My name is Barry Gilbert, and I am extremely lucky to be the proud father of a beautiful little girl called Katy Melanie Jade Gilbert.
As you will hear later on, Kim (my wife) and I were not sure if we could have any more children after Katy, so we named her after half the family………
Katy was born on 23rd February 1989 which makes her 11 and a half. She is also just a little bit gorgeous, (but maybe I'm biased). I am here today to try to give you an overall view of what it is like to be a parent of a disabled child.
I say disabled and not handicapped because that is the way I feel. Handicapped to me implies that the child or person is unable to achieve. As you will see, this is certainly not the case with Katy.
I will also try to give you an overview of the difficulties we have encountered (and are still encountering) regarding what information is available (or not available), what help and support is out there, the bureaucracy that inhibits speedy action, general problems and the fact that I have had to fight many battles to gain what I feel is Katy's right to access the world, and maximise her own personal potential.
Katy has Cerebral Palsy. A loose term by anyone's standards. More specifically she is diagnosed as having Spastic Quadriplegia. She has poor muscle tone, which affects all four limbs to the same extent. However, mentally she is age appropriate, and in fact is a very clever girl, which will be proven to you in a few minutes.
So, how did Kim and I find out that Katy had Cerebral Palsy? AND How were we told.
Well, the first indication came from a Dr. Simms at St. Mary's Hospital here in Manchester. He wasn't happy with Katy's muscle tone, and hadn't been since she was 3 months old but he was reluctant to diagnose or even give a prognosis until she was 9 months old, (we were seeing him every 2 weeks at that stage).
Finally, mainly because I pushed him (not literally - that comes later with a Dr. Newton) he said it might be CP. We were both stunned and angry (Not at him I might add) We knew what CP was because of friends little boy called Adam.
We obviously wanted a 2nd opinion - (Dr. Simms agreed wholeheartedly) and we arranged to see this Dr. Newton at Pendlebury Hospital. Dr. Newton pulled no punches. He examined Katy for 30 seconds and then came right out with it and said 'Your daughter has Cerebral Palsy.
She has something called Spastic Quadriplegia and she will be disabled for the rest of her life'. Totally Numbed is an understatement. (It was Dr. Newton that copped for the pushing into a wall and my saying he is wrong, wrong, wrong. I just disappeared to the toilet, smoked 3 cigarettes, and went through about 2 ½ rolls of toilet paper using them as tissues before I went back into the room.…………..
Dr. Newton was brilliant after I returned. He was extremely patient and very sympathetic. And yes I did apologise. Dr. Newton said it was a perfectly normal reaction, and he had experienced it many times. Thank God for that………
He also added that experience had taught him this was the best way to inform parents, tell it as it is, as apposed to dithering and beating about the bush for ten minutes. This was hard but I had to agree afterwards that he was correct.
So now we had to learn about the implications of CP, what it meant to have a disabled child, and how it would change our lives? Kim and I had been trying for 3 years to have a baby .
At that time Kim had something called Osteovarian Disease. (worse than it sounds)
Basically, this means that as apposed to having 1 follicle in each ovary being stimulated once a month (producing eggs - which if not impregnated results in a period), Kim has several follicle's in each ovary which at that time were being stimulated ALL THE TIME.
Consequently, her natural period was about every 6 months. Now trying to hit the right few days every 6 months needs a miracle…….……..
We went to see a gynaecologist privately, a Dr. Lieberman who put Kim on fertility treatment. It might have been fun at first being told to make love at every opportunity, but believe me, timing when to have sex, looking at temperature charts, and leaving early from parties saying we must do IT now etc. was NOT EASY……..well, at first it was OK, but not after 3 years…………
After those 3 years of trying with no success, Dr. Lieberman said that the chance of Kim conceiving naturally was about 5%, and that she had to come off the treatment, and we were to just relax and take it easy. Oh! Yeh!!!! That was about 12 years ago. Now, being told to suddenly stop bonking like rabbits at every opportunity pleased Kim (I think she was pretty shattered by that time)….but gave me mixed feelings so…….what did I do?????
