Family values

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Parents must support each other in the community if we are to ensure inclusion for children with SEN

My daughter Evie was born after a problem-free pregnancy and straightforward labour, so my husband and I had no reason to think she would have any developmental issues. But by the time Evie was one, we had been told that she wasn’t meeting milestones and was showing signs of autism.

This wasn’t what we were expecting or how we had dreamed things would be. Having a family is meant to be a joyous time, sharing each milestone and saying things like: “Don’t they grow up quick?” and “They’re into everything at this age”. Instead, we were thinking: “Why isn’t Evie doing that yet?” and “What are we doing wrong?”

We felt lost, confused and alone, not knowing any other families with a child who had additional needs. We grieved for what we thought should be, and slowly got used to weekly appointments with physios and other therapists, all of which added to the feeling that our family was different. Suddenly, our lives seemed to revolve around appointments and discussions with professionals two or three times a week. We never seemed to have the chance just to enjoy being a young family.

I heard about a local support group, and went along to meet other families in similar situations. But the group was run by the same therapists we saw every week, so it was never really an escape.

The words of one paediatrician stuck in my head: “Carry on doing things as you are. The best thing for any child is a normal life.” So that’s what I did. I started taking Evie along to playgroups. She has sensory processing problems and easily becomes anxious, so her behaviour could be distressing to watch, but a familiar environment helped her desensitise and the other families got to know us and came to understand why Evie acted differently to their own children.

The escape from constant discussion of Evie’s problems was a welcome relief. She happily sat next to other children at snack time, gained a lot from watching them play and soon settled into the nursery. I believe she benefitted from that inclusive environment, and the other children did too. Our confidence and feeling of acceptance as a family grew.

Gradually, I became more involved and started helping to run the groups myself. I hoped to reach out to parents who needed support, just like I had.

Additional needs aren’t always visible. They need patience and understanding, and parents need a support network of people who know what they are going through. It helps if some groups are run for parents by parents, not by professionals, so that it’s an escape from everything else.

I introduced the use of signs and symbols at our playgroups to aid communication for all children. We arrange weekly access to a sensory room and hold monthly swimming sessions at the local pool, as many children with additional needs find the water reassuring because it helps support their bodies.

Evie is now four and I’m starting up a weekly support group, so local families can come together and share their experiences. We also sarahtry to spread the word in our community about additional needs and common misconceptions. With government funding in this area being cut, it’s up to us in our communities to fill the gap. A support network can make a vast difference to families with additional needs. The rewards are also immense for me; I’m really enjoying it and I know how much Evie gets out of it too.

Further information

Sarah Moore volunteers for the Bassetlaw branch of NCT, a UK charity for parents:
www.nct.org.uk

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