I Just Found Out Something Is Wrong with My Child, Now What? 2

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.

Tips based on my Mom experience (I am not a medical expert):

1. 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.

2. 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.

3. 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.

4. 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).

5. 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?

6. Explore what your city or county’s public school system and local government can provide. Depending on the diagnosis, your state, and your local public schools, even if your child is too young for school, you may qualify for help from your school system or an agency, such as the GGRC in California or the Help Me Grow program through Ohio’s Department of Health.

7. Enlist your child’s school or caregiver as a key ally and team member. If your child attends preschool or elementary school, work with the school to ask for any support your child needs, and get continuous feedback about how your child is doing. Find out if your child qualifies for a legal document called an IEP (Individualized Education Program) or Section 504 Plan that entitles your child to specific services and sets goals for your child’s progress.

8. Coach anyone who spends significant time with your child about anything they should know such as medical support,  what to expect, or ways they can help reinforce therapies or approaches you are using. This could be as simple as making sure they know which inhalers to use if your child’s asthma flares up; medications, diet needs, and warning signs for diabetes; or most effective communication approaches and game play that support the therapy you’ve chosen for your child with autism.

9. Be prepared that some family members and friends may have a hard time accepting the diagnosis because it is so difficult that this perfect child they love so much may not be the exact picture they had. As hard as it might be, give them time and continue discussing the situation. For now, appreciate and spend more time with those who can best be part of your support team so you have the help you need.

10. Accept that some people will not know the right thing to say. Perhaps from a need to say something, they may say something inappropriate or insensitive. I know, better to say nothing at all then something like, “you will have other children” or for them to share the worst horror story they have heard about a child who has the same diagnosis. Look at it as an opportunity to gently educate them, and presume they are well intentioned. Or they may act like they think that after the first week, all must be fine and “back to normal” when you are just starting your journey.

11. Be sensitive to how this is effecting the rest of your family, especially your other children. Even young siblings can sense when something is wrong, especially if your attention level has suddenly changed. Try to squeeze in time to do a special activity with your other child even if it’s brief, or see if someone can provide respite care for your affected child so that you can focus on your “well” child. Or perhaps a family member can spend some quality time with them.

12. Allow yourself some time to feel sad, you are entitled…but then get into action to help your child. Most of us need and deserve at least a short pity party at the beginning. But we have to pull it together to do everything possible for our child. Perhaps this helps with the slower process of acceptance and coping. If this is a longer term situation, there will be a lot of ups and downs along the way, so figure out the best ways to have some private sad moments (even if it’s just excusing yourself to the bathroom for a longer than usual shower).

13. Try to fit in some restorative, fun things for yourself that help re-energize you. Find some time to exercise or do something fun with a supportive family member or friend.

14. Keep your spirits up and your sense of humor intact. Finding out something is wrong with your child and planning how you will cope with it and help them is a difficult journey. But know you are stronger and more resilient than you can imagine and you are in good company — there are people in your neighborhood and around the world handling challenges they never imagined. Which is why I encourage you to find some of those other people to share the journey with. Our children are also much stronger than we imagine, and we can learn so much from watching them cope. Most of all, if we can continue look for the positive and find sources of fun and humor, it will keep our spirits up.