I decided to have my first heart attack, (the first of 7 plus a triple by-pass almost 10 years ago). I'm not sure if it was wanting a child so much that caused that first heart attack, or making love to Kim for so long………..Don't tell her I said that…..) Only kidding dolly…..!!!!! After the attack my doctors ordered me to relax and do nothing for 6 weeks. Yeah Right……
I was only 35 then, and it was my heart that threw a wobbly, not my libido. 3 weeks after the attack, Kim became pregnant. The date was 17th May 1988. It was weird. It was the date my grandmother died, and as we found at 3 hours later when my mother called to tell me about my grandma' it was almost the exact time as when Kim conceived Katy.
Whilst under fertility treatment, Kim and I had made many trips to St. Mary's thinking and hoping that this time the test would prove she might be pregnant, (but they all proved negative). On June 21st (another weird thing because that was my grandmother's birthday) and about one month after conception, we went once again to St. Mary's. This time it was positive. Kim was pregnant with Katy. What a day that was…… Her pregnancy was totally normal, but Katy went into distress during Kim's 36-hour labour maconium in Kim's waters - EXPLAIN.
Lot's of questions, (first time a dad - ignorant of procedures etc. I asked for a Caesarean Section, but was told it was not necessary. We did take legal advice and sued the hospital, but after a 3 year battle we were informed that although there were areas of mismanagement, causation could not be proved…..
OK Well, I have spoken about Katy for awhile, and other than these photos, you haven't even seen her yet so I am going to show a short 14-minute video of Katy (basically a synopsis of her life up to a few months ago).
I have called it 'A Flavour of Me' Zatak Productions is just a combination of Katy and Zacks names. (Ok I'm a budding and very jealous Spielberg and make no excuses for the sound effects). Zack is my 7-year-old son. He's great You'll see him later….and even from this distance probably hear him also - believe me….
Link to Vieo File (under constrction)
OK Let's recap. Katy is now 10 months old, has been diagnosed as Spastic Quadriplegic, and we now know that we have a disabled child.
What did we do then?
Well, after the tears and temper outbursts, Kim and I wanted to find out more. We contacted Physiotherapists, Occupational Therapists, Speech Therapists, Hospitals, Doctors, Scope, dozens of different organisations.
There followed many and various tests/scans/full body /brain scans/examinations/ more tests/x-rays, you name it. This was on my insistence. Then Physiotherapy at St. Mary's then at Fairfield in Bury. There were hearing/sight and co-ordination tests etc. Physical examinations by the score. I put that poor kid through everything, but never alone. I had nurses, doctors, matrons etc. tell me that Katy had to go alone for certain test/scans etc. Wanna bet!!!!!!Katy never went alone.
Oh yes, and we also discovered the Education Dept. That's when we found out about 'Statementing'. If you don't know what statementing is, let me try to enlighten you on this fascinating procedure. The Local Education Dept. issues a Statement of Special Educational Needs for a specific child.
Based on information gleaned from lots of professionals regarding the disability of that child a decision is made, in consultation with the parents and other therapists, re the educational requirements of that individual child. The decision is governed in the main, by the recommendations of the Educational Psychologist, who in turn is supposed to be guided by other professionals.
We were heading for Round 1 in a never ending fight….., but we didn't know that at the time. The meeting that we were called to was in a large room, 20 odd people, Doctors, Physiotherapists, Occupational Therapists, Speech Therapists etc., and the Ed Psyche. I'm not sure if all these people were there to help or just intimidate us….. Maybe that is unfair, but to the parents of a disabled child, who have no prior knowledge of disability, and who are nervous and perhaps a little frightened being with all these professionals, they could well be intimidated and may not want to, or feel able to contradict, or question what is being said about their child. Didn't bother me though…..
So, this Ed Psych read out Katy's statement which listed her needs educationally and recommended Fox Denton School in Chadderton. Now we had seen Fox Denton and although it was and is a good school we had also found out about another school. Lancasterian School in Didsbury. I expressed my preference for Lancasterian school based on our visit there, (Kim and I had gone down some weeks earlier after hearing about the school from another parent during a physio session at Fairfield Hospital).
I just felt Lancasterian School to have a better ethos, plus I felt that their resources were better structured to meeting the needs of the pupils, which included conductive education. Also the staff, the head teacher and just the way we were welcomed and received convinced us that this was the school for Katy. During the next 8 years we were proved right in our decision. So…During that meeting the Ed Psyche said that Fox Denton was adequate for Katy. WHAT???
