Things People Say.

I thought I would write this post about the things people say when you tell them that you have a child with autism. Don't get me wrong, I never mind people offering advice and I know that everybody means well when they say things, but when you hear the same thing day in, day out it does get a little tedious. I think the one of the first things someone said (in fact, several people said) was pre diagnosis. When I would talk to people about some of the quirky behaviours Isaac displayed, people would often say "Oh my child does that/all children do that."  I agree that all children may well have a favourite toy or dvd that they like more than any other but not to the exclusion of everything else, not to the point that they watch that same dvd over and over and over and then walk around the house reciting it word for word. Not all children refuse to have 2 different foods on the same plate and have to have separate plates for each different food, not all children would throw the food they didn't want on the plate onto the floor because they simply can't stand it being on the plate. That was how it was when Isaac was a toddler and a lot of the issues (especially the food ones) are issues that we have managed to overcome. Now though, it's the behaviour. Isaac is very verbal and comes across (on a good day) as very articulate, his reasoning skills and understanding however are not so good, this means that when anyone is trying to explain something to him or if he doesn't want to do something or be somewhere his behaviour will escalate and usually end up in total meltdown.  Recently Isaac was having a major meltdown about doing an activity, he went into total meltdown which involved screaming, shouting, lashing out and swearing.  Another parent, obviously very well meaning told me she had the same thing once her daughter got herself into a state about something, she couldn't reason with her etc. I'm sure that she did but the difference here is that her daughter is only 3, Isaac is almost 8 and whilst it is understandable and indeed acceptable for a 3 year old to behave this way, it is not for an almost 8 year old.

Another thing people often ask me when they find out Isaac has autism is did he have his MMR. Yes he did. Do I think it caused him to have autism? No, I don't believe it did. I noticed from a very early age that there was something 'not quite right' with Isaac, looking back on when he was a baby there were many red flags in his development and with hindsight, it was obvious from a very early age that he was showing all the signs of autism. My honest opinion is that he was born with autism, he had it from day 1, obviously it is impossible to tell from looking at a newborn or even an older baby to tell that they have autism as the behaviours and signs become more apparent the older they get.  I do however understand why some people feel that having their child vaccinated with the MMR vaccine caused their childs autism. Some children appear to develop very normally up until around the age of 18 months or so and then regress after they have had the vaccine, Isaac was not one of these children and I therefore do not believe that taking him for his MMR caused his autism. Also, as a parent I did an awful lot of research into Dr Wakefields theory and found absolutely nothing that convinced me he was right, in fact there is no evidence to suggest that his theory is correct and a lot of evidence to prove it is not.

Another thing that people say to me is "he doesn't look like he has autism!" What exactly does autism look like?  I often feel a little bit baffled by this one, autism is an invisible disability, it doesn't have any particular features, although I often think that the children I know who have autism are incredibly beautiful, each one seems to be particularly stunning. There is no medical test that can confirm autism, nothing that shows up in any chromosome or genetic test that will absolutely 100% confirm this diagnosis.  Sometimes as a parent that is tough to take. I mean, I know he has autism, I have know for a very long time, since before it was officially confirmed by the paediatrician.  The lack of any scientific evidence though is something that is hard to deal with, it makes the diagnosis hard to accept. What if he is just a little odd in the way he behaves? What if all children DO behave the way he does? What if he really doesn't have autism and he is just a little quirky.  Of course you get the "Oh isn't autism just a word for naughty boys" gang and the "well we're all on the spectrum somewhere" group as well. Again, that's not at all helpful to all us parents who are struggling to come to terms with the enormity of our childs diagnosis.  Sometimes if I'm honest I feel a little bit cheated that there is no definitive test that will 100% give me the answer to the question of whether he has autism or not, I think I will always wonder whether his diagnosis is actually correct despite it being confirmed by 3 different paediatricians, occupational therapist, educational psychologist, clinical psychologist etc.  I think it's safe to say that his diagnosis is correct but as a parent I would find it easier if autism did have a 'look' or a specific genetic pattern and I also think other people would find it easier to accept too.

