Advice
“Most of the CASK mutations are de novo, occurring randomly. There is no answer to the question ‘why?"‘“ - Virginia, US
“They will make their own path. Enjoy every milestone. They will surprise you how strong they really are.” - Northern Ireland
“Don't forget your child is still the same baby you gave birth to!” - South Carolina, US
“Stay hopeful and seek the guidance and help from other parents going through the same thing.” - California, US
“Welcome in the CASK family! You are not alone! We are here to help each other.” - France
“Keep fighting!” - Norway
“Ask many questions, to know more the future.” - France
“Be patient. All children are different, even with CASK.” - Canada
“Ignore ‘milestones.’ Take everything in stride. Let your child lead.” - Canada
“Stay optimistic, because it is hard for them to know for sure what your child will and will not do.” - Virginia, US
“Stay Strong.” - Germany
“My advice would be to join a support group and get some first hand advice from other families, because there is not always a lot of relevant advice from professionals.” - Scotland
“Join the CASK Community on Facebook. It is enlightening, informative and joyous to see so many of our happy CASK children beating the odds ❤️” - England
“Deep breaths, and always remember this is just a stepping stone to getting more help.” - Iowa, US
“It would be important to find out the pathological phenotype of the child.” - Japan
“Focus on tending to symptoms rather than feeling overwhelmed or hopeless.” - Missouri, US
“Trust your instincts.” - France
“Get as much therapy as early as possible.” - Canada
“No kid is the same. Don't measure your child against others.” - Idaho, US
“There is a great word wide support group. Get involved in it.” - Oklahoma, US
“Try not to let the diagnosis overwhelm you. Find the support you and your child needs.” - Australia
“It’s okay to be scared and to grieve, but don’t accept that there’s a ceiling to what your child can learn.” - Florida, US
“These dark days will subside. You don’t know it now, but one day you will realize how blessed you are to have been given this child. You and your family can help her live a wonderful life, and she will make you all better human beings.” - Ohio, US
“Be positive and learn from other parents” - England
“Diagnosis does not define potential.” - Missouri, US
“Don't listen to what doctors say and be your child's advocate.” - Pennsylvania, US
“These CASK groups are great for information and are a lot of help.” - Scotland
“God gave you your child for a reason. Celebrate every day and every milestone, no matter how small it may seem.” - Tennessee, US
“Never be limited by what your child ‘should be able to do.’ They challenge and inspire us everyday.” - Australia
“Every child is different. Do what you feel is best for your child and take one day at a time.” - Virginia, US
“Courage and perseverance, persistent on requesting what you feel should help your child.” - California, US
“Your child will understand more than they can express.” - England
“We are on this path together. Have research started immediately.” - Australia
“Have faith.” - Virginia, US
“Love your child.” - Virginia, US
“Get all the help you can immediately. Time is of the essence for best outcome.” - South Carolina, US
“Be strong, keep faith! We received real angels to take care. This mission is our duty and honor.” - Brazil
“Let yourself feel sad when you need to. But also focus on the fact that they're here with you now and enjoy being with them. This is their life. Their life may be different, but it's not better or worse than any other life. No one wants to be around someone who's always feeling sad for them.” -Utah, US
“Love their child anyway and get support.” - Israel
“Explore all possible interventions to help your child succeed to his/her fullest.” - North Carolina, US
“Keep to a regular routine and any progress is progress. Please get a team of doctors you can trust and that listen to you as a parent should be heard for their child.” - Kansas, US
“Follow your instinct and remember you’re their voice, so speak up!” - Pennsylvania, US
“Don’t compare you kid to those meeting typical milestones or even other cask kids.” - Utah, US
“Do not lose hope!” - Brazil
“Aim high.” - Scotland
“While there is a lot to wrap yourself head around now, and this journey with your child might be a little bumpy at times, you love them unconditionally! And people around you that care for you, experts, etc. will be there to support you on this journey! You’ve got this!” - Washington, US
“Your child you know and love hasn't changed. As impossible as the moment seems, you'll get through it.” - Ohio, US
“Keep believing in the small steps you can take in your child's development. Don't focus on what your child can't do, but see what it can do and build on that.” - Belgium
“Take your time, know that no one can love that baby more than you, and do what you can to get the best possible care within your limits and means.” - New York, US
“Don't be sad. Our child is our best baby. And never give up. Give them the best help.” - China
“Seek rehabilitation training.” - China
“Early intervention and therapy therapy therapy!” - Illinois, US
“Not stop working and trying. Music, water and funny sounds are loved.” - Italy
“Enjoy the ABILITIES, don't just focus on the DISABILITIES.” - South Carolina, US
“Please accept him or her.” - China
“One day at at time.” - Minnesota, US
“All of our kids are so different and while it’s nice to have something to compare them to, don’t forget they all develop and meet milestones differently. Comparison of your child to others is the worst thing you can do to yourself.” - Arkansas, US
“Don't be afraid to find help and research about the condition before it could be late to help your child.. Reasearch, ask, find information to help your son, daughter niece or nephew” - Paraguay
“Things will be ok- one day at a time. It will get easier” - California, US
“Have patience, they do things at their own pace. - Montana, US
“You are not alone. Reach out to the community. I wish I had known about intensive therapy earlier in our journey. It has been amazingly beneficial.” - Colorado, US
“Be strong, our Kids are happy.” - Germany
“Don’t let anyone tell you that your kid isn’t able to learn” - Holland
“Try not to feel alone. I was upset and shocked. Genetics did not help at all. I came home and found the groups on the internet - so nice to talk to others and get advice. And fight for every thing you can help your children.” - England
“Diagnosis is not destiny and they are fighters. They must do daily therapies to help the evolution” - Portugal
“Take a lot of Therapies like Physio.” - Germany
“Parenting a child with additional needs can be exhausting and overwhelming. However, you have strength and compassion that you are not yet aware of. Cherish the gifts that your child possesses instead of focusing on their challenges. Yes our precious girl turned our world upside down! But what a journey!” - Ireland
“Go with your gut.” - Wales
“Provide Love.” - Lebanon
“Just take it one day at a time. Take your child to their doctor's appointments, Physical Therapy, occupational and speech. You can also look in your community for the early on program that takes children with disabilities from the ages of three to five and they will help out tremendously, then you can give all the information that they gather at the early on program and give to your child doctor to see how they've improved. My daughter loved it!” - Michigan, US
“Each child is unique.” - Romania
“Take one day at a time and enjoy the blessing” - Virginia, US
“Find an advocate to help you navigate equipment program and support.” - Massachusetts, US
“Each of our children are united, yet unique. Don't google it. Find other families and discover their stories of hope. Don't listen to any medical prognosis, the scale is vast and no one knows what your child will be capable of.” - England
“You aren’t alone and they are a blessing.” - New York, US
“Get ready to fight! The road is not easy but hope is not gone. These kids are fighters and continue to break medical records daily. Stay calm! There is help!” - Pennsylvania, US
“The sky is the limit!” - Minnesota, US
“Enjoy the blessings...there are many! Have faith and enjoy life.” - Iowa, US
“It is important to not focus too much on the diagnosis and predictions from doctors. Instead try to enjoy your child like you would have enjoyed raising a healthy child without constantly analyzing every single achievement, behaviour etc.