Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


Adam

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Jack

Image: iin_incubator_medium.jpgJack was born at 32 weeks in December 1996, I was just 20 (my birthday is 10 days before Jacks) and I had no understanding of anything that was going to happen. In fact looking back, there are something's that I remember so clearly and others a complete blur, now whether that was because I was young and innocent and just went with the flow, I don't know. What I do know is that if that was my daughter who is now 7 I would not have been so calm.
Jack was born by caesarean section whilst I was under a general, because I was so ill and they needed to get him out quick. Thank god I was as Jack came out blue and got rushed to SCBU. When I first saw Jack the following day I didn't gush with love and in fact I remember looking at him and thinking oh god is that my baby? He is ugly and he has got red hair arhhhhh! Nightmare for a young mother!
I knew he was poorly, but I didn't really realise how poorly, I just thought he was born too early, give him a few weeks and he will be fine. My mum worked in SCBU at the time as well and therefore I suppose I knew he would be ok.
It was when he was a few days old when Graham Taylor his paediatric consultant explained that they were going to complete some chromosome blood tests because they thought he looked a bit odd and explained that he had a high palate, small bottom chin, kinks in his ears, wide nose and other cosmetic issues, I don't remember if they explained about any health issues but I'm sure they must have done. After a little while came the results, all chromosomes were as they should be, but the consultant wanted to do a specific test called the fish test. He remembered reading about a child who had been diagnosed and he remembers the facial features. The results came back positive.
I went home on day 5 and left Jack in the capable hands of the staff of Treliske Hospital and I went to stay with my mum. I went with her everyday to work and was able to learn how to do the caring 'thing' whilst my mum worked her shifts. Christmas Day came and went and life continued on. It was New Years Eve when the doctors said that Jack was making good progress and could go home in a few days time. They wanted me to stay in one of the rooms they had on the ward. Whether this was to check that I could cope with a young premature baby, who knows! I stayed with them for 48 hours and on 3rd January 1997 I was able to take my baby home.
It seemed that Jack had endless hospital appointments that first year and that he was always poorly. The first year, I didn't bond with Jack, I cared for him and did all the mum stuff, but I think I needed to keep a distance just in case he died on me. Obviously I didn't think this at the time, but looking back now, I know this was the case. You see, when Jack was 3 months old, he became very poorly, I took him to the GP and he said he was fine, 'take him home and let him rest'. I remember thinking ok, this is me being a paranoid mother, and Jack will be fine, so went home, put Jack in his moses basket in the living room and left him sleep. Thankfully, my mum popped in that afternoon and took one look at Jack and said he needs to be in hospital. I explained to mum what the doctor had said and she was not happy! She phoned the GPs and explained that she needed to see someone now, actually explained probably wasn't the right word, demanded was more like it. Anyway we saw a different doctor and like my mum he wanted Jack straight in hospital. He was going to phone for an ambulance, but mum said she would take us up there, it would probably be quicker.
An hour later I was sat there with Jack, nurse standing in front of me filling in all the paperwork when I looked down. I looked up at the nurse and said should he be this colour? Next thing I knew he was gone out of my arms. I sat there for what felt like an age on my own, wondering what the hell was happening and I started to cry. My mum had left by then to get me some clothes and stuff for Jack, so I was on my own, terrified. I remember sitting there, hearing all these alarms going off and nurses and doctors running. I think at that point I thought I had lost him. I remember getting up from the chair, numb, walking to the payphone and phoning my mum, what a phone call that must have been for her!
Back in Jacks room the nurse came to me, she explained that Jack had died, but they had managed to bring him round and at the moment he was on life support, just to help him breathe while he was fighting, whatever it was that he was fighting, turned out to be pneumonia and broncilitous. I went to go and see him and what I saw scared the poop out of me, there Jack was covered in wires and tubes everywhere. Jack was in hospital for two weeks, but I was so frightened that he was going to die on me, that I couldn't stay, I begged my mum to take me home and she did, that night I slept in her bed for the first time in years, Dad was on night shift so he didn't know anything about it.
When Jack left hospital life returned back to normal, more hospital appointments, more illnesses more temperatures, more of me panicking thinking he was going to die, more doctors appointments, health visitors appointment about his weight gain or lack of it etc etc.
I remember my mum getting given some information about the syndrome. There was no one else around that understood the syndrome or to explain what would be involved as Jack got older, but at that point with the paperwork in my hand, I decided I wanted to take Jack as he was, I didn't want to read what could happen, Jack was an original and therefore I would take it one day at a time. I told mum to keep it, but I didn't want to read it.
