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Charlie
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How would you describe Charlie to me?
Oh he is very funny. He has got an unbelievable sense of humour. He really is quite funny. He likes trying to make himself laugh. He likes to make other people laugh. If he can make you laugh then you know he has scored one. He is very much into his Sponge Bob. He is very much into planes right now, it used to be cars, now it is planes. So very animated and because he is very flexible because of the … as well, he is incredibly animated. He will dance. He is constantly on the move. I mean even if he is sitting there tired watching TV he is still moving something. He is very much into his numbers.
He loves his big brother to the point where we are trying to separate them. I mean for years they have been sleeping in a double bed. I have got bunk beds. I have got bunk beds. The bottom bed is slightly larger. At one point Charlie got into the bottom with Jack and from that point it has never gone. They are still together. Now Jack is like sort of pressed against the wall at eight years old going okay I have had enough of my brother. And Charlie, we’ll get him into the top and then in the morning some how he is down the bottom again. So we are working on it. We are getting there.
But I mean he adores his big brother. He adores his father. He is very much a boy. And he is going through things right now where he likes fairy wands and he likes crowns but also tiara type things. But they are girl things now mummy so you know, I am not really supposed to like them. Well as far as I am concerned honey you can like what want. You know. This is a child that was painting my toe nails when he was four years old. You know, and painting his arms, as far as I am concerned you’re a kid, what ever you want to do. If you want… so he has been buying me fairy wands now which I have to hold me my room, but you know let me borrow every once in a while. He is funny because that is when the Asperger's I think comes in, where he thinks in very black and white. I am a boy and I have to be like this and I am like no you don’t. You can be anything you want. You know.
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Bobbi found the process of getting a diagnosis ‘incredibly frustrating’.
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Okay. Charlie was, Charlie was born in 2001 and I guess it was probably when he was two years old that I realised that there was something unusual because of his activity. He was what we considered at one point hyperactive and for the longest time we thought he had ADHD. His … he seemed to sort of wind himself up, he had problems going to sleep, he had problems... and we realised after the fact, any time we went into a new area, he seemed to get extremely hyper and extremely active and of course obviously we would remove him from the place that we were at and we sort of, I guess at that point probably labelled him ADHD ourselves, and I started looking into the internet and things.
But things didn’t sort of match up as such, so I went to my GP and I said to her that I wanted to get some sort of advice further and she put us onto, I think it was child social services initially, with a social care worker in [hospital] and we started seeing him initially on our own and again everybody kept… we kept sort of, we would focus more on the hyperactivity aspect and it probably wasn’t until we went deeper into the different things that were going on with Charlie, like he would smear, he would get a hold of his nappy and just smear it all over the place, that didn’t sort of coincide with things that I was reading about ADHD and I think it was me that first brought it up in the sessions with the social worker, who by that point had already met my eldest son Jack and Charlie together, and then Charlie on his own as well as with us and it probably was me that brought up Asperger's first.
But it was through a lot of work, but I guess it was, it was me that brought it up and it was me that sort of through wanting the diagnosis and pushing a diagnosis we finally got referred to – I think it is [assessment centre] another group where they take a lot of different doctors of different areas and assess the child in one day and that was the best experience I ever had because that was the one time that everybody was confirming what I already thought. They decided at that time that they couldn’t go with the Asperger's diagnosis, though unofficially that is pretty much what Charlie is, but Charlie had delay in speech and I don’t think it was a dramatic delay. There was a bit of contention there, because I think I was speaking more for Charlie. I think I was interpreting more for Charlie, so I don’t think Charlie chose to speak. He wanted to and he would speak with me but not with other people and I think that is where they thought there was a problem so therefore he got diagnosed autistic spectrum disorder.
And from then on everything has been a lot easier. But to sort of get that diagnosis, to pinpoint those people down to say come on let’s get on with this, what is going on was very, very difficult at first and I found it incredibly frustrating.
