To give you a brief background, I have 5 children, well Chris and I have 5 children, 2 home-grown daughters, 3 adopted sons, James being one of them and 2 granddaughters. The boys all came as foster children, just for a month they said with each placement and the months turned into years, which is fortunate for us as they are as much part of us as the girls. We have just resumed fostering after a 12 year break and currently involved with respite care, weekends and holidays (this is our weekend off) along with the before and after school child-minded children, + a dog and cat, life is never dull in our house, sometimes it is a pleasure to escape to work.
29th January 1982 was the day that was to change our lives forever. James a 3 week old baby whose only ‘problem’ was that his feet and legs were in plaster casts having been born with ‘talipes’ or club feet, needed foster parents who lived close to the hospital. 3 years and 10 months later after surviving on shifts of 2 hours sleep a night, (it was a relief to go on night shift in those days) colic, tantrums, woe betide if the cat or the dog got in his way, or who put that piece of leggo back in the wrong box, everything was colour coded, the whole lot would go, chairs and tables overturned in nursery, food allergies, hyperactivity, constant ear infections, mystery viral infections, ever heard the one ‘if in doubt it’s a viral infection’ well he had more than his fair share, unsuccessful operations to correct the talipes, reactions to anaesthetics, medicines, I could go on….. By this time we more or less guessed that he had ‘one or two little problems.’ It was during one of his & Chris’s stays in hospital, this time the Dental ward to have all his teeth removed (for which Chris was blamed for giving him orange juice in a bottle), that we met a Consultant who himself had a hyperactive child. So we joined the Hyperactive Support Group and within days of removing all additives from his diet. He slept from 11 pm until 4 am, we rushed in to see if he was still breathing, and for the next few years we were to have at least 5 hours sleep a night. So began the slow process of behaviour modification, working in seconds and then minutes, patience was the rule of the day.
From Hyperactivity we moved on to Dyspraxia. I will miss out the next 6 years of orthopaedic surgery, various other illnesses and stays in hospital and go to the diagnosis. Chris was always adamant that there was more wrong with James than the medical profession or I would admit. I always felt ‘that with patience, things would come right in the end’.
I will never forget that day in October Half Term 1993 (11 years since we first queried problems with his sight), all in the imagination they said, he has a wide bridge to his nose, until at 2 1/2yrs a consultant finally said, where have you been this child is so short sighted he is almost blind in one eye. We told him exactly where we had been, back and fore to clinic every 3 months, but I digress. I took James to see the Ophthalmic Consultant, (we had been referred by our Paediatrician after yet another stay in hospital) only to find that there was no clinic, I can assure you they soon found a Registrar and then being told in a corridor, that yes your son has RP and he will be blind by the time he is 18 years old. How was I going to go back and tell Chris, she had only stayed at home, because it was half term and at that time we had 4 other foster children including a 3 month old pre-adoption baby who was meeting her new parents for the first time that day?
It was to be another 4 months before we had the diagnosis of LMBBS, was it Refsums or was it Ushers, losing the blood samples and starting again, how James hated those needles. James was still in and out of hospital, with inexplicable high temperatures, extreme burning pains in his legs, you could almost fry and egg on them, presenting with M.E. like symptoms, weight gains of up to 7 lbs in a weekend, he was ballooning in front of our eyes. One consultant even told us ‘that he couldn’t possibly be in pain as his legs were far too fat, and then discharged us’. I will leave you to imagine Chris’s reply!!! Eventually Chris and her constant searching found LMBBS and presented it to the Consultant and Psychologist, ‘Ah yes’, they said, it was next on our list.
For Chris there was an initial euphoria, in that at last someone believed her, but that wasn’t to last as the guilt of the wasted years set in. Chris contacted the Society and we attended our first day conference at the end of February, 1994, but all of that and our current involvement with the Society is another story.
I had great difficulty accepting the diagnosis. We have always been a close family, but whilst Chris was in the depths of despair, I was in denial; this was my son, if you didn’t talk about it, it wasn’t happening, and everything would come right in the end. This went on for over a year, with neither of us being able to talk about the real issues. Home life changed, we decided that we could no longer foster any more short term children. Chris and James were frequent visitors at Great Ormond Street, where at least Chris felt she was being taken seriously and all that had happened over the last 12 years slotted into place.
With the help of our daughters I became the ‘house-husband’ caring for Andrew & Ross, who were 8 & 7yrs at that time, (how does one coloured sock always get into the washing machine with the whites). There were also frequent local hospital appointments and for a time LMBBS seemed to dominate our lives.
Of all the problems that James has and has had, it was the prospect of him losing his sight that has affected me the most, because I can’t visualise my life without sight, and I think that this is the case for the majority of parents I have talked too, but for James the deterioration has been gradual, (he was already losing his sight when diagnosed) allowing him to use different strategies and coping mechanisms in his day to day life.
15 months into ‘Life with LMBBS’ and a make or break appointment with a counsellor, who was herself visually impaired. For the first time we were able to discuss our feelings in depth, although harrowing, this was the start of the acceptance of the syndrome and the return back to family life.
