54 ealife Saturday, May 31, 2014 life myea Tell us about your ealife... Write to: My ealife, 30 Lower Brook Street, Ipswich IP4 1AN or email ealifemag@a rchant.co.uk Our place If your child wasn’t sitting up and crawling like everyone else’s, you’d want them to get all the help they could – and you’d be grateful for the friendship of parents in the same boat. Emma Wright tells Steven Russell about a place that’s given her so much T wo-year-old Sienna has her bare feet in a tra y of sand and is pretty happy about feeling the grittiness between her toes, judging by the look on her face. She’s also intrigued by the little girl alongside, having fun with her own mini-beach. Sienna loves coming here. For about two-and-and-a-h alf hours, once a week, her world is a lively one of songs, art and craft, drama and movement – all designed to give her the best possible start in life. It’s often nice and mess y and squidgy. (For instance: rubbing feet in paint!) “When she gets here, she knows where she is,” says mum Emma Wright. “She cries in the car – she’s generally not good in the car – but as soon as she gets here she’s fine and relaxes straight into the session.” You’d never know that this bright and inviting building at Sproughton, near Ipswich, is a converted pig nursery. Nowadays it’s got a slightly cumbersome name: The Dame Vera Lynn Trust School for Parents in East Anglia. What’s important is that it works with families to help children with motor learning difficulties such as (but not just) cerebral palsy – anything, in fact, that has caused a delay in the acquisition of physical skills. It draws on the “conductive education” methods of the Peto Insti tute in Budapest, Hungary – stimulating and awakening the senses with activities and experiences that are fun for the child and parent. While those exercises and activities are clearly beneficial for her daughter, Emma also values the social contact. She suspects it would be easy to become isolated as the parent of a child with cerebral palsy , unable to do t he same things as toddlers of the same age. Here , there’s none of that subconscious pressure to measure up. The trust is a charity that relies on fund-raising and generosity to keep the doors open, and reckons it costs about £7,500 a year to help each family. The state doesn’t offer anything similar, apparently, for youngsters from birth to the age of five. What if it didn’t exist? “We wouldn’t know it, but there would be a big gap,” says Emma. “It is a special time when we come here. It’s nice to come out of the home and do these things without distraction; and to meet other people as well. Chatting has been really good. “I perhaps wouldn’t have met the people I know without coming here. It’s good for me that I get to share (thoughts) with other parents and good for Sienna that she’s meeting other children and getting the therapy and exercises. It’s brilliant, really.” Towards the end of her pregnancy, Emma explains, she could not really feel her baby moving. Hospital checks revealed Sienna needed to be delivered. Fast. “The night she was born, they said she’d been depri ved of oxygen, so to expect problems later on. She had a brain scan (about 10 days later) which revealed there was damage to the brain.” Initially quite poorly, Sienna spent a fortnight in Norwich, being treated, before coming back to Ipswic h Hospital for a couple of weeks – mainly to sort out her feeding. An insensitive question – sorry – but what goes through a mother’s mind at such a time, seeing her first-born in ne ed of care? “I don’t know, really. I think it was all a big shock. You don’t expect that. You read all the magazines and everything, and you very rarely hear about (anything unusual). Everything was going fine, the pregnancy, so yes, it was a bit of a crazy time. Quite upset ting for us. “It didn’t really sink in to start with. It was only over time that it did. Kept thinking it was all a dream, really, when we got back home.” As Emma and husband Phil’s daughter grew, the developmental gap widened with other child ren of the same age. She smiled at seven or eight weeks, but then progress slowed with skills such as sitting up and holding up her head. A physiotherapist put Emma in touch with the trust school at Sproughton when Sienna approached her first birthday, “and we haven’t looked back”. “She loves being with other children. She watches them and copies them. Last week, with the standing-up-by-the-bench, she saw her little friend grab the bench, and she did the same thing. That’s been really good. “She loves to stand. She’s got a standing frame at home and will stand up for quite some time. She’s getting better at sitting. She’s got this Lycra suit that gives stability round her trunk and stops her being so wobbly,” says Emma, who works part-time with Suffolk County Council. On the day we meet, she reports that Sienna has recently started to move her feet, showing sign s of wanting to walk. Her daughter smiles and laughs and is generally a happy soul. She loves music and singing, and recognises nursery rhymes. Twinkle Twinkle Little Star is a favourite. Alison Stonham, head of early years, says the school would love to grow. It’s at capacity, helping 25 families, but it always comes down to money. The school began in 2000. When it hit financial trouble a decade later, it was taken under the wing of The Dame Vera Lynn Trust, which has a similar centre in Sussex. There’s no catchment area; families come from places as far flung as Basildon, Colchester and Brandon. The emphasis is about building on strengths, rather than acknowledging weaknesses. “To see ‘the child’ before ‘the disability’ is our main aim – working out how we can maximise their potential,” says Alison. “In these day s of the internet, parents tend to d o quite a lot of research and they get quite a black picture. And, actually , we can say ‘See little Johnny first’ and ‘This is what he’s going to be able to achieve’.” If only there were a bottomles s purse… Alison admits public support of fund- raising events would be just perfect. Speaking of which, staff organised a ball last month. “We don’t just wor k her e. I t’s a passion for all of us, and we’re trying always to think of innovativ e ways to help keep the funding streams coming in.” www.dvltrust.org.uk To see ‘ the child’ be f or e ‘ the disabili t y’ is our main aim – wor k ing ou t ho w we can ma ximise their po ten tial special S ien n a an d m um Em m a Wr igh t h ave f un at th e Dam e Ve r a L yn n T r ust S ch ool f or P ar en ts at S pr ou gh ton . ■ It’s all about experiences at the Dame Vera Lynn Trust School for Parents, as Emma Wright and daughter Sienna demonstrate. Inset left, Alice Wade and mum Michelle get their hands wet. Photos: SARA THOMAS