Daryl would take part in school plays and concerts and swimming galas. He also did horse riding from the school. But it got harder and harder to walk. When he was about 6 years old he had callipers fitted, these were iron rods fitted into his boots and had leather straps that you fastened around his legs. Which really kept his legs rigid to get him to stand and sort of walk by swinging his hips from side to side, he also used his rollator. As Jay got taller the harder it got to walk for long periods, and the physio tried her with some crutches, which did help and gave her more confidence. At this time the school suggested Jay would need to be statemented for educational needs. Up until then she had been managing as any other child would do, but now she was having keyboard lessons and the school wanted to do some adaptations for her then she would need a statement. We also needed to start to think about a mainstream secondary school because that is quite a difficult task with the schools in our area. We didn�t think that there would be a problem with Jay�s statement but it took a long time I suppose because she had managed previously without one.

When we went on day trips with Daryl we used a large buggy and one particular day trip out with his school to a museum, I had gone along to help out. A lot of the other children were in electric or manual wheelchairs and either pushing themselves around or going by power they were having a lot of fun investigating the exhibits on their own without having pushers or helpers. Daryl was looking at them with almost envy; he was frustrated he was a little boy struggling to walk at best only slowly. He wanted freedom to move about easily, quickly if he wanted to. We talked about a manual lightweight wheelchair and Daryl said he would like one. I thought it would upset me talking about wheelchairs, it would be like giving in, but it didn�t I suppose because it was the best thing for Daryl and when he took delivery of that bright blue quickie wheelchair his face showed his joy. We couldn�t keep up with him now, he was very good at handling it and very fast, too fast. He still had to use his callipers and rollator for periods during the day for a while, eventually it just got too hard and he gave up walking at around 7 years old. At last Jays statement was done and the school had the work done which made access easier. She was still falling over a lot and finding it increasingly tiring to walk any distance or stand for long. She fell over one time wearing her crutches and broke her arm. When Daryl had his manual chair she said she would like one just for long distances for when she gets tired. All her friends at school organised a spring fayre and raised money to help us buy her one. So now they both had manual wheelchairs. This was the start of our relationship with wheelchairs.
We took those chairs with us everywhere oh! Yes and the kids too. It just meant we could do more things we could cover larger distances and stay out longer. One problem was that having 2 children in manual wheelchairs you need 2 people to push. If my husband was working we might only be able to go where it was easy to push their-selves, like a shopping mall or museum. Occasionally if one of the kids had tired arms I would push one child and the child I was pushing would push the other child like in a tandem. This is when we decided to write to a charity that supplies electric wheelchairs. I asked them if we could have 1 electric wheelchair so that I could take them out on my own. They phoned me back to say they had 2 reconditioned electric wheelchairs that the children could have. A few months later they had in their possession 2 very fast electric wheelchairs and did we know it. Thank goodness by then we had built a large bungalow for us all to live in because believe me we needed it.
The following year Jay started secondary school still mainstream in our town. The educational authority had done some adaptations for her and she went off in her electric wheelchair with some friends and started her high school life. She was still doing some walking with some splints that she had started to use but one day after falling badly hurting her head it took away her confidence and she stopped walking at around 12 years old. The children have always been healthy and that I thank god for. It is easier to overcome problems when your family are well. Daryl tried a day a week at a mainstream school, but for some reason he never settled in to it. Maybe because he has always been in special school and not known anything else.

As it got nearer the time for Daryl to start secondary school we went to look around the special school high school we had a thorough inspection and they told us what they could do for Daryl and the holidays they go on and the youth club they have and also the sixth form site they have for later on in their education. Well we went home full of compliments about the school and telling Jay about some of the things that happen there. Jay said she would like to go and look around. I didn�t put her off this idea because I was a little disappointed by her current school. They hadn�t really tried to accommodate her on school trips and they don�t seem to understand her problems. She ended up in all the bottom sets. A big plus in the special schools is the heated swimming pools they have for hydrotherapy. Jay went to spend the day at the special school and met friends and liked the idea of holidays abroad with the school, and so in September she changed from mainstream to special high school. It is easier for her to get on; she has help when needed, but is encouraged to be independent. They work hard in their studies to enable them to get good results. Now that Jay is at special school, Daryl is much more relaxed about going up there next September. He has already been there a few times with Jay for various functions and he is ready for a change. They have both had holidays away from us this year with their schools, this makes you a nervous wreck and it�s very strange when one bedroom is empty, but I guess its part of growing up.

Once a year we have a check up with our consultant and she sees how everything is progressing and the last couple of times we have been she looks at their spines to see if they are straight. Well this time she said they were not very straight and we would need to see a back surgeon to look at their curve on both of their spines. We went to see the back surgeon and he said that they would both need to have spinal fusions and if he could it would be better for the family to do them in the same week because of travelling to and fro. A spinal fusion is having metal rods inserted down each side of your spine and in our children�s case into their hips as well. This is to keep them sitting upright and it helps to keep your breathing at its best. The date was set for January 2000 and we just had to hope their was spare beds available in intensive care, because the children would need to spend 1 or 2 nights in there after surgery. Well everything went according to plan Jay went in on Monday and Daryl on Thursday. We were all physically and mentally drained including the surgeon who said he would never do 2 in the same week again. Apparently Daryl is more expensive than Jay because he had a couple more extra bolts in than she did. They were in hospital 2 weeks and convalescing 6 weeks. The wounds healed very quickly considering the size of scar and don�t look too bad at all. It was a very traumatic time for us; we couldn�t help but worry and going through it twice in one week. We had just got Jay through surgery out of intensive care onto the ward and then Daryl went through it all. On top of that are the boring things like work and taking time off and employers understanding but not for long.
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