “total communication” is all about, so I don’t think it’s optional. In my opinion, we have to give our children all the options and let them show us how they will use them. Otherwise, we will be wasting time – precious time. As many parents have noticed, our kids will use and stop using things they learn. For example, Duda will only say “mom” if I am not around, because she doesn’t find it necessary to call me if I am there, but when I am not, she asks for me. She stopped saying “water” because now she doesn’t want to drink it anymore, so there is no need for that word in her vocabulary. She knows that “nomnom” means any drink or food, so she is not limited to only one thing. She says “nomnom” and walks to the fridge and chooses what she wants.

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.