There is no right way to handle your child’s unexpected diagnosis

Guest post by Kelly Priest

By: Alexander Lyubavin - CC BY 2.0
By: Alexander LyubavinCC BY 2.0
It’s OK to come unraveled a little bit.

My friend Annie told me so when she was tucking me into bed, while my husband was calling my therapist to see if she would make a house call, or if he should sign me directly into the psych floor at UCLA Hospital. OK or not, I was coming a little bit unraveled.

Maybe coming unraveled isn’t for you. You don’t have to. I waited several months myself. But as parents, many of us find our usual coping resources outstripped by a child’s diagnosis.

It’s OK. Anyone who suggests otherwise could be so busy pressuring themselves to hold it together, they simply can’t spare the energy to imagine what other options exist for themselves, much less for you.

But in parenting a kid with a diagnosis you hadn’t exactly longed for, coming unraveled can be a bumpy part of the road you’re on. Sometimes, just like our kids, we go through a developmental phase of chaos and disintegration before we consolidate new skills. I didn’t enjoy it, but I don’t think I could have skipped that step. It was an important part of my developmental trajectory.

Working with families of children with developmentally related diagnoses, I’ve seen all kinds of responses: numbness, blinding denial, scathing and misdirected anger, seething resentment, and gung-ho bargaining (“If we just do every possible therapy, it will go away, right?”). At some point, most parents find a way to make peace with the diagnosis, even learn to appreciate it. But as we make our ungainly way through the stages of grief, we can look more than a little “off.”

I found some excellent support, and learned that if I took good care of myself first, I would find it in me to take care of others the way I wanted — without having a panic attack. Sure, it sounds obvious now, but learning that was hard work. You don’t have to go to therapy, though. If it doesn’t hurt anybody, do whatever works for you: go to church, read poetry, sing in your car very loudly, volunteer, take a vacation, ski, meditate, drive to Alaska and back, get sober, work out to Metallica, start a support group, or even better, a legislative advocacy group. Blog. (Ha.)

Just don’t get too stuck. That won’t work. Your child is more entitled to access to your “good enough” self — that part deep inside you who can advocate intelligently, teach effectively, and love (more or less) unconditionally — than you are entitled to thrash around in the shallow water of your grief.

You also don’t have much time, so go ahead and feel your feelings. Let other people feel theirs. Stumble, claw or drag yourself to some resource that cares for you and makes you feel whole and well and inspires you to action. Then take a deep breath and jump in the deep end: you can do it.

Comments on There is no right way to handle your child’s unexpected diagnosis

  1. wow, thank you OBM. No less then 5 minutes ago I was reading my toddlers latest developmental evaluation and was starting to feel the beginnings of a panic attack set in as I was reading. No matter how many times I read ‘significant developmental delay’ it still sets me into a tall spin. Right after I finished reading the eval. I decided to click over to OBM to see if any new cute pictures had been posted to help distract me. This post is a great reminder to alow myself to feel my emotions because my normal MO is to research, research, research, panic attack, months of hyper anxiety.

    Ok, now off to look at that Bert and Ernie picture in the previous post.

  2. Learning that my daughter had terminal cancer was the worst day of my life, until the day she passed away. Although I may seem to hold it together I do plenty of freaking out. I have learned the best way to deal with my situation is to feel every emotion as fully as I can as soon as I feel it.

  3. The viewpoint we always used to try to share with parents in the special Ed school I worked in was that the written diagnosis of special needs on the piece of paper in front of them isn’t going to change the child that they know, but it is going to be a key to open the door to getting the help and support that they need.
    Hopefully this view may be a different angle to look at diagnosis and educational statementing from?

    • Hm, I thought about this for a few days. I heard the same thing when my son was diagnosed. It’s not wrong to point out that this is the same child as he or she was before the diagnosis. That might help soften the blow, help some people to feel like it’s not such a monumental change.

      But it is.

      For the parents, the diagnosis is often incontrovertible evidence that the landscape has changed. The life they assumed they would live is no longer in front of them. And at that point they don’t have any way of knowing about the richness and beauty of the different life yet to come; only the pain and burden and worry are in sharp focus. The relationship they more or less thought they would have with their child is not going to happen. It’s going to happen in a different way than they thought, and it it scary at first to be stripped of your assumptions with so little to guide you on the unfamiliar road ahead.

    • The bad news is that the day you get a developmental evaluation back with significant areas of concern … that’s a day that’s gonna leave a mark. The good news is that it gets better from here. Good for you, for getting started. There is a world of great help out there that can make a big difference.

  4. I’ve done my fair share of freaking out and losing my shiz. Most days are fine – other days all of the everything, the diagnosis, knowing its for life, well intentioned but ignorant comments, all the appointments, insurance hassles, etc. just add up and become too much. This past Friday was a day I let myself feel sad, mad, frustrated, let down and had a pity party. but Saturday I made myself pull together for my boy and carried on. It is okay to become unraveled sometimes. I once read a fabulous article about treating the whole child, not just the condition. It was aimed at medical personnel but rang true for me as well.

  5. Yup. “That day” totally sucks, and even coming from a relative stranger in internet-land, I think a lot of people need to hear that totally losing it is okay – possibly even necessary. No one in my medical world validated the need for a meltdown, and friends and family just wanted to make me feel better, so I never felt like I could let it happen.

    After a nasty pre-natal diagnosis, I felt like I had to keep my business totally together (for my family, for my husband, so I could still go to work the next day, so I could continue to see myself as “strong,” or whatever other reasons I fed myself), but I really didn’t. I needed to lose it for a while, and denying myself that opportunity made a lot of things harder in the long run.

    • Well put. For all the reasons you described, it can be hard to carve out space to feel our real feelings.

      Of course the world responds better to a brave little camper who manages it all really well. But as I meet many parents at their wobbliest moments, I do well to remember that all great changes are preceded by chaos.

  6. For me, there have been periodic stages of grief. Looking back, the stages of grief are very clear, denial, anger, bargaining, acceptance (kind of.) My daughter will be two in June and I am relieved to say the break downs have lessened over time.

    My husband and I seem to freak out at different times which is pretty helpful; at least one of us is keeping it together at any given time. We are very careful who we share our feelings with. During a recent conversation with my husband’s mom, she expressed that she is sad too. This was a huge eye opener for me. For so long, I hadn’t thought about how the diagnosis has impacted the extended family. I think I am finally ready to discuss it.

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