In 1997 a simple surgical procedure on his leg, in preparation for major surgery on both knees, damaged a nerve, leaving James in constant pain, needing to wear a calliper, virtually wheelchair bound and receiving home tuition. This was to last almost 2 years and was one of the lowest points in James’ life, leading to depression and weekly visits to the pain clinic, taking a cocktail of analgesic and anti depressant tablets daily and for the first time questioning ‘Why do I have LMBBS’. A difficult and heartrending question to answer as most of you will agree, but out of this came a change in our Father/son relationship because until then James, and I think most fathers will agree, was very much his ‘Mother’s son’, with a very strong, dependent bond, but this gradually changed, with James and I becoming closer as I became more involved in his personal care and daily needs.
James has a wicked sense of humour, warped in fact; he likes nothing better than a good laugh. Two of his favourite comedians are Brian Connelly and Joe Pasquale, who we went to see at the Cardiff International Arena last year. Oh how he laughed. We often visit the cinema, I do however draw the line at the Blood and Gore films which he relishes, so what does he do, asks one of his family aides to take him, saying ‘Dad’s a wimp’
Since that 2 year blip in his life, his sheer determination to overcome his pain, dispense with the calliper, wheelchair, all medicines and his acceptance of the syndrome, James has been fantastic. Looking back, he has always enjoyed his life to the full, always a popular member with his peer group and staff in school and college, but since his late teens his love of extreme sports has given him a whole new dimension and me a head of what’s left of very grey hair.
There was a tendency in the early days to make him too dependant on us, afraid to let him venture too far in case anything happened. It’s always the ‘firsts’ that you remember, the first day of cane training, he loved it, (we cried) a couple of hours a week out of school and a rehab officer who used to take him for jam do-nuts, his second, our very own Sue King wasn’t as generous, but soon learned that a knowledge of Star Trek and Star Wars went a long way. Then there was the first Braille lesson, again the tears from us, the laughter from him, when he succeeded with his homework and his mother failed, I didn’t attempt it, and so it went on.
Initially James refused to use his cane on his own or with us, preferring to fall over rather than be seen to be ‘different’ as he put it. (I think this is something that all the adults here will agree with). Eventually he realised that if he wanted his independence he would have to resume cane training, which is where Sue King came back to help. I must say she has taught him well. Goodness help the person who tries to walk in front of his cane, they soon receive a sharp knock on the ankles, as he says ‘they can see me, I can’t see them’, the bane of his life is ‘Mother’s and pushchairs,’ they never seem to see him until he walks into them.
You have to put your trust in other people to care for your sons/daughters as you would, and that is not always easy.
Sue King left and a new Rehab Officer replaced her. After several weeks training, the time came for him to use public transport on his own, how I worried; there have been times when he has caught the wrong bus. On one occasion it had been snowing and we didn’t want him to go out, but……. Mr Independent insisted, he was 2 hours late returning, I had contacted the Police and Hospital only to see him walking down the drive,(he had got on the wrong bus and ended up in another village) oh the relief. (I didn’t dare tell him about the phone calls, any way his Mother made me do it) I wish he would use a mobile phone; he has one, but keeps it switched off in case his mother or sisters try to contact him.
For those of you who know James, he is a happy go lucky young man, registered blind, with a love of extreme sports, with 2 mottos ‘Who needs sight to achieve their ambitions’ and ‘No gain without pain’ and he has certainly experienced that.
In 2001/2 in order to raise funds for the Society, he embarked on a healthy eating plan and lost 8 stone, when a member of the family suggested he attempt a tandem parachute jump. Incidentally, as a result of the weight loss he no longer needed orthopaedic surgery. He loves Star Wars, Star Trek, gory horror films and Aikido, recently gaining his yellow belt, even if he does come home with bruises from the falls. He enjoyed an archery course, with his family aide guiding him,’ up a bit, left a little, fire’ and often achieving bullseyes. He enjoys quad biking, following the sound of the lead bike, swimming, snorkelling, kayaking and the gym, the only activity he would not do again is caving. (And I wouldn’t have done it in the first place).
In June this year James is embarking on his second tandem parachute jump, again to raise funds for the society, this time he wants raise funds towards the cost of the airfare and accommodation to bring Professor Lewis over next year and with the moths flying out of his wallet, is contributing £100.00 towards the cost of the jump. (So, if anyone else would like to sponsor him, all donations gratefully received.) He constantly looks for any activities that make his mother squirm and much to his disgust she has said NO with a capital N and 0 to bungee jumping.
He recently spent 4 days on Exmoor on an outward bound course, with a group of adults with learning disabilities and carers, he had an absolutely fantastic time, rock climbing, abseiling, canoeing, horse riding, zip wire and more, yes I was worried, especially when he said, ‘I will only ring home if I break a leg’, but who am I to stop him, ‘It’s all part of the ‘Letting Go Process’ and boy oh boy is it hard, but if he can accept his disabilities and limitations then so must I.
I could talk about James forever, I am so immensely proud of him, as I am of all my children, but James is and always will be special, a son to be proud of, overcoming so many obstacles in his life to become the person that he is today.
Chris gave me this thought from a recently diagnosed family: It’s a lot to take on board….but they are still the same kids that we loved yesterday, even if someone changes the label they want to put on them today’. How true this is.
I hope that one day James will stand here and tell you himself how he has coped and the enjoyment he gets out of life, but at the moment the lure of the theme park and hanging upside down on the rides takes precedence.
I will leave you with one of his favourite stories, as I have said he has a wry sense of humour, so I hope no one takes offence – ‘Dad, have you heard the one about the blind man and his guide dog doing a parachute jump. How did he know when he landed? – When the lead went slack!!! As I said a wry sense of humour.