Raising Complex Kids With No Clear Diagnosis

kids with no clear diagnosis

The first ten years of my life as a parent really sucked. No, they didn’t really suck. It’s more like, they sucked up every ounce of energy I had and then wanted more. Raising complex kids with no clear diagnosis, I felt lost and adrift.

My journey started out complicated, and that course has never changed. I have been destined to raise at first one non-traditional child, followed by two more kids who learn differently. For our family, atypical neurology is what I call “the new normal.”

Parenting a kid with unidentified, complicated issues is like walking onto a tightrope, watching as your safety net is removed, and continuing on without a net, uncertain that there will be a safe landing on the other side.

You’re out there on the wire. It’s not like you really have a choice. But you’re committed. It’s terrifying. You’re sure the crowd is watching. And you feel simultaneously responsible and irresponsible. You have lost your confidence because for some reason that net really made a difference. And you are all alone. Except for the child on your shoulders.

The only safety net for your child is you.

Pin-balling from Specialist to Specialist

Desperately seeking definitive answers, specialist after specialist offering diagnoses that didn’t tell a whole story, the years of not knowing – of having no clear diagnosis or explanations for my complex kid – took their toll. My guilty little secret? The first ten years of parenthood were the most painfully difficult years of my life (something I’ve never let myself say to anyone for fear of somehow offending my children).

Don’t get me wrong. I passionately loved my kids, whom I wanted more than anything in the world. I had the privilege to stay at home, and I put every ounce of myself into dutifully doing everything possible to give my kids the best life I could offer.

I was a happy, grateful, stay-at-home mom.

And I felt miserably in over my head, lost and alone in a world that no other parent I knew seemed to be experiencing. Did I mention those early years were really tough? With a laundry list of suspected issues and no clear diagnosis to help me ground myself, I struggled to find a clear path to treatment.

When my newborn began to scream at two weeks old, it set the stage for the next decade. As their peers went to ballet and karate, they went to vision and occupational therapy. As their peers established authentic friendships and experimented with spend-the-nights, they changed schools, and then they changed again.

Longingly, I saw parents of kids with food allergies, ADHD, autism, and other challenging issues receive clear diagnoses and find common ground with each other. They discovered what they were dealing with, connected, shared, learned and helped each other move out of denial and into acceptance.

I watched from a distance, isolated by the most unsettling part of all – the not knowing.

Article continues below...

Want to Go from Chaos to Calm?

Download a free tipsheet, "10 Tips for Calm & Confident Parenting." Use the coach-approach to change the tone in your home or classroom -- starting now!

Ending A Decade of Isolation

Many parents of complex kids often experience years of not-knowing – of inconclusive or suspected, but no clear diagnoses – filled with anxiety, confusion, and few companions on the journey. It is a scary, lonely place to linger.

For me, the prospect of a clear diagnosis offered hope, clarity, and an end to the isolation. Without it, I felt adrift, directionless in a vast sea.

In retrospect, I must have thought I needed a definitive diagnosis to find common ground with other parents. I let my fear that I didn’t know ‘the’ answer prevent me from joining any group to get the support I really needed. I was isolating myself because of what we didn’t know, instead of connecting to what we did know.

Now, don’t get me wrong. I’m not blaming myself for this. I really thought diagnosis was my golden ticket for admission. I didn’t realize that the access point to end the deepest part of my loneliness was not in diagnosis. It was in sharing my experience with others, even with no clear diagnosis.

So whether you’re clear on your child’s challenges or you’re still trying to figure it out, here’s what can help you shorten your learning curve and end the isolation:

  1. Seek Connection: Even if you’re lucky and you have a friend, a parent, or a sister who will listen, there is something powerful about connecting with others who share your experience. Without a clear diagnosis, those other parents can be difficult to find. But they’re out there! Don’t stop seeking. Reach out to other parents who understand even part of your experience. Get on social media groups and blog sites. Other parents are your lifeline.
  2. Find your Group: You have enough information to seek support, even without a clear diagnosis. You owe it to yourself. For almost every ailment or challenge, there is a group, or a movement, or some collaborative effort for support. And if there are many things going on with a complex kiddo, in our groups, you’ll find a community of parents who are really open and accepting of anyone who wants to be involved. Connection is powerful. Success is a team sport.
  3. Step Outside the Lines: While diagnosis opens the door to community for both parents and kids, it is not the only entrance. If you don’t have a definitive diagnosis, then focus on a challenge area (like executive function) or find a general group (like ImpactParents). For example, we created ImpactADHD® (now ImpactParents) to train and coach parents of kids with ADHD. But it also clearly provided great support to parents of all kids who are challenged with similar symptoms like inattention, impulsivity, and executive dysfunction. Don’t wait for a perfect fit – make it work!

For me, after more than a ¼ century on this journey, I no longer feel alone on the ride. But to be clear – I am still very much ON the ride. My kids are now young adults, and they continue to manage their various complexities. And I’m grateful for the clarity that I DO have. I appreciate my connections with many different communities. And we continue to chart new paths every day.

So, yeah, the first ten years of parenthood with no clear diagnosis sucked for me. But that doesn’t have to be your first ten years – or five years – or one. I think back to how hard it was without other parents who understood my world, and I cannot fathom how I made it so long. Other parents offer support and strength, validation, and encouragement. They can help you enjoy the ride. Yes, ENJOYing the ride is possible!

And guess what? While the journey of having kids with no real diagnosis is not exactly what you expected it to be – ok, it’s not at ALL what you expected – it’s still a pretty exciting adventure. And it’s your adventure. It helps a lot when you find others who can ride with you through the laughter and the tears – even if there’s not a clear diagnosis for guidance.

P.S. If you feel like you have a 'very' complex kid, please read my article in Attention Magazine here.

More From Complex Kids Blog