It can be upsetting and lonely having a child with a disability, but Wendy Smith would rather shout about the many positives. Steven Russell hears how love and kindness trumps any anger and bitterness
It’s hard to imagine being a new mother, still a bit woozy after an emergency caesarean, and being told, “We know there is brain damage, but to what extent only time’s going to tell.”
“I didn’t know what to think,” Wendy Smith remembers. “‘Brain damage? Is that something that gets better?’ There were several occasions when we nearly lost him, because he was so poorly. But Matt being Matt, he rallied round.”
Life for the Smith family since that November morning in 1980 has featured plenty of love and triumphs – and some darker days that have tested resolve and spirit.
It’s all there in Wendy’s book Nose Over Toes – the title a reference to a physiotherapist’s advice to young Matthew when he was striving to stand unaided. His painfully-thin legs didn’t look strong enough to support his weight, but the determined lad had plugged away.
Wendy’s account tells of a life where a disability was a huge factor but where that condition was not allowed to dominate life. “It’s my account of the trials, tribulations and triumphs that have beset an ‘impaired’ child, together with the impact on their family and friends.” But mostly, she says, “I wanted to share and celebrate the achievements no matter how great or small”.
Take this extract when Matt was of playgroup age. “Almost without exception, everywhere we went and everyone we met was captured by Matthew’s lovely sunny nature and sheer joie de vivre,” she writes. “I know I am biased but his smile could melt ice-caps!” There are memories about lovely family holidays from Disney World to the Isle of Wight, super times shared with beloved grandparents, driving go-karts, playing football, a passion for Manchester United, the joys of fishing and much more.
Wendy acknowledges that Matt’s life has shaped and influenced the whole family. “It would be arrogant and unrealistic to suppose we are better people because of this. I do, however, like to think we are more enlightened, tolerant and certainly able to find the funny side of life.” She adds: “If our story can help or inspire other families then it has been a worthwhile exercise.”
Thirty-five years ago, with a big weekend bonfire party planned for family and friends, Wendy’s waters broke at 11 o’clock the night before. Things didn’t progress as expected and hospital staff began monitoring the baby’s heartbeat. By about 7.45pm, Wendy remembers, a doctor said her unborn son wasn’t happy and an emergency caesarean was needed. They had to wait for an anaesthetist to become free, she says, before Matt could be delivered.
Later, at home, Matt was “ever such an easy baby. Very contented. Ever such a happy, jolly little chap”, Wendy remembers. “Everybody kept saying ‘He’s so alert.’ He was moving his arms, moving his legs.”
But they saw a paediatrician when their son was three months old. Matt (who in the womb had the umbilical cord wound tightly around his neck) had athetoid cerebral palsy. This follows damage to part of the brain during or shortly after birth. The affected area manages co-ordination and posture.
“All the lovely movements we thought he was making were involuntary. We started physiotherapy when he was five months old and speech therapy when just over a year old. So then it was a constant round of (physical) exercises and speech exercises.”
“Often and loudly”, they’d play the Billy Ocean song When the Going Gets Tough to help spur them on. Patience and persistence have proved vital over the years – definitely for Matt, of course, but also for mum and dad, as they sought to do the best for him. There was, for instance, a struggle to get him into Thomas Wolsey School in Ipswich for children with physical and/or sensory needs, because the family’s home county of Essex had to be persuaded. Matt spent a couple of years there before being able to move on to a mainstream primary school at Alresford, then The Colne Community School and College at Brightlingsea, The Sixth Form College in Colchester, and – finally – the University of Lincoln. Matt graduated with a degree in journalism and English.
He’d been determined to go to university, though a hip problem – initially thought to be a groin strain – threatened to puncture the dream in 2000.
X-rays came back “and it was just shocking”, says Wendy. “Matt had no hip and socket. It was like a saucer; so every time Matt was standing up, his hip was dislocating. And no amount of physiotherapy was going to put that right…”
He finished his A-levels on a Friday in July and went into hospital in London on the Monday. He was there for 10 days, coming out with plaster from the top of his legs to his ankles – and with a broomhandle to keep his legs apart as they healed.
The plaster came off at the end of the August and was followed by intensive physiotherapy as Matt set his sights on freshers’ week. “He really worked his socks off, to get himself on his feet, ready for the first semester in September,” says Wendy.
Matt liked Lincoln so much that he’s put down roots, visiting the family home near Colchester every couple of months or so.
“When he decided to stay, I was totally happy for him,” says his mum. “He’d made a lot of friends and discovered this lovely bungalow. He lives with a team of carers and has a good life. It’s not that far away.”
Matt is busy with charity and advocacy work. He’s heavily into powerchair football – soccer indoors, in powered wheelchairs – and plays for Nottingham Forest. Matt’s also a qualified coach.
Matt says he knows of many children with cerebral palsy whose families are struggling to get support, “which is a bit sad in this day and age.
“It might sound silly, but I consider myself one of the lucky ones. We got a lot of money in compensation, which is supposed to help me throughout my life, but so many other families don’t have that money.”
Wendy remembers being shocked by the cost of equipment for disabled people. “An outdoor wheelchair was the same price as a brand new Ford Escort – £8,000! And knives and forks with bigger handles, you were talking £5 or £6 each.”
It was only when Matt was 12, and went to Great Ormond Street Hospital to be assessed for computer equipment, that the family wondered about seeking compensation to help towards his future needs ? including care, housing, transport and health problems.
“Years before, when people said to us ‘You really should see if you can get some compensation’, our thoughts always were ‘Barry was earning well, there was nothing Matt could want that we couldn’t provide, and no amount of money was going to put things right for him.’ And then this equipment came up.”
It was “a wonderful system operated by switches on his wheelchair”. It would help greatly. “But it was a fantastic price” – £1,500 – and out of reach.
It took eight years for Matt to be assessed by numerous experts and for a settlement to be agreed with the then health authority, says Wendy.
The sum, “substantial”, has to meet Matt’s lifetime needs.
He points out that help to pay for carers would make a big difference to many people with disabilities and their families – giving a valuable degree of independence – but care costs £10 an hour upwards. “If you use an agency, it’s double that; and many people just cannot afford it.”
Does society better understand conditions such as cerebral palsy than it did in the past? Are we good at looking past the disability and at the person as a whole?
“You can’t (make comparisons),” feels Wendy. “People are different. Some are very accepting. Some don’t want to know. There have been people terrified of ‘catching it’ off you, haven’t there, Matt?” The last time was perhaps a decade ago.
“If I can cut in, I think the younger generation are more tolerant of disabilities,” says Matt. “They can Google now and they are a lot more understanding. Obviously, you still get some narrow-minded idiots, but I think it’s getting better.
“Can I just add that this book is, hopefully, designed to inspire other families in similar situations, and I am so thankful for having such a wonderful family and a great network of friends.”
n Nose Over Toes is £9.99 (plus postage) and can be bought via www.ftrr.co.uk and at Red Lion Books, Colchester and Wivenhoe Bookshop.
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