I’m a mother of children with disabilities. My local support group gave me a chance to breathe

I am a mother of four and three of my children have disabilities. George, 15, has cerebral palsy, sight and hearing impairments, double incontinence and a complex brain injury sustained at birth. William, 21, has ADHD, autism and Tourette’s. Six-year-old Bertie is autistic, and five-year-old Isabelle has no additional needs. As you can imagine, finding places where we are all welcomed and where my children’s needs are understood can be a real challenge.

I came across a local disability support group called SNAAP, when my eldest son William was six. I was really struggling with his behaviour, and he was having a lot of issues at school. At the time he was undiagnosed so I couldn’t understand why he was struggling so much. We were constantly getting chucked out of places. I tried to put him into an after-school club, but he was hyperactive, he couldn’t regulate himself. We were politely asked not to come back. He was only going to school for an hour a day because they couldn’t manage his behaviour, so I had him at home all the time. We felt incredibly secluded and isolated.

Someone mentioned SNAAP did a stay and play group on a Wednesday, so I decided to go along. It was such a relief to finally walk into a place where I didn’t feel judged. Being surrounded by other parents in the same boat was just incredible. I was pregnant at the time, but I didn’t yet know the tough road that was ahead with George. When he was born, he had a horrific time and ended up with multiple disabilities.

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George is 14 now and goes go to a special needs school but he’s not really accessing an education because he struggles to regulate himself. He has a 121 or sometimes a two to one in a separate room and he doesn’t get to go on school trips. That’s why is so lovely to see him enjoying himself at SNAAP where all his needs are taken care of. SNAAP has remained an absolute lifeline for me because there aren’t a lot of activities we can do with George where he is accepted because of his care needs.

Last year he did a thing called Our Voice where he got to go on a trip and it was the first time he’d gone out somewhere without me. He went to interview someone at Kent County Council, then had pizza and came back home on the train. That was massive for George. It’s important to get him doing things now otherwise he’s never going to have the confidence.

William no longer attends SNAAP because he’s 21 and more independent now. George still goes with his PA, along with my six-year-old Bertie and my five-year-old Isabelle.

The younger two get to see their friends, and it’s lovely because there are other neurotypical siblings in the same situation – children who often miss out because they have a disabled brother or sister. My daughter currently has no additional needs, but her brothers do, so this gives her a chance to play and build friendships.

In many ways, siblings like her are young carers, so having a space where they can socialise and just be children with other children who understand what it’s like to have a disabled sibling is incredibly valuable. As a mum, I feel so much guilt for my other children sometimes for what they miss out on and how it is affecting their mental health. It’s so nice to have this little bubble around us where everyone is included. This week for instance while I was dealing with George, Isabelle and Bertie wanted to write their letters to Santa so a member of staff sat and did that with them. It was such a relief to know they were still able to enjoy that moment.

For me, the social side of things has been amazing. Some of us are so isolated we probably wouldn’t see anyone else if we didn’t have SNAAP. It is the one day of the week that I see other parents because you are so busy the rest of the time with your children. We can talk about things that you wouldn’t be able to talk about with anyone else. They also have staff who can help with things like housing or benefits. There are so many different elements – if you’re struggling financially, they have a little food bank and a clothes rail so you can take anything you need to. It’s as much for me as it is for my children.

Their winter wonderland is a safe, inclusive space – ice-skating, gingerbread decorating, sensory-friendly areas. We wouldn’t be able to go to normal winter wonderland because it’s too busy and over stimulating. The nature of George’s disability means that we quite often get somewhere and then he wants to go home because he’s not comfortable which means the other children miss out. For us going out is a big deal, we have to make sure we have the right snacks in case the food’s not inclusive, we’ve got to make sure we’ve got the radar key for the toilets, that where we are going has got changing places, that it’s not too loud or too busy.

Last year for the first time we put George on the ice-skating rink. We managed to sit him on this seat and one of the members of staff pushed him around for me. Seeing his happy little face was just brilliant, it made my Christmas.

They also put on a show we can actually enjoy without worrying about meltdowns or cost. It’s wonderful to sit and watch it as a family. We’d never be able to go and see a normal panto, firstly because of how expensive it is. A lot of families with disabled children struggle to work because of their children’s care needs but we’re also reluctant to lay out that sort of cost because we could get in there and have to walk straight back out. To go to a show and know we can go in the sensory room for a bit if we need to is such a relief. Nobody is going to start tutting at me if one of my children starts screaming because he’s having a meltdown.

It’s horrible being made to feel unwelcome in places but when I walk into an event with SNAAP I can breathe a sigh of relief when I see all the friendly faces. SNAAP has honestly opened up the world for my children and for me.

SNAAP is supported by The National Lottery Community Fund who have invested more than £1.87 billion into over 27,000 projects across the UK that bring people together and strengthen community connections.  Find out more and apply for funding.

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