My child just got diagnosed. What now?
Your child being diagnosed with a neuro-developmental disorder, mental health condition, or medical issue can leave you feeling stranded, alone, and lost. This is a reminder that you are not alone – see tips below for navigating your emotions, community, and new road map.
Jessica Song
“ When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy… After months of eager anticipation, the day finally arrives. You pack your bags and off you go! …But there’s been a change in the flight plan… They’ve landed in Holland and there you must stay. ”
Welcome to Holland, by Emily Pearl Kinglsey, on raising a child with a disability (full poem here)

1. See Your Emotions Differently

Receiving a diagnosis is a major, unexpected change. You may experience a LOT of big, conflicting emotions. As parents, we often feel guilty about the negative ones we’ll have – frustration, anger, grief, resentment, loneliness, heartbreak.

  • Allow every feeling. Don’t push yourself to feel positive. Some days will not be okay, and that’s okay. Making room for our emotions allows us to know what we need and use healthy coping skills.
  • Let two feelings be true at the same time. In DBT (dialectical behavioral therapy, a common therapeutic alternative to CBT), therapists believe there is healing when we find balance between opposites. You can hate that it’s not Italy AND love the tulips in Holland. You can be heartbroken AND relieved to understand your child’s struggles. After a diagnosis, you may have to work hard to find beautiful moments AND work just as hard to honor the difficult ones.
  • Make room for grief. It’s strange to grieve for a living child that is healthy. AND, grief is an inevitable part of acceptance. You may also grieve (and accept) differently than others in your family, requiring different forms and spaces of support.
“After a diagnosis, you may have to work hard to find beautiful moments AND work just as hard to honor the difficult ones.”

2. Cope and accept – with compassion

It never comes easy to say, “This isn’t what I chose, but it is the truth today.” However, with practice, it is a helpful tool. That mindset, called “radical acceptance,” is a skill that helps keep pain from turning into suffering. Coping with compassion might mean:
  • You don’t have to know or do everything right now. The number of tips, strategies, and interventions available can be overwhelming and sometimes conflicting. It’s natural to want to take action, and it is also important to take it one step at a time.
  • Avoid “Rabbit Hole” thinking – focus on the here and now. Our brains try to anticipate every possible scenario to prepare for surviving the worst. Unfortunately, that isn’t helpful. You can feel worry and grief, AND focus on the “Right Now.”
  • List the things you love about your child. The outside world might say certain behaviors are strange or inappropriate – but those quirks might be what you love about your child! Naming these positive aspects over and over again actually retrains the neurobiology of your brain to KEEP catching the positive aspects of your child – so keep “catching the good,” even when it gets hard!

“Everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.”

– Welcome to Holland, by Emily Pearl Kinglsey, on raising a child with a disability (full poem here)

3. Find meaningful  support

Our Clay parents often tell us that they feel lonely after a diagnosis – all of a sudden, the parenting advice shared in friend groups no longer seems to apply. This is why it is so crucial to have support from other parents and experts who truly understand.

  • Find a parenting group that helps you feel seen. Find a dedicated Facebook group or join a Clay groups to find families facing very similar challenges.
  • Take your time, and embrace help. Finding new doctors, new communities, and new ways of support takes a lot of time, energy, and resources. Remember that you don’t have to do it alone. Ask for referrals, join groups, and find therapists or counselors to also help YOU navigate the ups and downs.
  • Educate others on how to be supportive. This means setting guidelines on what is okay and not okay for your family. What is okay to talk about, and what is not? What is actually supportive, and what is not? For example, “It is supportive to help me find doctors. It is not helpful to tell me what I’m doing wrong.” Support guidelines teach your loved ones exactly how to help you when things get hard, AND let you set boundaries around unsupportive or hurtful behavior.

“… So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.”

– Welcome to Holland, by Emily Pearl Kinglsey, on raising a child with a disability (full poem here)

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