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Getting a CASK gene diagnosis: The diagnosis is the first step on a long road to acceptance. Everyone deals with the news differently but here, at CASK Research Foundation, we want to tell you that you’re not alone and there is light at the end of the tunnel.

We asked CASK parents what they would say to a newly diagnosed family. Below are their top ten tips:

  1. Always trust your feelings, doctors are not always right. Seek a second opinion if your gut tells you to.
  2. Educate yourself on the diagnosis but don’t get let it define your child and don’t restrict your dreams to the diagnosis.
  3. Stay positive: Your child may do more than was ever thought possible. Never give up!
  4. Try to live day by day celebrating every small accomplishment.
  5. Worrying about the future and the ‘What ifs’ will make you crazy.
  6. Advocate, advocate, advocate! You don’t like a doctor? Find a new one! Your gut tells you that a therapist isn’t a good fit? Good bye!
  7. Give yourself lots of grace. It’s ok to have sad, hard days. But also remember that being sad won’t do much for your child or for yourself.
  8. Remember that your child is still the same after the diagnosis, so give them all the love they were supposed to get and they deserve! Find your support community!
  9. You will be surprised how wonderful and fulfilling life with a child with disability might be despite all the challenges!
  10. The sooner you start with therapy the better and don’t be afraid to try different therapies as you never know what will click with your child.

Advice to heed…

“We were told our daughter would never walk and she runs and surfs and swims and skies the limit!”

“It’s okay to grieve and grief should be expected. We think that we need to immediately become super parents that we push our grief aside. It’s okay to hold space for it and do what you need to do to work through it, and that will look differently to everyone. But if you don’t honor it and work through it, it can consume you. So cry, kick, have a glass of wine, talk to someone or whatever it is you need. It’s a life changing diagnosis and it’s okay to not be okay at first. Give yourself a minute before you move forward.”

Follow other families…

Some of our families blog on social media such as Wellies and Willow. Follow them and other families that use the hashtag #kickingcask for support, advice and friendship.

 You can also read family stories here.

 

 

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CASK Research Foundation, Registered CIO, charity no. 1197434