54 ealife
Saturday, May 31, 2014
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Our placeIf 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
Two-year-old Sienna hasher bare feet in a tray ofsand and is pretty happyabout feeling thegrittiness between hertoes, judging by the look
on her face. She’s also intrigued bythe little girl alongside, having funwith her own mini-beach.
Sienna loves coming here. Forabout two-and-and-a-half hours,once a week, her world is a livelyone of songs, art and craft, dramaand movement – all designed to giveher the best possible start in life. It’soften nice and messy and squidgy.(For instance: rubbing feet in paint!)
“When she gets here, she knowswhere she is,” says mum EmmaWright. “She cries in the car – she’sgenerally not good in the car – butas soon as she gets here she’s fineand relaxes straight into thesession.”
You’d never know that this brightand inviting building at Sproughton,near Ipswich, is a converted pignursery. Nowadays it’s got a slightlycumbersome name: The Dame VeraLynn Trust School for Parents inEast Anglia.
What’s important is that it workswith families to help children withmotor learning difficulties such as(but not just) cerebral palsy
– anything, in fact,that has caused adelay in theacquisition ofphysical skills.
It draws on the“conductiveeducation” methodsof the Peto Institute inBudapest, Hungary –stimulating andawakening the senseswith activities andexperiences that arefun for the child andparent.
While those exercises andactivities are clearly beneficial forher daughter, Emma also values thesocial contact. She suspects it wouldbe easy to become isolated as theparent of a child with cerebralpalsy, unable to do the same thingsas toddlers of the same age. Here,there’s none of that subconsciouspressure to measure up.
The trust is a charity that relies onfund-raising and generosity to keepthe doors open, and reckons it costsabout £7,500 a year to help eachfamily.
The state doesn’t offer anythingsimilar, apparently, for youngstersfrom birth to the age of five. What ifit didn’t exist?
“We wouldn’t know it, but therewould be a big gap,” says Emma. “Itis a special time when we comehere. It’s nice to come out of thehome and do these things without
distraction; and to meet otherpeople as well. Chatting has beenreally good.
“I perhaps wouldn’t have met thepeople I know without cominghere. It’s good for me that Iget to share (thoughts)with other parentsand good for Siennathat she’s meetingother childrenand getting thetherapy andexercises. It’sbrilliant, really.”
Towards theend of herpregnancy, Emmaexplains, shecould not really feelher baby moving.Hospital checksrevealed Sienna needed tobe delivered. Fast.
“The night she was born, they saidshe’d been deprived of oxygen, so toexpect problems later on. She had abrain scan (about 10 days later)which revealed there was damage tothe brain.”
Initially quite poorly, Sienna spenta fortnight in Norwich, beingtreated, before coming back toIpswich Hospital for a couple of
weeks – mainly to sortout her feeding.
An insensitivequestion – sorry – butwhat goes through amother’s mind at sucha time, seeing herfirst-born in need ofcare?
“I don’t know, really.I think it was all abig shock. You don’texpect that. You readall the magazinesand everything, andyou very rarely hear
about (anythingunusual). Everything was goingfine, the pregnancy, so yes, it was abit of a crazy time. Quite upsettingfor us.
“It didn’t really sink in to startwith. It was only over time that itdid. Kept thinking it was all adream, really, when we got backhome.”
As Emma and husband Phil’sdaughter grew, the developmentalgap widened with other children ofthe same age. She smiled at seven oreight weeks, but then progressslowed with skills such as sitting upand holding up her head.
A physiotherapist put Emma intouch with the trust school atSproughton when Siennaapproached her first birthday, “andwe haven’t looked back”.
“She loves being with otherchildren. She watches them andcopies them. Last week, with the
standing-up-by-the-bench, she sawher little friend grab the bench, andshe did the same thing. That’s beenreally good.
“She loves to stand. She’s got astanding frame at home and
will stand up for quitesome time. She’s
getting better atsitting. She’s gotthis Lycra suitthat givesstability roundher trunk andstops her beingso wobbly,” saysEmma, who
works part-timewith Suffolk
County Council.On the day we
meet, she reportsthat Sienna has recently
started to move her feet,showing signs of wanting towalk.
Her daughter smiles and laughsand is generally a happy soul. Sheloves music and singing, andrecognises nursery rhymes. TwinkleTwinkle Little Star is a favourite.
Alison Stonham, head of earlyyears, says the school would love togrow. It’s at capacity, helping 25families, but it always comes downto money.
The school began in 2000. When ithit financial trouble a decade later,it was taken under the wing of TheDame Vera Lynn Trust, which has asimilar centre in Sussex.
There’s no catchment area;families come from places as farflung as Basildon, Colchester andBrandon.
The emphasis is about building onstrengths, rather thanacknowledging weaknesses. “To see‘the child’ before ‘the disability’ isour main aim – working out how wecan maximise their potential,” saysAlison.
“In these days of the internet,parents tend to do quite a lot ofresearch and they get quite a blackpicture. And, actually, we can say‘See little Johnny first’ and ‘This iswhat he’s going to be able toachieve’.”
If only there were a bottomlesspurse…
Alison admits publicsupport of fund-raising events wouldbe just perfect.Speaking of which,staff organised a balllast month. “We don’t
just work here. It’s apassion for all of us, andwe’re trying always to thinkof innovative ways to help keepthe 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 eVe 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