I also found the whole process of going through social services very, very frustrating as well because [sigh] they never really looked at us and what we were doing wrong, as such, or blamed us, or anything like that but there was a lot of and I guess because children are… you know, they change as they grow, and the problems aren’t always apparent right away. But it just seemed like a very tedious procedure, do you know what I mean? And a very … because I just wanted to know, you know, and I wanted to make sure that when he got into his reception year, and specifically by first year, that if there was help that was needed for that child that he got it. And because we got the diagnosis eventually and we got it that one day, we were then therefore able to go to the council and say look, you know, and go to the school and say look, we think he needs statementing. |
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Bobbi describes getting the diagnosis as ‘light bulb moments going off all over the place’.
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So I think that when I realised that early on Charlie was unbelievably brilliant at numbers, really good at numbers, and had a real affection for languages that were ‘sing songy’. Things like that then, I don’t know just something snapped and I just thought ‘yes maybe’ and googled it and brought up a load of stuff. And I think it was through the National Autistic Society first that I learnt mainly about it. And a lot of things made a lot of sense, a lot of sense. And then to get the diagnosis for that one day with all the doctors there, it was like ping, ping, ping, like light bulb moments going off all over the place and it was a real relief to be honest with you, it really was, because for me as a mum it made me feel like I did understand my son. Because for a lot of years I didn’t feel like I did, you know, may be not years, but for a good space of time, I really didn’t think I understood him at all.
Well we were at the worst before this place. We were in a smaller flat and like I said he was smearing and things like that, I really didn’t think… I thought I was the worst mother on the face of the earth at that time. It was horrid you know. And to then feel like okay, no, it is not your fault and yes you are right, actually, you do understand your little boy. You are on the right track. It was like, oh thank you, you know, okay, it sort of re-affirms you as a mum again. You feel like okay I am on the right track. I may not be the best mum in the world but at least I am heading in the right direction.
And how did your partner feel when you got the diagnosis?
The same. Same. I mean David and I are unbelievably close. He was literally born a year and a day before me. We are like two peas in a pod as well. It is funny very, very similar, very different, he is very more… I am very outgoing, where he is very, very laid back. And everything that I sort of researched was, you know, either being passed on to him, or he was researching as well. And we were coming to each other and the end of the day and saying, “Well may be it is that. Or may be it is me.”
Oh your partner was …
Yes. Yes. We would come together. And he was like well may be it is this, or may be it is that, or may be it is the other thing. You know. And, and when we went to that, that session with all the doctors it was really good because we were on the same wavelength and they kept saying to us, “Well you are going to feel that it is a shock, after the diagnosis, you are going to feel a little bit…If you have any questions come to us.” And David and I were just like, “Actually we feel utter relief.” More like phew OK, we are on the right track, you know, we know now that everything we have been looking up, we know probably, well not as much as they did in any way, shape or form.
But you know at least we were at the beginning of totally understanding and we sort of accepted at that point that there was something going on with Charlie without a doubt. You know so there was no shock, there was no sadness, depression, or any of that after the diagnosis except for OK well now I have something to work for. Do you know what I mean? |
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Bobbi finds her son’s bluntness refreshing and thinks he can get away with it while he is young.
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He is very much into music. But he is a very critical person, an unbelievable critic. If you are not singing well he will tell you. He is very blunt in company, he will, and once again that is probably the Asperger's, but he doesn’t say it in any way in malice. It is just sort of a fact. You know, you are in a crowded train on the tube and he is “mum it smells”. You know. But then I like that. Part of me likes that, you know. And part of me worries because he is six years old and he looks like a little cherub. He has got blonde hair, blue eyes, and he can get away with it right now. And I am wondering for how much longer he is going to get away with this and we probably let him get away with, in company, all of us, because we take it, we don’t take it as it is embarrassing us. Do you know what I am saying? You can be in mixed company and somebody could be acting like a complete idiot whether they have a problem or not. And because we all take things very lightly in our family, you know if he is acting up we laugh, you know, and it seems to diffuse it and it also seems to sort of calm him down and we get on with our business. And if anybody is staring at us, we are just so what, you know who cares. And I would like to think that both my boys will grow up feeling that. You know to be themselves as the ultimate at the end of the day you know, and no worry about what other people think about you, you know, that is all we can ask of. But he is a fun boy. He is really fun. |
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Bobbi adapts the situation to Charlie rather than not going on holiday.
