The pulse raising, thumping in your chest moment when you find out something is wrong with your child is followed by an overwhelming sense of dread and anxiety. You don’t know what to do next or how to look out for the best interests of your child.
I know because I’ve been there, more than once. Whether you are facing a short term medical crisis, life-long condition, or something in between, you need strength, support, and resilience.
The endless pit in your stomach worrying something might be wrong with your child (discussed in this related blog post), is nothing compared to the wrenching reality of finding out that indeed there is. Brief relief that your gut was right is quickly replaced by fear of the unknown and what this means for your child.
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Find out everything you can from reliable sources about your child’s diagnosis. Knowledge truly is power as it can help you manage your child’s care, ask the right questions, and think about different options. Aim for main stream medical sites, reputable nonprofits, and recognized experts dedicated to the condition. Random online searches can bring scary results and unsubstantiated treatment suggestions that could make things worse – some sadly are aimed at parting you from your money. Alternative medicine and therapies can be very helpful for some situations but not for others, so be careful to check the reliability and reputation of the source.
Write down questions and to do’s to begin mapping out your plan and the approaches you want to explore. Especially for longer term situations, start developing your child’s support team which will likely include medical practitioners, therapists, teachers or caregivers, other school personnel, key family and friends who understand your situation.
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Look for in person and online support groups with other parents wrestling with the same issues. Finding a community can be a lifesaver, and fellow parents can share pros and cons of different specialists and therapists. Hearing what approaches worked well or not can be useful, though obviously each child is different, so opinions and experiences may vary.
Vet and make first appointments with specialists and practitioners. Which medical specialists, facilities, therapists, and approaches in your region are considered the most successful for this condition? What is covered in your health insurance plan and what isn’t? Be careful to check whether new specialists are considered in network and be aware that certain procedures or types of therapy may or may not be covered, regardless of whether the provider is in network. Double check if your insurance requires special approval for any resources, and look into publicly funded resources (see 6).
Seek advice from well respected nonprofits or support groups in your region devoted to the condition your child has.While it’s wonderful that there are many organizations dedicated to building awareness or funding research, at this stage I think it’s especially helpful to find local organizations that offer pragmatic advice and support. Can you call and talk to a knowledgeable person, or go online and find a starting the journey tool kit?