Adequate DOES NOT apply to Katy. She is not a number she is a human being. This is what happened in the meeting. Relate incident re schools and Ed Psyche. Katy went to Lancasterian. I had written letter. Went round the table. It is that little something called parental choice Initially, we had to find out for ourselves all the information that we needed to know about regarding education, help, assistance, support etc.
This was about 10 years ago, and things have improved somewhat, but we had to source all the facts for ourselves. It wasn't that people were not helpful, at that time they were just not aware of what was available. I wanted to know just what was Cerebral Palsy. What was Spastic Quadraplegia. The only experience I had had of the word Spastic was in a cruel way at school, and even then no-one really knew what it meant. So it was visits to the library, encyclopaedias, schools, hospitals etc. 3 or 4 phone calls soon grew into 10 then 20 , and then escalated into many dozens.
Our phone bill tripled……The internet wasn't around then, or at least not in the format that we know now. After a while, I knew all about Spastic Cerebral Palsy, Ataxic Cerebral Palsy Athatoid Cerebral Palsy, paraplegia, quadriplegia, muscle tone, dispraxia, and a host of other terms relating to basically what is an injury to the brain. I became an expert on the disability that was affecting my daughter. CP and all its manifestations is basically a short circuit within the brain.
As an electrical engineer I can understand that, but I still wanted to know more. I wanted to know how Katy felt inside, what she felt when she moved (or tried to move) what her body was feeling, stresses, strains, etc. I learned this technique to experience some of her difficulties. Let me pass on this knowledge to you. Feel for a few seconds how Katy feels when she commands her body to move. Don't worry it's not dangerous.
Give example of touching nose.
So, I was slowly learning what it might feel like if your body wanted to do something, but you're brain said NO IT CANNOT. During this time, of course, we were attending various child-development centres throughout Manchester. We dealt mainly with St. Mary's and Fairfield Hospital in Bury. Both of these centres were then, and are now, excellent.
We still attend Fairfield Hospital child-development centre once a year, and apart from our scheduled appointment time usually being about 45 minutes late, generally speaking I think it is worthwhile to have Katy's developmental progress monitored on a regular basis from an independent party. Dr. Bose there is extremely efficient and just happens to love Katy (but then who doesn't…………..)
Our needs as a family also had to be considered. Initially, looking after Katy was much the same as looking after any new baby. However, as she grew, so did our realisation that we had a child that was disabled who could not achieve things as easily as other children might. But Katy was not handicapped. At no time were we prepared to accept that Katy was handicapped. We knew that Katy had physical problems, and that she had poor gross and fine motor skills but that didn't mean that she (and we) couldn't and shouldn't try. We treat Katy as a totally normal little girl, but with a problem.
Unfortunately some other members of my family just see a disabled and in their eyes handicapped child. You have seen that she is a very happy child, and we strive to maintain that. We are trying to give Katy the best quality of life that she can achieve. At 2 ½ years Katy started at Lancasterian School in the integrated nursery. She progressed through the years, and completed her schooling at Lancasterian in July last year. Katy integrated into mainstream school last September, but I am jumping ahead, I will return to this very exciting point in a few minutes.
During the first 12 months of Katy attendance at Lancasterian we had some help from Portage via Social Services. This is a form of help and support but minimal in its effect. Apart from this support, we as a family had little assistance from any quarter, either financially or socially at that time. This was a very difficult period for Kim and I, and put tremendous strains on us. It is an unfortunate fact that around 30% of parents who have a disabled child, fail in their marriages. I find myself very lucky in having a wife like Kim, who not only supports me (although God alone knows why….), but also cares for Katy extremely well. If anything, and if it were possible, Katy's disability has brought Kim and I closer together. True love huh!!!!!! When Katy was 3 ½ years old we went to the Bobath Centre in London.
This is one more specialised form of therapy, but I am sure you all know that…You may also have heard of Mo Down (a physiotherapist who left Lancasterian School about 3 years ago after 18 years). Mo was fantastic both as a friend and a physiotherapist. She met us in London and stayed with us during Katy's assessment. The outcome of this visit to Bobath was beneficial in that it gave us another perspective on disability and available therapy. It also gave us more insight into Katy's needs, her potential, and what we could possibly expect of her in the future.
