We know this can all feel like a lot — the appointments, the forms, the worry, the trying to be “fine” for everyone else. You are not the only one with questions.This page is here to make things a little easier. Who we’re for. How to join. What support looks like. What to expect when you come to a session. How to ask for help.
If you’re still not sure, you can always just message us and say, “Hi, I don’t know where to start.” That’s enough. We’ll meet you there.
1. Who we are /Is this for me?
It is never too early to contact us. You might not feel ready to meet other families on this path, and that is OK. You might just want to chat about your worries on the phone and be heard. We will always listen and if that is as far as you want to connect right now there is no pressure to do anything more.
Start Small CIC is a parent-led community for families of babies and young children (0–5) with complex needs. We offer connection, practical support, advocacy and safe spaces to just be with other families who get it.
For parent carers of children with an uncertain future. For parent carers of children who have had difficult starts, have complex needs, medical needs, or life-limiting conditions, mainly ages 0–5.
If you’re in those early years, and you’re feeling overwhelmed, isolated, or lost in the system, you’re in the right place.
No. Many of us didn’t have a full diagnosis for a long time (or still don’t). If you’re dealing with hospital appointments, feeding plans, physio, referrals, “watch and wait,” suspected genetic conditions, developmental delay, etc — you’re welcome.
Yes. Siblings are part of the family too. We’re trying to create spaces where the whole family can be together, creating inclusive spaces for the whole family.
Yes , we will choose venues as accessible as possible and understand how hard it can be to leave the house when you are dealing with things such as…..feeding tubes, oxygen, or large buggies. If you need extra help to attend, please just ask.
No. We’re not doctors or crisis responders. We are volunteer parents with lived experience (and professional backgrounds in counselling and psychology) creating connection, emotional support, and practical guidance.
2. Coming to a session
Joining our community is free and wherever possible our activites are free or low cost. We have worked hard to partner with local businesses and organisations to offer families free outings. If there is a charge for an acitivity we will always let you know before.
It’s a swap/share network for specialist toys, adaptive clothing, sensory kit, supportive seating, feeding bits, mobility aids — all the expensive stuff our kids grow out of fast.
If you need something, ask. If you have something to pass on, offer it. It’s that simple.
Send us a message with what you’ve got (a quick photo helps). We’ll try to match it to a family who needs it. We don’t resell donated items.
We take safeguarding seriously. There are always at least two adults overseeing groups. We’re trained in things like first aid, risk awareness, group dynamics, and holding difficult feelings safely.
That said, you are always responsible for your own child’s medical needs during sessions.
Yes — we actively try to create spaces where siblings are welcome so you’re not constantly splitting your family between “the one who needs care” and “the one who has to wait.”
Send us a message through the Join Us page and we’ll add you. We keep groups closed and moderated so they feel safe.
Yes. Health visitors, physios, neonatal teams, SEND workers, community nurses, paeds, etc. — you can point families to us. Please just be mindful we’re parent-led, volunteer-run, and replies may take time.
Yes of course. Our face to face meet ups are all in Sussex because that is where we live BUT you can join our online community – we are stronger together.
3. Getting support
We can help you figure out EHCPs, DLA applications, equipment referrals, grants, appointment letters, and who to talk to next. We can help you make sense of navigating health and education systems, as well as guiding you towards approproiate early intervention sessions for your child, and understanding medical letters. If we can’t help you ourselves we will connect you with someone who can.
Usually we can’t attend appointments with you — we’re parent volunteers and also caring for our own children — but we can help you prepare questions, understand what’s being said, and think about what you’re entitled to ask for.
Please believe this: it is hard to ask for help, but you don’t need to do it all alone.
Please always reach out no matter how big or small the question – remember we are parent carers too so may not get back to you immediately – but that is where the WhatsApp and Facebook network can be great for asking our community for help and advice.
4. Practical stuff (cost, safety, access)
A mixture of facilitated therapeutic events where we help you process your journey so far, to an informal stay and play session.
No. You can show up, sit quietly with a tea, and leave early if you need to. We know some days are survival mode days.
Sometimes yes, sometimes no. We’ll always say clearly in the WhatsApp / Facebook group if something needs booking or has limited spaces. If you’re not sure, just message us and ask.
Yes. All of that is normal here. You don’t have to apologise for your child’s needs, sounds, or equipment. We build the space around our children, not the other way round.
Yes. You are absolutely allowed to be however you are that day — anxious, numb, angry, hopeful, grieving, proud, exhausted. We’ve felt all of those.
Yes, if you tell us in advance. Send us a message and we’ll arrange for one of us (or another parent) to say hi and get you settled.
Tagline
One more thing…
Some days it will all feel too much.
If all you can manage is sending us one message that says, “Hi, I don’t know what I need,” that’s enough.
You don’t have to have the right words. We’ll meet you where you are.
Sign up now and keep yourself informed!
Error: Contact form not found.