Your stories

Being introduced to DSM opened the door to a whole community of families who understood our journey. I remember feeling welcomed, understood and reassured. It gave me hope and helped me realise that Avery’s life could be full of happiness, opportunities, friendships and amazing experiences.

Since then, we have been lucky enough to attend lots of DSM events. Every event has given us opportunities to meet other families, make memories and allow Avery to grow up surrounded by people who understand and celebrate him for exactly who he is. DSM has made us feel included rather than different. It has given us friendships, experiences, support, and a real sense of belonging.

For me, what makes DSM special is the community. DSM doesn’t just see Down’s syndrome, they see the individual child and the whole family. They create spaces where our children can be themselves, where parents can talk openly without having to explain everything, and where differences are celebrated rather than looked at as something negative.

I have also had the opportunity to give something back by holding my own fundraising event for DSM, which raised over £2,000. Being able to support a charity that had already given our family so much was incredibly special to me.

Looking ahead, I would love to see DSM continue to grow and reach even more families. Most of all, I hope DSM continues to be the welcoming, supportive community it has been for us, so that every family who joins can experience that same feeling of you’re not alone – you’re part of us.

They were welcoming and informative, helping us navigate those first months and years of what to ask for and how to ask for it. They helped unlock many of the mysteries, rules, processes and regulations that suddenly become part of life when you have a disabled child.

When we arrived back in the UK, we were invited to a coffee morning with other parents. We also met up with another set of parents and their baby girl with Down’s syndrome at a café in Chorlton. We didn’t know it then, but many of those people and their children have gone on to become incredibly good friends to us, to our children and to Theo.

We have been around DSM for a long time now, and we have enjoyed a huge range of activities and events. There has been practical training and resources for us as parents, mixed social gatherings, events for Theo, and the brilliant, endless WhatsApp groups where you can ask any question and someone will offer advice, thoughts or their own experience.

That sense of connection has been very different from the confusing and often isolating world of having a child with a disability and managing the legal and medical issues that can come with it. For me, DSM is about connection, kindness, generosity, joy and celebration – words I don’t often experience within the statutory sector.

If DSM didn’t exist, I think we would feel gutted and much more alone. Even now, after being members for a long time, I still feel like we are learning, still grateful, and still sometimes overwhelmed by whatever the next stage brings. But I am grateful that there are people within DSM who continue to share their wisdom and experience.

Looking ahead, I think DSM is doing an amazing job. The organisation continues to grow while staying rooted in its original values. If I had a wish list, I would love to see holiday clubs for teenagers. But most of all, I hope DSM continues to be the place it has been for us: a community that offers advice, friendship, celebration and reassurance through every stage.

We joined after going along to the preschool group, where we met such a caring and lovely group of mums and volunteers. From the beginning, we were made to feel welcome and that we belonged. People were keen to share advice, answer questions, offer their own experiences or simply have a laugh with us, without ever making us feel overwhelmed.

DSM has been a real support to our family. They helped us through Stanley’s DLA application and gave us advice when we were trying to address support from the local authority.

Having people we could call on made such a difference, especially when those processes felt difficult to navigate on our own.

What feels special about DSM is that, even though the charity supports so many people, it still feels personal. Because it is relatively small, you get to know people and it means a lot when they know you by name.

I also love that DSM supports people of all ages and abilities, and I look forward to Stanley growing up with the charity.

Without DSM, we would lose a crucial lifeline for Stanley and for our family. Being part of the charity has left us feeling welcomed, supported and like we belong, and I hope DSM continues to evolve while keeping its grassroots heritage at its heart.

I was signposted to the charity in late 2020 during Covid through Rodney House, but it wasn’t until 2022 that we actually started attending as we were still unsure about Covid measures and also with having a newborn (Xander’s sister, Zenaida) we were still taking lots of extra precautions. Initially I had looked up the support group online to see what it was all about, and found the group on Facebook. So I asked about when the group sessions were, and went from there.

When we attended our first session, everyone was really accepting of us and really friendly. Nobody judged us for letting Xander literally run around the outer corridors for the whole time we were there. We wanted to take things at his pace, and do things he wanted, so that’s exactly what we did, chasing behind him the whole time.

Being part of the community has been such a positive experience. We’ve made use of the specialist speech and language therapy sessions. The therapists have been amazing with Xander. We make use of the sensory play room when Xander needs a quieter space, and now that he’s used to the space, he loves the soft play area too, as long as it’s not too busy with the older children when he first enters the room.

Sometimes just knowing how to ask for help or even knowing what help you need can be a barrier as it’s not always easy to know the right way to ask for help, but with the diverse community of members, and the lived experience of the staff team, there’s always someone to talk to and approach.

If I were to sum up how I feel when I think about Down’s Syndrome Manchester … I feel welcome, supported, and seen.

For the future of the charity, I’d like to see more of the same. There’s still so much to explore within the group, as Xander is still quite young, so we look forward to using more of the sessions available through the age groups as and when they are appropriate for Xander.

We regularly attend the Chatterbox events every month. We have learnt so much from conversations with parents and specialists regarding physical and learning development, guidance and techniques from trained speech therapists and formed lasting friendships with those experiencing the same.

We have attended training courses, raised money (with family and friends) for the charity through the Manchester 10K and worked alongside them through a work sabbatical initiative intended ‘to give a little back’ to society.

What’s so special about the charity is the sense of community that has been created, promoted and which it continues to provide.

We’d feel lost without Down’s Syndrome Manchester, in all honesty, like we are really on our own. Parenthood is a tricky enough journey, but without this specialist support network, our son, and our family would not be thriving as much as we are!

I feel proud, passionate and grateful to be a member.

For the future of the charity, I’d like to see this ever growing, strong Manchester community be recognised for the unique support they provide, that enables those with Down’s syndrome to thrive, lead an independent life and be respected as part of the community. I would also love to see the support continue for the families, carers, education providers as this network and community is vital.