You may also have heard of Sue Hunter. She was also brilliant. Sue also came with us to Oswestry when we were evaluating another walking device there. This is the level of support, help and information that the staff at Lancasterian gave us over the years. It has been second to none. I must mention one other person from Lancasterian. It fact she only retired last year and her name is Barbara Duncan. Barbara was Katy's first physiotherapist, and her depth of knowledge and help have proved invaluable over the years. Barbara also proved a true friend over 8 years. Thanks indeed to all three of them.
I was involved with Lancasterian school for many years ( 8 in all) as parent, Parent Governor and then Chair of Governors. However, after 8 years and recurring heart problems I felt that it was time to retire and give someone else a chance to mess things up. I have to say though, that the help, support and friendship that we received, we received as parents of a pupil and not because of my involvement.
This support is uniform throughout the school to all parents. This was one of the reasons why we chose Lancasterian School in the first place. Notwithstanding the fact that the head teacher, Roger Billinge, is one of the most genuine and dedicated men I have ever met. We retain a friendship to this day, and no amount of thanks to him can ever be enough, not only for his direct support and advice to Kim and I through the years, but his absolute commitment to inclusion and enabling the potential of all his pupils.
At school and at hospital Katy has received all different forms of therapy. One form of therapy that I kept hearing about was called Conductive Education. Has anyone heard of this??? 'Course you have…' Well then, you know that it is a very intense form of therapy.
The Peto Institute in Budapest, Hungary is where this form of therapy originated from and the institute there specialises in Conductive Education. We decided to go for a 2-month intensive course back in January 1993. Katy was almost 4 years old, and Kim was heavily pregnant with our son Zack. Apart from the cost of the Peto trip (almost £4,000) these 2 months proved to be the most exhausting and debilitating time for all of us.
We had set up a trust fund called 'The Katy Gilbert Trust Fund' a year before specifically to raise money for such contingencies. The fund is still live although no fund-raising events have taken place for several years, and there is very little money in the account at present. The Peto Institute itself is fantastic, and the people who work there are brilliant and very dedicated. The gruelling regime is from 8-30am until 1-00pm 5 days a week. Apart from a 10-minute break for the kids, there is no respite for the parents. Kim and I took turns staying and helping with Katy during this extensive and intensive therapy. Budapest is a beautiful city, but the level of pollution is incredible. Katy came down with Bronchitis after 2 days, and we were all ill for most of the time.
The benefits to Katy??? Well thankfully, the level of therapy that Katy received at Lancasterian at that time was first class (daily physiotherapy, daily occupational therapy, speech therapy twice a week, and hydrotherapy once a week.) ANOTHER REASON WHY WE CHOSE LANCASTERIAN.
This input of therapy is or was unheard of in other parts of the UK back in '93. So if a child only had physio once every 3 months for an hour, and suddenly had an input of intense therapy for 25 hours a week, the benefits to that child were obvious. However, with Katy because of the level of therapy she was receiving daily in the UK, the benefit was minimal.
The trip was worthwhile in some respects, although we felt it was not that beneficial to Katy to justify returning and spending another £4,000. Two weeks after returning home from Hungary in March 1993, Kim's father Syd took ill. He had developed cancer and died 6 weeks later. Zack was born 3 weeks after the funeral. This was a very cruel and stressful time for all the family. Kim's father idolised Katy and she him. Katy misses him even now and still talks about him after all these years.
In 1993 Katy was trying out various different types of aids at school. 'K' Walkers, standing frames, varying seating, and support devices.
At home we had bought a Jenx Chair (£400) for Katy (show picture) when she was about 3 years old, and she used this chair very successfully for 3 years. She then went on to use a trip-trap chair for eating at the table with us. This was also successful and in daily use until Katy received her Powertec Electric Wheelchair for her 7th birthday on February 23rd 1996.
About this time we heard of something called the David Hart Walker (You saw Katy in action in this device doing the shopping in the film). If you haven't heard of the David Hart Walker, it is an orthotic device. It's like an exo-skeleton, which a child is fitted into and then that orthosis in turn is hooked onto a square frame with wheels mounted at each corner. It is fantastic (and so is the price now over £3,000 including 1 year's aftercare).
Katy used this regularly for a couple of years although less so now as she is growing out of it, and it benefited her in many ways such as improving posture, muscle control, and even bowel function. Katy also received her first 3-wheeled bicycle about this time (SupaBike from WRK). She used this bike until getting her new one about 3 years ago and rides all over with us on a regular basis. She can ride for hours at a time, and competes in races with her brother Zack outside our home.