At 8 months, Jack suffered a major setback again. He was poorly, took him to the doctors, he had yet another chest infection. I took him home and we sat there having cuddles and watching TV having a nice mummy son time, when suddenly I heard a very strange sound, I looked at Jack and his eyes had rolled back and he had gone blue around his lips. I panicked, shock him a little, shouted at him and then suddenly something kicked in. I went back to my youth when I did my lifesaving and went into automatic pilot. After about 5 minutes, I realised he had pulse and therefore put him in the recovery position and rang for an ambulance. I knew I needed help. Once I knew the ambulance was on its way, I called my best friend and neighbour and just asked her to get over, I needed her help as well. When she came in I explained what had happened and that I was waiting for an ambulance. My mum phoned and my friend explained down the phone what had happened, again what a nice phone call!
The GP showed up, then the ambulance, then my poor mother. We spent another 2 weeks in hospital and again it was pneumonia, this time he was in an oxygen tent and I stayed with him, he was older and needed me more.
When Jack was coming up for his 1st birthday I was determined that we was going to have a big party, organised everything, which then got cancelled because he was poorly again.
By his first birthday, he was able to sit up, but he hadn't reached any other milestone. Others mentioned how it was odd, but I didn't care, it was Jack, he was my baby for longer. Jack went straight from sitting to doing this strange thing getting around, where he would lie on his back and push his legs, his head would end up right under his back, how he never broke it I shall never know!!! Anyway he never crawled but I caught him one day pulling himself up on the couch and the next thing he was walking. He started riding his bike at the age of 5 without stabilizers. He was fine with gross motor movements but struggled with his fine motor skills.
When Jack was nearly two years old I started college. I enrolled Jack in the nursery on the college grounds, but this was a nightmare, they didn't get Jack and his problems and I probably didn't explain them properly, because I didn't know myself. I persevered and completed my first year and decided to go onto do my Amspar course. It was when I was doing this course that we had to pick a subject to research and write about. This is when I decided to find out more about Sphrinzen Syndrome.
Unfortunately Jack became ill again and I missed too much of the course to continue, so I gave it up. But I got a job, found a child minder who was wonderful with Jack and even took him when he was poorly to help me out.
It was when Jack became 3 nearly 4, that he started at a child development centre. This place was amazing, they took notice of Jacks learning disabilities, his speech delays and all the other problems that Jack had. When the time came for him to go to school, it was decided by the professionals, that Jack should go to a special school. I was not happy about this. To me Jack wasn't that bad, I wanted him to progress, I had always treated Jack like a normal child and I was cross that others didn't. It was at this point that the fight kicked in for me. How dare someone tell me, his mother, what was best for my child. At that meeting I lost it for the first time since Jack was born and it felt brilliant. I got my way, Jack went to a mainstream school, but the school that was recommended to me, was awful. We had him moved before the October half term.
jack with sisterNow you will notice that throughout Jacks story so far, I have written 'I' and now I have started to use 'we'. I was a single parent, when Jack was born; his biological father was a waste of space and did a runner when I was pregnant. When Jack was 3 I met someone. He fell in love with me and Jack and was willing to look after Jack and fight for him as much as I did. For someone to do this when the child wasn't his biologically, I knew it was something special. Jack and Mark have a special bond and although Jack knows Mark isn't his biological dad, he calls him Dad and doesn't know any different. We have also had Lucie join our family, who is the bane of Jacks life, but they love each other, even though if you asked Jack, he would deny it. She has been a rock and has had to grow up fairly quickly. She is very protective of him and is also very proud of his achievements and will be there with me and their dad cheering him on.
That first year of school was horrendous, with the move from one junior school to another; Jack didn't cope very well, with all the changes he went back to babyhood. The new school persevered with him and he started to respond. We had his annual review in the March and we knew he had 25 hours a week one to one support, but this particular meeting was awful. Mark and I were there including Jacks teacher, TA and the head teacher, plus the so called professionals.
We were told, Jack would never talk and he would need computerised assistance for the rest of his life. He would never interact with others. He would never achieve anything. Never be academic. Blah blah blah. I came out of there totally shattered, crying my eyes out and just about ready to give up. I came home and saw my son and thought NO he is worth more than this and we will be fighting every step of the way.
Things started to turn when Mark and I got married, Jack was our pageboy and very handsome in his Cornish kilt. We decided that since we were going to go on honeymoon, we would make it a once in a lifetime trip and booked a 3 week holiday to Canada and Florida and we were going to be taking the boy with us.
