Is there anything else that really concerns you about the future?

Jane Concerns us. Concerns me especially about what will happen to [name] when we die. It’s quite morbid to think about but it does, it does really concern me. It does worry me, because even though he is little now, you still think about it, because with my other child, I know that I am teaching her now and she is going to be able to take care of herself, and she is going to be able to work and have children and get married and things like that. But he is not going to have those options open and you know, we already know that he is going to need some great deal of care throughout his life. So it does sort of worry me because I don’t want him to end up in an institution. I want him to be happy and feel like he can live independently when we do pass away. That worries me.
Dan’ Hm [laughs]. I feel confident and I am convinced that he will be able to take care of himself to some extent, at least to manage, because the values and quality of life available to him now, I reckon, that will help. I mean he may not be able to help himself totally compared to our daughter, but he will be able to do it to a sufficient extent and I imagine having my daughter around, she would also help him because they are very close. They are almost like twins I would say, you know, and she always asks about him, even when he is asleep in bed, when she is up and he is in bed, she always says, ‘oh I want to go and see [name] and she will get up and go to his room and have a look at him and make sure he is tucked in and all that stuff. So I am confident that even if we are not around she is going to be able to help in some way or other. And like I said the, the values we are teaching him now, will help [name] with characteristic for the future. So I am a bit more optimistic [laughs] about his future.

Is this something you have discussed between you or not?

Jane Oh we tend to argue about it when we discuss it [both laugh]. We do. And I know that I have to be more optimistic about it. It is just very hard. When you get a piece of paper and you write down all his difficulties, it is really hard to look over that and see the rainbow at the other end, and see the pot of gold at the other end, and think, yes he can get there, because you see, he has so much pulling him back. It doesn’t mean that I don’t want it to happen. It is to me, sometimes, I think more realistically [both laugh].
Dan’ Not necessarily more realistically it is just that you have read into things more then I do, so I try not to get too much dive head first and put my foot in it, feel the water [both laugh]. It is like I said if you read too much about it it takes you to that stage doesn’t it?
Jane Yes. I think that is really true.

You say your family, some of your family, find it difficult. What has it been like with friends and family when you have told them?

Jane In the beginning it was sort of like, “Oh there is nothing with him. You are just worrying too much. He is just a normal little boy. Don’t worry, that is normal for a child to do that. They all do that.” But… and that feels like you want to scream at them sometimes, because I have had a normal functioning child and they don’t do that, you know, they don’t pull the freezer out, and you know, want to pull it out constantly and run all over the floor with frozen food. Neurotypical children don’t always want to do that and they don’t want to open and shut the doors fifty times in one day [laughs]. And so it does feel frustrating, but as they got to know [name], and as I have been able to explain more about the condition and I have learnt more about the condition, then I can explain why he is doing certain things. Then they have sort of said okay. But some, some family members don’t like the acceptance of accepting it and you know they just want to think of him as normal. And I think you know, that is okay, because it is very hard to come to terms with the fact that he is not, and we as parents have had to do that but not everybody has to take that journey.

What about your family?

Dan’ Well from my perspective, my family perspective its it is more for being educated and learning more, especially where we are from in terms of the Caribbean, because it’s trying to understanding first of all what autism is, …what’s.. what is the condition and then basically how a kid with autism acts and stuff like that, because it is not so much of being in denial, but more of having a discipline perspective in terms of the way a kid is growing up. It is usually perceived as being autistic or anything is wrong with the kid, most of the time it is just seen as the kid being naughty and what have you. And it is just since myself and other relatives have moved away from the Caribbean to North America, to England, to different parts of the world, we have come to terms and learnt more and understand more and are more compassionate I would say to the term autism.

Dan’ And maybe here having a child with autism, my cousin who lives in New York having a child with autism it is more compromising on the part of our family. One for them to know what it means to have a child with autism and actually have them trying to help or trying to sympathise to an extent and sympathise, you know, so that is a sense of relief. It is not so much of a denial it is more for an embracing and just trying to make the best of the situation.

Jane He likes going swimming. He absolutely loves going swimming. He likes taking the dog for a walk in the park. He likes holding the lead and he likes to try and command the dog [laughs]. He loves the swings. Loves the play park. So just being outside and being normal, having his wellies on, running in the mud.
Jane He absolutely loves to be outside. He likes running up and down a big hill with his little toy truck constantly for like three or four hours at a time wearing himself out [laughs]. It is very funny to watch. …I think that is what he likes.
Dan’ Yes just being outdoors and I would say going places, because even when you are driving to where ever it is and what have you, he is just enjoying and looking out the window and just seeing everything passing by and when we are getting to the zoo, because he just loves seeing the animals because when we went to the safari, we went to the safari…
Jane Yes. He loves animals. He is like amazed by them. When we took him to Knowlsley Safari Park and we had a monkey on the car and he thought it was the most funniest thing ever [laughs]. He likes playing with his sister. He has got a very, very close and loving relationship with his sister. He really loves her and like gives her hugs. And he loves Dora the Explorer. Barney. Pepper Pig. Can’t understand why everything in Dora is pink and he can’t have anything. He loves dressing up in [name]s clothes. He has no concept of girl and boy so he loves being a pretty princess or a builder. He is just your average three year old I think.

