Action Steps
Getting a CASK Gene disorder diagnosis may feel like the end of a tumultuous and confusing journey. But in many ways, it is also a commencement. We are happy to be here with you as you start your next adventure, and we look forward to learning from your own successes!
If you’re not sure where to start, here are some basic suggestions for action steps to get you started:
Making Connections
Now
Take a moment to sit with your feelings. Know that no matter what you feel - it’s a valid experience
Share the diagnosis with a close friend or family member. Consider asking them to accompany you to appointments if you feel overwhelmed.
Surround yourself with positive, support people, and consider joining our online communities.
Explore the CASK Gene Foundation website for information, and make sure to join the contact registry!
After it Sinks In
Talk openly with your family and support system as you learn more and experience all the related feelings.
Consider getting together in person with a family in our CASK community who may be within driving distance. Let us know if you need help finding someone!
Create an at-a-glance guide about your CASK Gene Warrior, to more easily educate others around you
Make a list of things others can do to help you and your family - those that want to support you, may not know how to help, even if they are eager to do so.
When You’re Ready for More
Try to find recreational activities in your community that are well suited to your family’s needs
Find a local foundation that provides fun experiences or helpful services for special needs families.
Find options for respite. Family and friends may feel this is a great way to help support you!
Give yourself space to grow and change. Your feelings and concerns may change over time.
Medical and Record-Keeping
Now
Get a binder, expanding file, or online system that works for you - to organize the many medical reports and results that will be of interest to anyone trying best to understand and treat your CASK warrior
Ask questions in our online communities and get advice from other parents. Learn about the varieties of specialists your child may need to see.
Find out if there are doctors near you that have already treated another CASK warrior
After it Sinks In
Schedule appointments for evaluations and initial studies (i,e, neurological exam and EEG, PT, OT, orthotics, swallow study, EKG, echocardiogram, etc.)
Come up with a good system for organizing your calendar, so you and your family can keep track of all the appointments
Document your child’s growth and development - carefully note any changes for the better or worse, and keep track of the dates for these changes.
Take lots of photos and videos to document any unusual behaviors for your doctors.
When You’re Ready for More
Use the information you have learned from the baseline appointments to create a plan for ongoing treatment.
If any of the doctors you have met with do not feel like a good fit for your family or your medical team, do not be afraid to contact a patient advocate and request a change.
Make sure to stay on top of scheduling follow ups as recommended.
Therapies and Interventions
Now
Compare your child’s current therapies and services with those of other CASK warriors. Note any gaps you might need to fill.
Prioritize your concerns - decide which symptoms are most intrusive for your child, and which problems scare you the most, so that these can be addressed first.
Start getting referrals and schedule consultations
After it Sinks in
Schedule a team meeting to discuss progress so far, and compare notes about what has been learned so far.
Speak up about things that seem to bring about positive results with CASK warriors in other areas
When You’re Ready for More
Document progress and strategies that are successful
Communicate back to other CASK families as you learn what has and has not worked for your CASK warrior.
Community, School, and Services
Now
In under the age of three - seek out early intervention services.
If over three - communicate with the school system, to learn about options available and processes needed to get services started.
After it Sinks In
Provide your school system with your warrior’s at-a-glance guide - to help them better meet their needs with more successful strategies.
Establish a routine of open communication, so they can be aware of any changes,
When You’re Ready for More
Keep your own record of noted progress and be an active advocate in team decision-making.
Awareness and Advocacy
Now
Refer family, friends, and medical providers to the CASK Gene Foundation website, to help them understand the diagnosis.
After it Sinks In
Consider sharing your CASK warrior’s story, so that others can learn from your experiences and successes.
When You’re Ready for More
Plan or participate in a fundraiser for the CASK Gene Foundation so we can continue to make a positive impact in the lives of CASK Gene warriors everywhere!