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And that was a real learning curve. You know when I look back on that now we do have to think is the room going to be big enough for him to have you know space in? Is he going to be comfortable in the room? He has gone in a small caravan which is really good because space is an issue for Charlie. If it is too small he can’t deal. But he has gone on a caravan holiday with us, which was a specific park and things all around going off and he had a good time. We do always have to think about how long are they going to be in the car for? Do we have everything that they need in the car? You know you have to, it is sort of packing for your kids as you normally would but extra, you know.
Making allowances for breaks, you know, more so than you probably would with, you know, the average eight year old, six year old, whatever. But we try to do as much as we can anyway. We try to still do it. We try to still go. You know, we haven’t not gone because we don’t think Charlie is going help… deal with it. We try to adapt the situation to Charlie. Does that make sense? Rather than saying no, forget it, it is not going happen. It is okay well how can we make it happen? |
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Bobbi has found not being able to do things as a family one of the hardest things to deal with.
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Bobbi explained Charlie’s differences to his classmates while they were on a school trip.
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Well I will give you an example of what happened when his assistant couldn’t make it one day when we were going for a school trip. The school trip was to [area] which involved taking Charlie on the tube, which he is perfectly happy to do because we have always been like, let’s go. Got him sort of over that when he was quite very young, he still doesn’t like tunnels, still goes like this, but on a tube train, this one friend of his kept saying over and over again. “Charlie doesn’t do any work. Charlie just messes around and plays all day.” And the first couple of times I was like, “Oh no, no, he doesn’t.” Because of course the teacher was there and head of the school was there and I didn’t want to overstep the mark, but unfortunately we were delayed. We were sitting in Bank Station and the child said it again, and I turned and I said, “Well no, actually,” I said to the child. “You know, that is not necessarily the situation.”
I said, “Charlie actually works very, very hard.” I said, “Do you see Charlie go to different groups during the day?” And he is like, “Yes, I do.” I said, “Well that is when Charlie is working very hard.” I said, “Charlie learns differently than you do.” I said, “We are very good at different things.” I said, “I personally can’t do numbers. I can’t add numbers up in my head. It is very, very hard for me.” And Charlie of course jumped in and said, “Oh two plus two is di dah di.” And growling off numbers. So I said, “See Charlie is very good at numbers.”
And I happened to know this kid was very good at writing. I said, “You are fabulous at writing.” I said, “So we all have different things that we are very good at and very not good at.” I said, “And we all have things that we are very afraid of and we are not so afraid of, that we can be braver sometimes and we can be very afraid other times.” I said, “Have you noticed that you know when you try to go into the hall?”, which is one of Charlie triggers, I said “Charlie doesn’t like the hall very much, does he?” And he goes, “No he doesn’t.” And then the one kid next to him says, “Well I don’t like spiders.” I said, “Well see, there you go. We are all different. We all have different things that we are good at and we all have different things that we are bad at.”
I didn’t [go] very much further than that. Because to bring the story back further, I have been in talks with the National Autistic Society to get a representative to come to the school and a local representative said to come to the school at some point to talk to the teachers and I also want to get the parents involved as well. And I also know that his teacher is trying before the end of the term, she is going to try to do a session with the kids about their strengths, their weaknesses and how we are all very different. So I didn’t want to sort of overstep.
But I did then say to the child because Charlie has been told about Asperger's, he is told that he has Asperger's, because he calls it ‘abergers’ sometimes and then he has a think about it and then the first part of the word really grabs him and he drags that part out, you know. So we have to be careful. But I did say to him, I said, “You know we all have things. Like I need glasses, you know, but…” I said, “Charlie has got something that is actually called Asperger's.” I said. “And that makes it difficult for Charlie to deal with loud noises, he doesn’t deal with lots of new people.” And I said. “So that is what like it seems that Charlie is acting silly, when he is not really silly. He is just nervous.” And the child was like, “Oh, OK.” And then one of his very good friends, [friend] knows all about Charlie and was explained it before with Charlie in the group, you know, she was like, “Oh yes, I know all about that, you know, but Charlie is fun and that is what makes Charlie fun.” And as far as that is concerned that is a bonus. |
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Bobbi describes the statementing process as ‘mind boggling’ but felt well supported by professionals.