As I mentioned before, Katy received her Poweteck electric wheelchair (£2,500) in February 1996. A company called Hoskins here in Manchester raised the funds through Whizz Kidz which is a charity specifically set up to provide mobility aids for disabled children. This electric wheelchair was a major addition to the enormous amount of special needs equipment we have for Katy. It gave her freedom, independence and the ability to create havoc in shops when she wants to go 1 way, and the rest of us another. Great fun for us, not sure about the other shoppers though…..
This was Katy's first electric wheelchair. In September 1999 Katy took delivery of her new super duper Spectra electric wheelchair. Personalised for Katy and again funded by Whizz Kidz and supplied by The Helpful Hand, this chair is fantastic. Dual control and as I said personalised for Katy. The seat (made to measure in America cost £1,500) The chair was just under £3,500. So together the cost was almost £5,000. A little ridiculous don't you think, but there again anything special needs is way over priced…….
In September 1995 our home had a major extension and adaptation to enable Katy to have access throughout the house. This was Round 2 (or rather round 22). This was a seriously major fight, which lasted over 18 months. Social Services disability section were insisting on a ground floor extension as we have a large garden. I was insisting on a 2-floor extension with a lift. I think they got a bit peeved that I designed the extension myself, rather than use one of their (this is what we usually do) buildings.
Katy was only 6 years old at the time when the extension was built (4 when we applied for permission), and it may have not have been a problem (at that time) to walk through Katy's bedroom to get to the garden had a ground-floor extension been built. It may not have been a problem even when she grew to 9 or 10. BUT (thinking ahead as you have to do) I was not prepared to have people walking through Katy's bedroom, and listening to her on the toilet etc. when she grows into a teenager. It is a small (or rather large) thing called privacy.
During the summer months we treat the garden as another room in the house and virtually live there (weather permitting of course…..). The sentence in one of their letters that caused me to strengthen my resolve to insist on a 2-storey extension stated VERBATUM "It's OK, these children learn that they are different and can't have the same things as the rest of us" Wanna Bet……Yes I did nearly hit the bloke………….
It was a prolonged and time-consuming fight. But guess who won?? I cannot help being the person I am. Katy is very special to us, and as I said before all I want is for her to achieve and succeed to her maximum potential. Independence and privacy is demanded by 'normal' individuals' why should Katy or any disabled child or adult be any different? So a 2-storey extension was built (it took 3 months and tripped yet another heart attack, plus pneumonia- well, I'd not had that before……)
A Lift was installed in the extension leading directly to Katy's own en suite…bathroom and bedroom. This is absolutely brilliant. Katy now opens the lift door herself, uses her electric w/chair to reverse into the lift, and takes herself up to the bathroom or to bed. One of us then races up the stairs to meet her at the other end. If we didn't I think Katy would try to find out if her w/chair can slide down the stairs. Not a good idea. I have installed a full-sized see-through lockable door at the top of the stairs purely for this reason. Total independence - and safe….brilliant… Prior to this adaptation, we had many problems lifting Katy.
Although she is not a large child, it is still easier to lift and carry a 'regular' 12-year-old than Katy. It is only recently that she has been able to support herself to any extent whilst being carried. Before that she would just arch her back and go into extension, which created balance problems for the person carrying her. Kim is only 5 foot nothing and both of us have now developed back problems as a result of lifting Katy. Kim also receives physiotherapy for RSI to her arms and shoulders. All of Katy's personal needs have to be met.
She has to be fed, showered, clothed and toileted, although she does try herself with dressing and feeding. At 9, 10 and 11 years old, it is not a problem for daddy to help with her personal care, but in 2 or 3 years when puberty comes upon and she is already on the way, it will all fall on Kim. That is going to be very hard for her. Support-wise we have been very fortunate, and today we get are very lucky to have some help each weekday from both Crossroads and The Manchester Jewish Federation. Some of you may have heard of Crossroads. They have been fantastic.
