Caregiving Corner

Released September 1, 2021

The MWSF Community Advisory Board meets every month, and in August, the discussion was all about advice for caregivers:

Don’t be afraid of the diagnosis

It can be very scary to receive the MWS diagnosis, but there is a community here to support you. Seek support and information about MWS – through the MWSF website and Facebook groups.

MWSF Facebook page

Life With Mowat-Wilson Syndrome

Mowat-Wilson Syndrome Family

Mowat-Wilson Syndrome Community

It is comforting and helpful to hear the stories that other families have gone through, and it is helpful to know that you are not alone. Your child will probably have many diagnosis, but they do not define who your child is, or what your family will look like. The diagnosis is not meant to be any type of label or restriction, it is there to guide the medical community in how they can help your child the best and understand their needs. The MWS diagnosis may also help your child obtain critical services. Last month, the Tolman Family described the MWS diagnosis as “the golden ticket”.

You know your child better than anyone else. You are the expert on your child – and a diagnosis will never change that – and it certainly won’t change the love in your heart for your precious angel!

Remember to laugh

Release the stress and let the humor in!  VeryWellMind says “One of the main goals of finding the humor in a stressful situation is to use the humor to create distance between yourself and the stress you are experiencing.” Laughing can help you keep your perspective.

Release your expectations – things will happen as they happen

It is important to stay realistic. Every child develops differently, and if we hold onto our expectations, then we miss the opportunity to celebrate the small gains.

Suggestions for self-care

  • Yoga can help relieve stress
  • Staying on a work-out schedule and having the support of a work-out community can help you make exercising a regular routine. Taking regular walks, even for 10 minutes can really help relieve stress.
  • Sometimes, it is OK to leave the house messy for a night – pamper yourself when you need to
  • Ask for help and accept help