When we think about what it might take to raise and care for a child living with a disability (physical and/or cognitive) we often think mainly about the physical and time-consuming act of parenting. We think about the specific needs around their condition, specialised medical care, different therapies, special education, long-term care, etc. Yet most of all and through all that, we think about how we can give the best life possible to the tiny and complex human we’ve been tasked to care for in this life. And let me just say tackling any one of those things is more than most parents with ‘normal’ and /or neurotypical children ever have to think about.
However, what we don’t often think or talk about is what YOU, personally and very specifically need as a parent caring for a child with a disability. Then one day it completely and unexpectantly slaps you in the face. The crippling isolation and loneliness that is often felt in this role and that maybe no one ever mentioned. You can read all the books and have all the knowledge that is available to support you, but if you lack human connections and a community where you feel seen, then your struggle might feel insurmountable.
A Different Story is a charity, based in Amsterdam, that was founded through my experience in having a little boy with a rare neurological disease and navigating life in a new country post diagnosis. If I could look back and name one thing that I wish was available to me early on in my journey with my son, I’d say with a doubt: ‘community’. I didn’t have this, but I’m determined to make it available to others. Therefore, at the core of our work is a growing Parent Support Group that meets in-person (and with free childcare!) and online once a month. It’s grown to be beautiful group of diverse parents and carers who come together to share, to cry, to laugh, to connect and to accept what is. The condition of the children ranges from having a rare disease to severe autism to conditions that are unknown or undiagnosed. Regardless of the condition, it’s the shared experience of being a parent to someone with intensive and long-term care needs that bonds these people together. Do not underestimate the power that being part of a community can have on your life as a parent to an extraordinary child. YOU are not alone!
For more information about our work and to join one of our upcoming support meetings go to our website: https://adifferentstory.nl/what-we-do/parent-support-group/
By, Sarah LaPham – Director and Founder of A Different Story
