Living with special needs: Life with our Incredible boys
WHEN a child is born with a disability it is not just their lives that are affected, it also means that life for their family is never going to be the same again.
WHEN a child is born with a disability it is not just their lives that are affected, it also means that life for their family is never going to be the same again.Features writer Ann Molyneux-Jackson spoke to two Peterborough families about their experience of living with youngsters with special needs.
Spencer Raby's habit of splattering the walls with food at mealtimes, biting bananas when the skins are still on, grabbing everything in sight at the supermarket and taking things out of cupboards are typical behaviour for a toddler.
He loves singing and is able to say a few words. "Mum", "What's that?", "ghost" and "pirate" are his favourites. There are also tantrums if he doesn't get his own way.
But Spencer is not a toddler. The youngster, who lives in Orton Longueville, Peterborough, with his doting parents Lisa and Karl, is 10 years old.
He's a normal height for a ten-year-old, but because he was born with the condition dysgenisis of the corpus callosum, meaning that the part of the brain that sends out messages has not formed properly, he behaves like a two-year-old, so is hard to control and has to be watched constantly.
"He's inquisitive, he likes looking in cupboards and putting things in his mouth," said his mum, Liza Schwarz.
"The other day he picked a wasp up in the garden and was stung several times, and he will get into the shower, put on the power and not think to get out because it's too hot."
Meet fellow parents at event
PARENTS of children with disabilities can meet other people in the same situation and discuss issues that affect them at the first official meeting of a new support group.
The Parents' Forum will take place on Friday, 22 May, from 10.30am to 1pm.
The event is taking place at the KingsGate Conference Centre at 2 Staplee Way, Parnwell, Peterborough.
To confirm your attendance, call Bev Walsh on 01733 327149, or e-mail bev@vsforum.org.uk.
"You have to watch where you put a cup of coffee as he will just pour it on the floor. He has no awareness of any danger.
"It's like having a baby, you have to think for them."
Spencer also has severe developmental delay and hypotonia, a disorder that causes reduced muscle tone and problems with his left foot, which is not growing at the same rate as his right one.
He has recently been diagnosed with dystonia, which can cause uncontrollable muscle spasms, and he has keratakonus, an eye disease affecting the cornea that can cause distorted vision, sensitivity to bright light and, in extreme cases, blindness.
His parents first realised something was wrong when Spencer was five months old and having feeding problems, but many trips to and from the doctors and a handful of scans of his brain followed before his condition was finally diagnosed.
An early scan had shown that Spencer's brain development was several months behind what it should have been for his age but no explanation was given for why this was. Then when he was six years old, doctors discovered that part of his brain was missing.
It's perhaps fortunate because of the amount of time he has to spend in them, that Spencer loves doctors and hospitals and is fascinated by medical equipment. So much so that his mum has bought him a blood pressure cuff and a stethoscope
"He loves going to see the doctor, when I tell him he's going to see the doctor it's like it's Christmas," said 39-year-old Liza.
"When I told him he was going to the doctor today he cried his eyes out because he wanted to go last night. He doesn't understand 'tomorrow' or 'next week'."
Spencer didn't start walking until just before his fifth birthday, a milestone which was all the sweeter for his family who had almost given up hope that it would ever happen.
Continues on next page: "One day he just walked down the school corridor but he didn't realise his achievement,"."One day he just walked down the school corridor but he didn't realise his achievement," said Liza.
"He never did toddler things such as pulling himself up with the furniture, he didn't have the muscle strength, and he still finds it difficult to go up and down stairs."
Liza has been unable to potty train Spencer, so he still has to wear nappies, but he has clearly overcome his early feeding problems and now has a healthy appetite, although his mum tries to steer clear of serving up anything runny.
"He does feed himself, but prefers finger food, he can't have chicken casserole or anything like that, or it just ends up all over the walls," she said.
"He's very loving and cuddly, but he's challenging as well," said Liza. "He has temper tantrums, so I won't go out on my own with him without his wheelchair, and at night he wakes up and runs around his room."
Spencer has been a pupil at Phoenix School, in Orton Goldhay, Peterborough, since moving to the city with his parents three years ago.
At school he is taken on day trips, and can ride a specially made bike. Much-needed respite care of one night a week, one weekend a month and a Saturday, once a month, for his family is provided at Cherry Lodge, in the grounds of the school.
"It's mentally and physically draining having your wits about you constantly," said Liza.
"Sometimes he's lovely and sometimes he's scratching, pulling hair and being aggressive. When he's in respite, I tend to stay in and just sleep."
Liza and Karl have also used Spencer's absences to complete an extension on their house, where the youngster now has his bedroom and a wet room.
Having to concentrate on her son's needs means that Liza has had to put her own ambitions on hold for many years.
When Spencer was a baby, Liza worked as a mobile hairdresser and would take him with her to people's houses. She now runs her own business having opened Spencers hair salon in Park Road, Peterborough, last March.
"I felt a real sense of achievement when I opened the salon, although it is hard work building up a business," said Liza.
She met her husband, 34-year-old Karl, six years ago after her relationship with Spencer's dad broke down. The couple will celebrate their third wedding anniversary in June.