We receive 4 hours support from them from 4-30pm to 6-30pm twice a week. June who is Katy's regular carer from Crossroads is a total nutcase. She idolises Katy and Zack, and over the last 7 years has become like a member of the family. She helps us in so many ways. The Manchester Jewish Federation also offers us support with 'Project Smile'. They provide carers from 4-30pm to 6-30pm/8-30pm 3 days a week. Lucy and Zoe are the regulars, and they too are also brilliant. They really are excellent, and help with showering, feeding and trying to give Kim and I a little bit of space to ourselves, although with 7 year old Zack around, that rarely happens. They also baby-sit for us (we can only leave Katy with certain people), and they too have become family friends.
In fact Lucy got married a few weeks ago, and we were all invited to the wedding. Good huh! Up until about 3 years ago, we were also involved in the 'Home from Home' respite care scheme. Our link family in Brandelsholme near Bury were fantastic, and the link worked well for over 2 years. Needs change and one day whilst I was taking Katy to their home one Sunday, she decided she didn't need their family any more. She couldn't explain why, she just didn't want to go. She had stayed with this family regularly for over 2 years, played with their children and loved them.
The only explanation we came up with was that their daughter was 2 years older than Katy, and now 2 years into the scheme, had met new friends. Maybe Katy sensed that she was not the centre of attention any more. She can be very possessive. Whatever the reason, we respected Katy's wishes. Just for your information, the parents had been totally vetted prior to my accepting the link, and also on my insistence that only the mother took care of Katy's personal needs. I haven't really spoken about Zack have I? Zack is 7 years old, and is an incredible boy. (This is a picture of the 2 of them)
He and Katy idolise each other and even at his age he is very protective of her. If Zack and I are out together and I buy him some sweets or whatever, his immediate reaction is 'and Katy'. The same thing happens if I'm out with Katy. They have to check that each one of them is OK before they'll relax or go to bed. It really is incredible to see. Don't get me wrong, they argue at times like all brothers and sisters, but he is a very caring little boy.
If he matures into the sort of person that his character indicates he might, he will be a great asset to Katy and a friend for life. He is tremendous fun to be with, and a very funny little boy. He's great. However, he will have to go through his own problems later on, of coming to terms with the fact of having a disabled sister. Hard words and hard facts.
Socially Katy interacts with other children and adults very well. She works hard at her schoolwork and is a very determined little girl. Katy was a full Brownie for almost 3 years, and last year became a 'seconder' (helps a new member).
She goes to cookery classes once a week in the winter, and took part in an integrated youth group almost every Sunday afternoon until it closed some months ago. She plays Boccia (a form of bowls) and takes part in the Regional Championships each year.
She has won several medals at various tournaments. Katy was in the wheelchair dancing team at school. She has taken part in several events over the years, one year taking part in a 2-day event at the Regional Championships in Watford. Katy also helps me at times.
I work closely with Whizz Kidz, and have regularly helped other schools raise funds for other children's mobility aids. Katy usually accompanies me to these events, and lets the other kids have a go in her wheelchair, or on her bike. At one event at Manchester Prep School, together we encouraged the children of that school to raise £1,500 for a boy's new wheelchair. She is fantastic.
We also travel to various Seminars up and down the country, visiting centres and universities and sometimes she even accompanies me to events like this one. Sorry she couldn't make it today. We regularly go to a 2-day AAC Symposium at Lancaster University, where we, Katy included, involve ourselves in several workshops, contributing to the day's events. She also fell in love with Paul (show pictures)- one of the helpers/carers.
They have exchanged several letters, although as he is now engaged Katy has reduced the frequency of her letters……. One thing I have not mentioned yet, and deliberately so. I have left it till now because it is a fundamental item in Katy's ongoing and future development and progress, and that is her communication aid. Katy has used various forms of communication aids over the last 8 years or so.
She now uses 3 different types, each individual in their own right. 1/ Bliss Symbols. Katy has been using Bliss for a long time now, and very successfully. Some years ago in consultation with Katy's speech therapists, I devised a menu system for Katy to use. This enabled easier and faster access to the relevant pages she needed to use.
She continues to use this communication aid both at home and at school, although to a lesser degree than before. 2/ Computers Katy started out using a BBC computer when she was in nursery. She now uses an Acorn laptop computer at school and an Acorn 4000 and PC at home. I wanted to mirror Katy's provision at school with the same at home, so initially Katy also used a BBC at home using the same programmes as at school. This was successful, and helped her schoolwork tremendously.