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Mind boggling. I mean because I am American anyway. And then David said to me, it doesn’t matter, he said he never was in the process of it. He looked at it and was ohhhh. And it was, it was scary. But you know I felt that it wasn’t too scary that I didn’t think I could handle it, we could handle it, or that we needed somebody to guide us through it. You know, when they asked us for our evidence that part where they say parental evidence, I think I gave them fifteen pages of typed, you know, I mean we were so on top of it by that point that even though it is difficult, even though it was slightly confusing in some places because at first I wasn’t sure whether or not they had the ability to pull him from the school. And that was something that I was really concerned about, because it really was important that he stayed at the school he was in. And I didn’t want them to say, well no, we judge that he is not going to get the support, he needs to go here. And when that didn’t happen it was much easier.
We are coming up for a review and again I am like ee hee hee. But the people involved because they are, because we have been involved with them more than once you know the SENCO with the school, and the educational psychologist, has always been available through the school. And whenever they have come in and they see me they make a point to say hello me. And because they were so contactable I guess and the doctors and stuff that are involved, they have always been very supportive. I guess they have made it easier, you know, all along, and I guess that it takes out some of the worry about the process, because you do feel like you are bogged down by paper work a bit, you know, and by procedures slightly. And at first we only got fifteen hours and we fought five more, and five more and we gave no evidence and because that went through so easily – they didn’t fight us I guess is the point I am trying to make which gave me more encouragement and I feel more empowered to deal with now this one, because we are going to ask for another five more hours.
Without a doubt, without a doubt because we really, really do think that he could progress so much further and really reach, because he is not reaching his total potential just yet. That five more hours we really do think is going to make a difference. A bit more and I would be hey… but you know you take what you can get. |
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Bobbi thinks her son will be very worried about puberty, particularly after he found having chickenpox so hard to cope with.
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It is a bit early for you to think about puberty?
Oh scary. Oh my God [laughs]. My eight-year-old I think is just hitting hormones and no I am scared. I am actually worried about puberty. I am actually worried yes, because years ago he said to me that he didn’t want to grow up. He liked staying the size he was. He was worried about getting bigger, you know, and we have had glimpses of that every once in a while where he is sort of proud of the fact… we have a chart on our wall that how much he is growing and he is proud of the fact that he is getting bigger but then he is also scared of the fact that he is getting bigger because that means change, and therefore change is this whole big open thing, that is a little bit scary to him. So I am actually worried about puberty for him.
Because I am worried that number one, he won’t… I try to… both my children has had sex education that is appropriate for their age right now. Charlie does know where babies come from. He does understand the basics, the very basics of the whole idea. But I am worried for him and his confidence when his body changes. I do think it is going to be an issue for him and I do think it is going to worry him. And I think he will probably become quiet, because when he is worried about things becomes slightly quiet too and then I really know something is wrong. Do you know what I mean? For example he just came out with chickenpox recently. When they were coming out he was trying to push back in, you know, he did not like the fact... And then when we said to him it is chickenpox that is happening. He got it a year ago and now he has got it even worse. So he is getting over it now. But while he had it, it was ‘no I don’t have chickenpox. A lot of bees came in that night and sung me instead’. Because the idea of chickenpox was oh, oh, this whole big thing from what he heard.
