When people picture raising a child with a disability, they usually picture the practical side: the specialised medical care, the therapies, the special education, the long-term planning. All real, all demanding. But underneath all of it is something quieter, how you, personally and specifically, are supposed to hold up as the parent doing the caring. Tackling any one of those practical pieces is already more than most parents of neurotypical children ever have to think about. Nobody warns you what the emotional side costs.
Then one day it hits you anyway. A crippling isolation and loneliness that comes with the role, that maybe no one ever mentioned to you. You can read every book and gather every piece of knowledge available, but if you don’t have human connection and a community where you feel seen, the struggle can feel insurmountable regardless.
Where This Comes From
A Different Story is a charity based in Amsterdam, founded through my own experience of having a little boy with a rare neurological disease and navigating life in a new country after his diagnosis. If I look back and name the one thing I wish had been available to me early in that journey, it’s community, without a doubt. I didn’t have it. I’m determined to make sure others do.
A Growing Parent Support Group
At the core of our work is a Parent Support Group that meets once a month, in person, with free childcare, and online. It’s grown into a beautiful group of diverse parents and carers who come together to share, to cry, to laugh, to connect, and to accept what is.
The children’s conditions range from rare diseases to severe autism to conditions that are unknown or undiagnosed. Regardless of the diagnosis, it’s the shared experience of being a parent to someone with intensive, long-term care needs that bonds this group together. Don’t underestimate what being part of a community can do for your life as a parent to an extraordinary child. You are not alone.
Why Community Specifically Helps
There’s a particular kind of tired that comes from constantly translating your experience for people who haven’t lived anything close to it, explaining, again, why a “simple” outing takes an hour of preparation, or why a good day looks different for your family than it does for most. In a room of people who already understand that without explanation, you get to put that translation work down for a while. That alone changes how heavy the rest of it feels.
It also means practical knowledge moves faster, which therapists actually have availability, which schools are genuinely inclusive rather than just saying so, what’s worked for someone else’s child that might be worth trying for yours. None of that replaces professional guidance, but it fills the gaps between appointments, which is most of your actual life.
What the Group Actually Looks Like
There’s no script to a session, and that’s deliberate. Some months the conversation is practical, someone’s found a therapist worth knowing about, someone else needs to vent about a school meeting that went badly. Other months it’s quieter, just people sitting with each other in a way that doesn’t need fixing. The free childcare at the in-person sessions matters more than it might sound like it should, for a lot of parents in this position, it’s the only hour in the month where they’re not the one doing the caring.
The online option exists for exactly the reasons you’d expect: a bad night, a flare-up, a childcare gap, or simply not having the energy to leave the house that day. Nobody has to choose between showing up and looking after their child to do it.
Finding Your Own Version of This
If you’re newly navigating a diagnosis, or you’ve been at this for years but still feel like you’re doing it alone, it’s worth actively looking for a group rather than waiting for one to find you. Ask your child’s specialists what exists locally, search for condition-specific parent groups, or start with something broader like ours and see who you meet along the way. The right group won’t fix the hard days, but it will make sure you’re not carrying them by yourself.
For more information about our work and to join one of our upcoming support meetings, visit adifferentstory.nl/what-we-do/parent-support-group.
Amsterdam Kids also has a related piece on emotional support for women navigating fertility and motherhood, which touches on a different stage of parenting but the same underlying need for community. Our guides section and newsletter are also worth a look if you’re building out your support network as a family in the Netherlands more broadly.
A Few Things Parents Often Ask
Do I need a formal diagnosis to join?
No. Some of the children in our group have a clear diagnosis, others have conditions that are still unknown or undiagnosed. What matters is the shared experience of caring for a child with intensive, long-term needs, not where you are in the paperwork.
What if I’m not based in Amsterdam?
The online sessions make the group accessible wherever you are in the Netherlands. Come along to an in-person one when you can, and use the online option the rest of the time.
What if I’m not ready to talk yet?
That’s fine too. Plenty of parents come and listen for a few sessions before they say much of anything. There’s no expectation to perform openness before you’re ready for it.
By Sarah LaPham, Director and Founder of A Different Story.