As she progressed to an Acorn so did I. As building and configuring P.C's is one of the things I do, I built Katy a PC, which she uses very successfully at home. I initially enabled a simple speech programme, which allows her to speak whatever she has written, although if any of you know about Windows '95/98, the disability options are brilliant, and this caters for her needs, even to the point of mouse to keyboard emulation.
She now mainly uses the PC to do her homework on, Brownie speeches, (you heard her Brownie promise before on the film) and sometimes if Dad allows, to play games on. She still sometimes uses the Acorn if her schoolwork is programme specific.
She has a dedicated joystick mouse for the Acorn (£200 - tell me about it)) Some years ago Zack started to fight with Katy over whose turn it was to play on the computer (I wasn't letting him anywhere near mine…..), so I ended up building one for him as well. No wonder I'm skint……. 3/ Delta Talker This device has had the most significant impact on her communication development. Again via Lancasterian, Katy's teachers, Janice Murray, Kath Newton (Katy's Speech Therapists), and others, and the ACE Assessment Centre in Oldham have been fantastic in helping, advising and supplying the Delta Talker.
You saw Katy using the Delta Talker at the beginning of the video. For those of you who don't know about AAC (Augmentative and Alternative Communication), the Delta Talker is a voice output computer. A little larger than an A4 piece of paper, it is based on a language called MINSPEAK devised by a genius called Professor Bruce Baker. I am not going to enlarge upon minspeak mainly because it is very complex and I don't fully understand it…..ish…… but Katy's Delta Talker is rapidly changing her life.
It has enabled her to go up to people in her w/chair and instigate conversation. · It has given her the freedom to reply, and to say NO. · It has also given her the ability to say "Shut up Zack" and "Don't shout Mummy, I'm not deaf" when Kim (with a slightly raised voice) says "Come on Katy finish your homework". · It is brilliant. I have a copy of the 128 symbols Katy uses. (show picture) This set of Icons is called Language, Learning and Living (LLL for short). There is logic in the sequences, but don't hold your breath while looking for this logic.
I was unable to bring the Delta Talker with me as Katy uses it every day in school. She does, of course bring it back home with her each night. She knows hundreds of words and phrases, and uses them to great effect, believe me. If she doesn't know or remember a particular icon sequence, then she can go into spell mode and spell the word. So, where do we go from here, and what does the future hold for Katy and us as a family. Great things…….we hope.
Three years ago our hopes were based on looking forward to Katy finishing her school years at Lancasterian and then hopefully, if she were able, to go on to college.. Kath Clarke (one of Katy's teachers at that time -bless her) approached us to see how we felt about Katy moving into mainstream education. Prior to us being approached on how we felt about integration as far as Kim and I were concerned at that time, this was not even remotely on our agenda for Katy's future..
Well, after using another 2 ½ rolls of toilet paper and a box and a half of tissues, we sat and thought it through. Not an easy decision. At that time Katy was and had been in a protected environment at Lancasterian School for almost 6 years. All her needs were met, curriculum, therapy, medical etc., did we want her to go into a strange school?, very few children like herself, possible ridicule, name-calling etc. did we want to expose our daughter to that sort of environment?
Kim and I talked of nothing else for days. The conclusions we reached we these.
Many other factors were taken into account, but after having weighed up all the pros and cons we decided that in the long term it would be beneficial to Katy if she could access a mainstream environment.
Consequently, Kim and I visited three schools that were suggested to us, and we chose one, Charlestown, the school Katy now attends. However, we were then and still are now realistic enough to realise that if Katy's teachers and therapists feel that Katy is not coping as she should, then so be it and she could return to Lancasterian.
However, Katy has now been attending Charlestown for over a year now, and apart from an initial hiccup when she was upset because she was missing her friends at Lancasterian, has settled in extremely well. She is working very hard and achieving results comparable to the rest of the class, and sometimes better.
She gets 10 out of 10 in her weekly spelling tests, writes some fabulous stories, and has made some very close friends, one of whom has visited Katy several times and even had a sleepover. She is not over keen on maths, but what 11 year old is……….
As I mentioned before, Katy is a very determined little girl (not so little any more) and she will achieve whatever she wants to. That is really all we want for her, and all we have ever wanted. For her to maximise her potential, and go and get whatever she wants in life and be happy. And she is a very happy child. As I continually tell her, 'Katy, you can do whatever you want to do', So long as she has that confidence in her own abilities, hopefully she will be assured of a good quality of life.