The Power of Community in Raising a Child with a Disability

6 November 2025

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. 

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!

Written by – Sarah LaPham, Director, A Different Story.

To access the original blog article published by Amsterdam Kids on their website: https://amsterdamkids.com/the-power-of-community-in-raising-a-child-with-a-disability/

A Different Story – the power of connection

18 September 2025

When your child needs extra care, parenthood often feels like top-level sport: intense, emotional, and sometimes lonely. Sarah Rose LaPham knows this better than anyone. She is the mother of a son with a rare condition and the director of A Different Story, a parent platform in Amsterdam. What began as a small initiative in her living room has grown into a vibrant meeting place for parents and children alike.

“It’s not the quantity that matters, but the quality of the conversations and the connection.”

A place to truly land

The idea grew out of a personal need: Sarah missed a safe space where parents could share their stories without having to explain everything over and over. “As a parent, sometimes you just want to drink a cup of tea and cry or laugh with other parents, without having to care for your child at the same time.” That’s why she arranged childcare during meetings. It turned out to be the key to success: only when parents know their children are being cared for, real conversations can happen.

The group meets monthly, in English. This makes the platform accessible to parents with international backgrounds. The core group now consists of about 10–12 parents, with roots in Chile, Israel, America, and the Netherlands, among others. For many, the meeting is “the best moment of the month.”

More than just a support group

A Different Story is not a casual coffee gathering, but a safe and vulnerable space. Parents learn to find their voice, exchange experiences, and support one another. Out of this foundation, new initiatives have emerged:

• Workshops, such as non-violent communication, specifically tailored to life with a care-intensive child.
• Group activities for children (ages 8–16) with intensive care needs. While the children dance, sing, or do art under supervision, parents get some breathing space.
• Support with healthcare and education, thanks to a client support worker who helps families navigate the social care setting and arrange care and support for their children.
• Visibility and awareness, through social media and building an online community.

Recognizing vulnerability

One important theme in the group is living loss: mourning the dreams that may never come true. Sarah explains: “You think you’ve gotten past it, but with every milestone – a birthday, a missed step – the feeling comes back.” By sharing these emotions, parents not only find recognition but also strength.

Not numbers, but impact

For Sarah, success isn’t measured by large numbers of participants. “It’s not the quantity that matters, but the quality of the conversations and the connection.” Still, the group continues to grow. New parents join regularly, often through word-of-mouth or by discovering the group online. The international character makes A Different Story unique: families from many cultures find a safe place there.

What makes A Different Story special

• Childcare as a prerequisite for real parent support.
• Professional guidance by an experienced therapist, ensuring the conversations remain safe and meaningful.
• Space for emotions: from tears to laughter, everything is welcome.
• Practical support: not just talking, but also concrete help with arranging care and navigating the Dutch system.

Making a difference together

A Different Story shows that a small group of parents can make a big difference. In a city of millions, sometimes ten parents are enough to start a movement that changes lives. Or as Sarah puts it: “You don’t have to do it alone. Together we can go further.”

To access the original article and also available in Dutch go to: https://schouders.nl/vrije-tijd/ouderplatforms/a-different-story/?fbclid=PAVERFWAM3vspleHRuA2FlbQIxMQABp2rIiqV1-kcCUQ2b_mb-is8RpWOTjjFExntL3EEsADAe5GM4Ieg3271OmgWo_aem_RiNavDl3RgqDzx5Kfwkr5g

• Dankzij nieuwe financiering kan A Different Story haar diensten uitbreiden en gezinnen extra ondersteuning bieden

  14 februari 2025

  Er zijn meer dan 1,2 miljoen mensen in Nederland die leven met een zeldzame ziekte en ten minste 75% van deze gevallen wordt gediagnosticeerd tijdens de zwangerschap of kindertijd.[1] Daarom weten we dat het traject van diagnose tot zorg bij het omgaan met een zeldzame ziekte vooral jonge gezinnen treft. Deze reis gaat vaak gepaard met een enorme extra belasting voor ouders, zowel emotioneel als praktisch, omdat ze niet alleen proberen om te gaan met de diagnose en hun nieuwe realiteit, maar ook proberen te navigeren in adequate zorg en onderwijs voor hun kinderen op de lange termijn.

  A Different Story, een stichting in Amsterdam die met deze gezinnen werkt, ziet deze kloof en heeft het haar missie gemaakt om deze te dichten. Dankzij nieuwe financiering kan deze stichting haar diensten uitbreiden en extra ondersteuning op maat bieden aan gezinnen die zorgen voor een kind met een zeldzame ziekte en/of intensieve zorgbehoefte. Ze kunnen ouders bijvoorbeeld helpen bij het aanvragen van financiële ondersteuning, zoals via het WLZ- of PGB-budget, of bij het nemen van beslissingen over geschikte opties voor speciaal onderwijs. Ze houden ook bijeenkomsten van steungroepen, die ouders helpen hun gemeenschap op te bouwen en te leren van gedeelde ervaringen.

  Sarah LaPham, de oprichtster en directeur van A Different Story benadrukt hoe belangrijk het is om deze gezinnen te steunen:

  I know first-hand the added and seemingly unnecessary struggles in navigating basic and essential services and care for my child with a rare disease in the Netherlands. As if having a baby isn’t hard enough, the system is hard to navigate with conflicting advice and a lack of holistic support. We can do better and with this funding and we will, because in comparison to other countries the Netherlands offers a lot, but the bureaucracy in accessing it is very real for families.

  A Different Story ondersteunt gezinnen die zorgen voor een kind met een zeldzame ziekte en/of intensieve zorg nodig heeft. Ze streven ernaar om de ervaring en het 'patiënttraject' van deze families te verbeteren tijdens deze vaak moeilijke en isolerende reis in het nemen van beslissingen over de gezondheid, opvoeding en langdurige zorg van hun kind in Nederland. Ze bieden praktisch advies en informatie naast mentale ondersteuning voor ouders.

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  [1] https://pubmed.ncbi.nlm.nih.gov/32395952/