So that worries me too when, you know, all of his peers are starting to change and they are going to start to mature, is that going to become this, you know what I mean, this whole big thing for him and is he going to fear it even more. Thankfully we are not there and I have thankfully I will have the experience of Jack going through it first which is sounds bizarre but I am actually really thankful for that, because like I said, I don’t know boys. Boys are foreign to me. So this whole thing will be new to me. So having that … knowing that obviously both children are radically different, and all children are different, but having the experience of going through it once first will probably help me prepare Charlie a little bit more and I am hoping to prepare him but I am scared too, because I am a mum and I don’t know if little boys don’t want their mummies to be near them at that time, and you know am I going to have to look to my husband more to lead at that time, you know. So yes, I do think about it already. I really do. |
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Bobbi is looking forward to seeing her son develop and thinks it is going to be a “really cool ride”.
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And finally how do you view the future?
Very positive. Very positive. Scary but positive. I know I am always going to be a part of his life. It worries me more when he is an adult then as of now. I am also concerned about the pressure I put on myself too, to make sure he is prepared for the future because I am really pressuring myself now because I think now is where the groundwork goes in, now is where it is going to make a difference. If he doesn’t get the support, the help he needs now, where is he going to be later? So I am concerned about the future. I am worried about probably more so what is going to happen when I am no longer around. That is probably my biggest concern but as that is far away, we don’t think about it too much. But yes, no I am also looking forward to the discoveries he is going to make, to what he is going to become. The person that he is developing into, you know, I think it is going to be a really cool ride. Without a doubt you know. And I think he is going to be a really cool person. Both my sons without a doubt. But he has got such a unique take on the world I think he is going to bring something different to it. |
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Bobbi’s friends are “spread all over the place” but she is in regular contact through the internet.
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Do you use support groups at all?
No not really. I mean I am on the NAS a lot. I do have, I am on the internet all the time, okay, and although my friends are spread all over the place and every one of them are in contact every day at some point and I rely a lot of my friends. And my friends are very open. I am lucky to have a friend in Ireland whose father works in the education system and is also very familiar with special needs kids so I get a lot of information. You know a lot of advice sometimes from her through her father. He is a wonderful man. And I have got very good friends in the States. My mum is massive advocate all over it. You know, where I might not necessarily get a lot of support on one area of the family, I get more than enough in the other, if you know what I mean. And my mum is all over it, just constantly sending me information, she is constantly on the phone to me. She is making sure everything is okay.
Other than that, do I talk to anybody else whose children are … no. I probably don’t come to think of it. No. Hm. I know I am a member of the National Local [er] the local Chapter of the National Autistic Society and goodness me I have never even taken it up. How bizarre is that? No. That is really… that has made me think… I have never even thought about it. I guess I have called the hotline that they have as well a couple of times on certain issues, but to be honest with you I am really into books. I have been taking a couple of courses. I have already taken ‘Working with Autistic Children’. I am now going to be taking an effective communication course and I am also going to be on the Help! seminar through the National Autistic Society. So I guess I probably rely more on books and sort of my personal take on what is going on then other people’s experience.
Maybe as Charlie gets older I might actually reach out to other people that are. But I guess right now I am probably more focused on my situation and I guess I am getting all the answers I need already. |
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Bobbi uses the NAS website but now limits the amount of books she buys off their website each month.
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Oh goodness me, National Autistic website without a doubt. Without a doubt. I get most of the publications through them. Anybody that is dealing with any issues of their kids that don’t eat like mine does, the Can’t Eat, Won’t Eat books opens… it doesn’t necessarily give you, okay here is the answer, but it makes you go whew okay I am not the only one. Thank you Lord! My son likes the… there is a couple of the kids ones. One about, I think it is about my brother has Asperger's. Let me tell you about Asperger's as well. And then there is the one about all cats have Asperger's. Oh my goodness Charlie is hysterical on that book he thinks that book’s, well because obviously the cats, thinks it is great and Jack has taken that book to heart as well. To the point where he has had a friend over and I found them reading it. I was like this is great, you know, I can’t get any better than this.
The, what else. I can’t think of any specific ones. I mean all the course ones that I am doing as well have been brilliant. But they are all, like I said all through the National Autistic Society. I have just gone to their book site and sort of gone, there, there, there, there. I go on it every month and I have circles of books that I want and every month I am like just getting them. I have to limit myself because I probably would have bought at least fifteen of them right off that without a doubt. |