"Karl has been a wonderful stepdad, although it was a bit of a shock for him taking on a son with a disability when he didn't have any children of his own," said Liza.
"I met him on holiday when I was with my mum and Spencer was with me, so there was never the problem of introducing them, because Spencer was always there.
"When we got married, Spencer was a pageboy. He walked up the aisle and although I couldn't see him I was told he was beaming all the way down."
Continues on next page: 'We get so much pleasure from him achieving the slightest things''We get so much pleasure from him achieving the slightest things'
WHEN Morag Winston cradled her newborn son Harry for the first time she cast her eye over his features, trying to see who he took after, and finally decided that he looked just like his grandad.
Caught up in the moment of holding her little boy in those hours after his birth, she didn't notice that he had square hands, fingers that curved in, a big gap between his big toe and the rest of his toes and three openings in his skull, all telltale signs that he had Down's syndrome.
Looking back now at photographs of Harry, who is now 12, when he was a baby, Morag says it's obvious that he had Down's, but at the time she tried to put it to the back of her mind.
Morag and her 45-year-old husband, Paul, had to face an agonising five-day wait for blood test results before being told that their son had the condition.
Morag had been a staff nurse on the children's ward at Hinchingbrooke Hospital, near Huntingdon, where Harry was born, and it was one of her former colleagues who had to break the news to her.
When he was seven months old, Harry started fitting, he was eventually diagnosed with West Syndrome, infant epilepsy which causes almost constant fitting, and almost died on his second birthday following an episode. Four years ago, he was also found to have autism.
"He communicates through his expressions and sign language," said 46-year-old Morag, who lives with her family in Eastgate, Deeping St James.
"He likes anything musical and he loves switches, he has ones for the fibreoptic lights that stream across his bedroom walls and ceiling, and one for a bubble machine.
"He likes playing guitar and he likes playing football in his own way, he throws the ball to his brother Edward so he can kick it in the garden."
"One of the best things we have bought for him is a hot tub," said Morag.
"Every night when he comes in from school he gets in it. It's good for his circulation."
Harry, who has been a pupil at Willoughby Special School, in Bourne, since he was three, still has to wear nappies, and he is unable to feed himself.
Going on holiday with children can be stressful at the best of times, but it's all the more difficult for Morag and Paul, who have to consider wheelchair access and a child who doesn't like loud noises, but loves the sea a bit too much. Once again they are heading for a resort, near Barcelona, in Spain, this year.
"It's really difficult getting Harry away from the sea, so we don't tend to take him swimming," said Morag.
"He gets so excited when he is going swimming that he just loses it and we end up being an exhibition."
Continues on next page: "We flew for the first time last year. Harry doesn't like loud noises, but he absolutely loved flying.""When we go on holiday, we usually get a paddling pool in the garden of the apartment, fill it with water and put him in it."
Morag added: "We flew for the first time last year. Harry doesn't like loud noises, but he absolutely loved flying."
Harry was two years old when his younger brother Edward (now 10) was born.
"It has been like having twins, even though there is a two-year gap, it was like having another baby at that stage," said Morag.
"Edward doesn't know any different as he has grown up with Harry. He takes it in his stride."
There are moments when Edward does get frustrated with his older brother's behaviour.
"He had made a gingerbread house and was just finishing it off when Harry threw it on the floor," said Morag.
"We have no ornaments in our front room because he would just smash them and he broke our old TV when he hit it with a toy, so now we have one on the wall that he can't reach at the moment."
But Morag believes it was the couple's older children, Matthew (20) and 18-year-old Emma, who found it most difficult when Harry came into their lives.
"I think it affected my two older children more because they were eight and 10 at the time," she said.
"Matthew can't cope with him hitting out and hitting himself, he just can't understand it, and Emma is very good with him."
Morag says that having Harry has had a positive effect on her relationship with Paul, a commercial director for a construction company.
"I think it's made our relationship stronger and we comfort each other when things are difficult," she said.
The respite care that Harry has in Boston for three nights a month is a lifesaver for his family.
"It means I'm able to go and visit my sister or Edward, and I go to the pictures. It gives us quality time with him," said Morag.
"Having Harry around has become the norm and it gives us snippets of what normal life is like when he's in respite," said Paul.
"We don't have to worry that he'll walk out of the door or pick up a knife."You can do what you can never do normally because you're thinking of the consequences of Harry following you around."
It also allows the family to indulge their passion for Luton Town Football Club, and they were all able to make the trip to Wembley to see the Hatters win the Johnstone's Paint Trophy last month during one of his stays away.
But Harry has clearly enriched their lives.
"We get so much pleasure out of him achieving the slightest things like learning to walk or climbing up stairs," said Paul.
"Things that are normal for normal children."
Meet fellow parents at event
PARENTS of children with disabilities can meet other people in the same situation and discuss issues that affect them at the first official meeting of a new support group.
The Parents' Forum will take place on Friday, May 22, from 10.30am to 1pm.
The event is taking place at the KingsGate Conference Centre at 2 Staplee Way, Parnwell, Peterborough.
To confirm your attendance, call Bev Walsh on 01733 327149, or e-mail bev@vsforum.org.uk.
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Wednesday 17 March 2010
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