Jack was so into Buzz lightyear and he got to meet him along with all the other characters, Jacks speech changed overnight literally! The school could not believe the difference in him. He wasn't perfect but there was a significant difference, he started coming out of his shell, he started making friends and no longer hid under the tables. Jack had a wonderful TA who was very patient with him, but didn't take any nonsense; the school sent her on different courses to learn makaton etc. Jack progressed well throughout his junior school years and this is when we started to notice Jacks passion for sport.
Jack tag rugbyWe are a big rugby family, so he automatically got enrolled. We are also a big swimming family and Jack was also enrolled in swimming lessons, he couldn't quite get the swimming thing though. Rugby on the other hand, he did brilliantly, he got trophies, he got player of the year and did really well, and he played for 6 years and even started playing in the half time matches on the Cornish Pirates games. When Jack was 10 he had furlow surgery and had to have quite a lot of time off from doing all sport, this is when he realised he didn't miss the rugby. He went back to finish the season but asked Mark if he could quit at the end of it. Mark managed to convince him to stay on for another year, which he did, but at the end of that year, he really had had enough.
Time went on and Jack moved onto Secondary school. This was a hard decision for us, as Jack went to a small village junior school where all the teachers know all the children and all the children know one another, so finding a secondary school where he wouldn't be lost really concerned me. We started by visiting all our local secondary schools and basically interviewed the school. My thinking was; you get extra funding for my child, what can you do for him? Will he get a one to one? What will happen when Jack gets older he is not able to do GCSEs? There was only one school that impressed us and that was Pool Business and Enterprise College and therefore we went for it. Special schools still weren't an option, but I did email one just for information and I was impressed.
When Jack left Troon Primary School I cried my eyes out, I was devastated that they weren't going to be in his life anymore protecting him the same as I did. This only got worse within the first 6 weeks of the transfer to secondary school. It was awful; it was the one point where I was very close about moving him to a special school. It felt like either Mark or I were in the school, falling out with them all the time. We had a home link book set up and the TAs wrote tittle tattle, which made me realise they had probably never read his file, if they had, why were they writing this sort of stuff? The one good thing the school had done was listen about Jack with his sport. They put him in the same form as the Head of PE. Once he had given up on the rugby he progressed to football. He started playing football for the school also joining in athletics, hockey and just about any sport he could do.
It was when Jack was in year 8 that his PE teachers started putting his name forward for playground to podium competitions. At these events he was having training by GB coaches. The coaches were looking for new talent to train up for the Paralympics. Jack tried out for every sport you could imagine from football, to wheelchair basket ball, from table tennis to 800 metre track events. These were great experiences for Jack; he got to know other children who had special needs. It was at one of these events that Jack got picked to try out for the South West Disability Athletic Championships in Exeter, he was representing his school, but if he did well enough he would represent the South West in the National Championships. Unfortunately Jack didn't get through and he was gutted, but he said to me, 'that's it I'm going to make sure I'm there next year'.
Image: rugby_presentation_2009_044_medium.jpgJack started year 9 and he was again put forward for everything. This time he was talent spotted for his football skills and his athletic skills. Jack was asked to try out by the English federation of sport for the Paralympics and at these events he had his name taken to attend future events. He also represented the school in the South West Disability Athletic Championships in Exeter again and this time he made it through to the Nationals. He is off to Blackpool on the 8th, 9th, 10th of July to represent the South West and he will be put up in the Hilton hotel, he can't wait and he is hoping he can have Prawn Cocktail and Pasta every day. Jack has also been noticed at a football event by the FA to have exceptional skills and they asked for him to try out for the England under 16s Disability Football Squad, Jacks Teacher saw the potential and trained with Jack every night after school until the day of the try outs arrived. If picked he would go to county, regional or national football training sessions. Unfortunately Jack became ill the day before, once again with a chest infection, but Jack was determined to play even if he was on deaths door, we managed to get 3 antibiotics into him before the event and I met him at the football tryouts with more tablets in my bag, I rattled as i walked! Jack was amazing even though he was ill and we have heard today that Jack has been selected to train for Cornwall at player development centres, which starts in October.
jack - school uniformJack is 14 now, 15 in December and he is fabulous. I love him so much that I can look back and see how bad I was. I now fight to the death for him and if I haven't got the strength, then look out cause Mark will. We are so proud of his achievements and so are the whole family especially his grandparents, he is getting rich just for doing well now, let alone if he comes home with gold medals!!!!