It’s the little things that make a big difference …

He feels relaxed enough there to leave my side and do ‘normal’ things without making a scene, and I can get a comforting cup of tea and an adult conversation.

Rhys is three and was recently diagnosed with a rare genetic condition called Sotos Syndrome, an overgrowth syndrome characterised by common facial features, global developmental delay (including speech and language, social and emotional and motor skills), a range of medical issues including seizures, curvature of the spine, kidney problems and heart defects. These first few years have been hard, with numerous hospital visits, stays and appointments with various therapists and doctors due to kidney problems, seizures and a proneness to illness. Life with my child is completely different from what I imagined, and can be very isolating as other people often don’t understand.

My first Small Wonders visit was during a low point, never leaving the house with Rhys on my own. Small Wonders was the lifeline I needed. I was apprehensive at first, as Rhys had little understanding or communication, didn’t really play with toys, was very clingy and often had meltdowns at similar groups. Ursula, who runs the group, immediately put me at ease and I was able to explain some of his difficulties while she showed me around. She seemed unfazed, understanding and completely non-judgemental. This was invaluable as I find with a lot of places, people seem to look and judge without knowing the facts, but also don’t make an effort to find out how they can help or just be an ear to listen (without commenting). Right from the start I had someone to go to who I was able to tell about Rhys’ difficulties, who was genuinely interested in me and my family and would be a listening ear when I needed it. Sometimes I just needed a good cry and someone to listen. I knew that if anything happened, there would be someone there who understood.

Ursula has experience with children with additional needs and knew some Makaton so could communicate with Rhys too which also made it easier. She was also able to signpost me to things that could help like special needs sessions during the holidays, charities and people to talk to. I was also able to borrow toys to see if they were any good for Rhys at home without having to buy them first. Having this knowledge and resource is a lifeline for a special needs parent as you often only find out about things through word of mouth. During the tour Ursula pointed out that everyone is encouraged to talk to everyone else, making it very friendly and meaning there were no cliquey groups! Everyone (children and adults) wears a name badge to make it more personal.

Small Wonders is a lovely welcoming area with plenty of space for sit-in cars and there are plenty of toys out that Rhys can flit between at his leisure, organised into areas, not just a pile of toys, to broaden his horizons and help with the play skills that he so lacks. Every toy is in great condition, clean and in great working order which is a big plus too. Toys with buttons that don’t work infuriate Rhys so I am always on edge about him finding a toy that doesn’t work, wondering which direction he is going to hurl it and which parents are going to roll their eyes or hastily move their child out of his path!

There is a sensory room every other week, which is lovely and calming. It is in a separate, darkened room with lights, textures, and music. This is one of Rhys’ favourite areas and lets me know that the group is aware of sensory needs and will try their best to be accommodating so I can relax.

We can get a hot drink and snacks at any point in the session. I often find that children’s groups have set snack time, and at some, parents can only get a drink at this time. This does not work for us as Rhys can’t wait for snack time if he is hungry. Sometimes due to his anxiety or mood that day we only manage to stay at those groups for half an hour or so and I don’t get a drink either. At Small Wonders, though, there are volunteers who can watch your child while you get a drink or go to the toilet. For a long time Small Wonders was my only respite and a break from Rhys to have a drink was like heaven and didn’t happen anywhere else! Rhys feels so relaxed at Small Wonders and loves it there. It’s one of the only places we manage to stay for the full session! They celebrate the parents’ as well as the children’s birthdays and someone is always by the door so they can’t escape (Rhys likes to run off)! Finally one stand-out feature which makes parents and carers feel really special and valued is that every week they present flowers to someone deserving.

It’s the little things that make a big difference!