Jane In January sure I had to give up work because of [name]’s appointment and to care for [name] was getting more and more difficult. So I gave up work and became [name]’s full time carer for ten months, which was really hard, because sometimes five times a week we were seeing, we were going to different hospitals and different appointments and we had to see different people, and he had to do different assessments and blood tests and it was really stressful that period, because it just felt like sort of time when you meet professional people you feel that everybody… you have to repeat yourself over and over again and everybody wants a piece of him, and they are all talking about him, but they don’t really know him, and I have found that sometimes really difficult, but the people who we work with on a long time bases, the portage work that comes to help, the speech therapist, they have got to know us as a family and it is really nice as well, that they have come on the journey with us, because they have really sort of helped us, helped me, and helped [name] in terms of our home life and getting [name], getting us ready for school and getting [name] trying to communicate and giving us advice on the best sort of possible things.

Jane But I am finding, I find that anything that [name] needs in terms of like nappies because he is still incontinent or Disability Living Allowance, everything is a weight on your shoulder because the services are so short. We don’t… we have only just started having respite care now and he is three and a half and it is a real sort of struggle. That has been a real challenge because we are with him 24 hours a day, 24/7, we care for him 24/7 and some days he will just not let up. From six oclock he is up in the morning until seven oclock at night, he is up and he is around the house, and he has no sense of danger, and a very, very low pain threshold. So at any minute he can do something and you have got to sort of stop him and tell him or he can have an accident and he won’t tell you. So there is always something sort of in the day that will prove challenging with him.

Have you been involved in any support groups or anything like that ?

Jane Yes. I am quite actively involved. And at first I joined our local support group and it has got over a hundred members and I met quite a few people through there, good friends through there that have really helped me and explained things. But I have taken, from that support group I have joined up with three other groups and we are campaigning for services locally to be improved. And I really like that aspect of it because … something positive has come out of it. It is something positive that I can do. I don’t, we don’t sit around moaning about our childs condition, what they can do, we do something really positive to improve the chances they have in life through education, so we are really quite, we are funded by DFES and Treehouse, so we get together once a month and we discuss things and we have different professional people come to the meetings and we are hoping to fund our own research in [town] regarding children with autism, and it feels really empowering, because I am actually doing something good out of it. It feels really good.

Do you get involved in any support groups?

Dan’ No. I leave it to the captain here. Full speed ahead.

So what would you do if you are out with him and he has a tantrum. Do you explain to people?

Jane It very much depends on the situation where he is, but in the doctor’s surgery that seems to be the best place he likes to have a tantrum because he doesn’t like to sit and wait. He doesn’t do waiting very well, because he doesn’t understand the concept of waiting and what he is waiting for because he is three and a half now, but he has a development language age of fourteen months. So when he is having a tantrum and other people are lined up in the – I have to hold and physically pin him down, because there is no space for him to tant in a safe environment, and I just generally whisper to the person next to me that he is autistic [laughs], because there is nothing else I can do. You know people do look, and they do have a good stare, and I just think I hope this really doesn’t happen to you, because you do feel mortified.

I mean sometimes you are really close to tears and you just want to get up and walk out, but he is not going to learn anything by that so we just have to sort of hang on in there. And one time he was crying, I had to pick my Mum and Dad up from the airport and the flight was delayed and he cried for three hours in the airport and I didn’t have a buggy with me. I usually have, we usually have a disabled buggy for him. And he was kicking, and he was screaming and he was pulling hair, and I just had to hold onto him and just wait because that is all I could do. It is funny looking back on it, but it isn’t so funny at the time [laughs].

Jane Eating is a bit more technical because he takes a long time to eat anything and he is very sort of slow. And you have to pre-empt what he is going to eat so he could actually eat something because he doesn’t like certain things, and for one period of time all he would eat was Weetabix [laughs] with milk. And he had Weetabix for breakfast, dinner and lunch, but now he has a little bit more of a varied diet and he loves fruit, he loves raisins, he also loves sweeties, but we try and tell him that he can have some sweeties later, when we are out anywhere, although he will kick off won’t he if he can’t have sweeties right now and there. So he is getting better, but there is concerns about his weight and his height and not growing.

So … but he is very messy still. Very much like a bit of a food fight. If he has had beans for breakfast, you will know, it is all down his top and he does like you to feed him. So he is sometimes like a baby and he likes you to cut it up and feed it into him, because he gets fed up I think of trying to eat, and it is so slow and everybody else has got up and left and he gets a bit frustrated by that. So I do feed him. And he does… we started off with finger foods at first to get him to eat. And then we went on to just what we eat.
Dan’ Mash and all that.
Jane Yes.

Jane Well it is really sort of frustrating because when we got the diagnosis and you start to read everything. When you start to read on the internet and you start to read all the books, it is really upsetting, because you think I don’t want my child to be like this. I don’t want my child to have this stigma attached and you feel very frustrated. And there are times now when I feel very frustrated and very upset because even though we want him to live a regular life, we know that he can’t. When people stop and stare in the street or he is having a tantrum and everybody is looking at you thinking, “Can’t you control that child?” and you just, you get really upset because it is not his fault that he is being like that.

And not a lot of people understand what autism is. If you explain to them, they do understand but it takes a lot of explanation and when you are very tired and you are coping with a child like he is, you do get very fraught and your emotions… and so sometimes you just can’t be bothered to [laughter in voice] tell everybody and you just think let them think it is a naughty child or….