Another thing people often say to me when we are talking about schools and education and I tell them that Isaac is fairly bright is "They often are look at Einstein." Who are they? Yes some children who have autism are incredibly bright but some are not, some have learning difficulties and like all children, children with autism have varying academic abilities. I am under no illusion that Isaac will be the next Einstein but nor does he have a learning disability. He is achieving well at school but it's not all about academics.  Isaac could walk out of school with several GCSE's and A levels but what help are they if he never develops the ability to be able to live independently and that is something that really worries me.  I have no idea how Isaac will cope in the real world and the thought of him growing up and becoming an adult is something that frightens me a lot. I know he is young and he is in an amazing school where they do an awful lot of work on helping the children and young people work towards and independent life but it really does worry me whether Isaac will ever be able to cope with living independently in the real world.  I try not to think about it a lot because it really does upset me.  I know that none of us know what the future holds, but, if we are honest we don't really give a second thought to our children growing up, leaving home and getting married/having children etc because that is they way things are meant to be, that is the way things happen.. Our eldest son has recently left home and gone to university, obviously we miss him and are extremely proud of him but him going has made Isaacs uncertain future hit home to me a lot.  Isaac probably does have the capacity to be able to do a degree in the future and pass it with flying colours (especially if it is something he is passionate about) but I would much rather he learnt to function as an adult in society than get a first class degree and not be able to.

The next thing I often get, especially when we are going through a more difficult time is probably the one I struggle with most.  Special children are given to special parents.  This is often followed by " I don't know how you do it, you are so strong, I couldn't do it."  Actually I find it kind of patronising. When my almost 8 year old is having a tantrum over something seemingly petty, I don't feel particularly special, and if I'm honest, I don't find him particularly special at that moment. There are days when I would give my right arm not to be that 'special parent' because quite honestly there are days when I hate autism with a passion, there are days when I wish with my entire being that we were not the parents chosen for this 'special child'. The days when I watch my child struggling so much and being unable to reason with him or help him understand why something is happening, the days when he cannot find the words to explain to me why he can't do something or tell me that he is sad/frightened/angry/unwell, the days when I have to play detective and I get it wrong. These are not days to tell me that I am chosen because I am special and up to the job because that is not how it feels, these are days when I feel totally ill equipped to do the job of being Isaacs parent and do it well, these are days when I feel as though I am stumbling blindly through each day just trying to survive.  As for the telling me I am strong and you don't know how I do it, you wouldn't be able to. Well let me tell you, I'm not strong, there are many days where I just cannot hold in the tears and frustration, where I break down and honestly feel like I can't do this any more, in fact I don't want to do this anymore. As for the not knowing how I do it, well I don't actually have a choice, Isaac is my son and I love him with all my heart, I love him more than I hate autism and so I do it, that doesn't make me some sort of saint or hero, it makes me his mum and actually you could do it and indeed you would do it if it was your child because despite the difficulties and despite the fact that there are days I wish life was different for us, I look at my little boy and my heart melts because my love for him exceeds every other emotion about anything and I know that I will do anything for him.

The final thing that I often hear is "Have you heard about.......... (insert latest theory or miracle cure)" Never entirely sure what to do with this one, it's often about the latest theory or research project that can cure your child of autism.  I'm all for research and Isaac has been a part of 2 different research projects run by Cambridge University but I don't think that they will ever really be able to tell what causes autism and I certainly don't think there will ever be a cure. The research Isaac has taken part in is actually to find out more about how autism can be identified earlier and how it affects the structure and function of the brain.  The latest theory is that if we get our children to eat broccoli then the 'symptoms' of autism lessen.  Oh my days!!!!! As most parents of an autistic child will tell you it is nigh on impossible to get your child to eat the stuff anyway, personally I do like broccoli but Isaac looks at me like I'm trying to poison him if I even suggest he just eat a mouthful of it (and he is one of the few children with autism who does actually eat a good diet) not to mention that you would have to eat huge quantities of it before any of these questionable benefits are seen. That is the reason for the above picture, if they could find a cure involving food our kids would eat, that would be great. As a parent who has a child with autism, not to mention being a bit of a control freak myself, I have done huge amounts of research and discovered that most of these theories and miracle cures are a complete and utter load of rubbish and it makes me so cross that people will stick theories out there that are carried out on such a tiny sample of children and declare them a miracle cure giving hope to so many families and no doubt costing them a fortune just to find out they are wrong.  As I posted on my facebook account the other day I have carried out my own extensive research and discovered that if you get pregnant you have a 1 in 88 chance of having a child with autism, not exactly rocket science I know but there you go.

Anyway, sorry to anyone who sees this post as a bit of a rant (I guess it is a bit) but sometimes I just need to get it all out of my system especially when we are going through a difficult time and that is the reason I started this blog in the first place.

Daily life, the ups and downs.

Living with a child who has autism has many ups and downs. There are times when life can seem almost normal (for want of a better word). Things move along pretty smoothly and without a great deal of stress, the strategies that we put into place such as visual cues, no surprises, plenty of warning if and when things are going to change all seem to work and life is good. There are however other times when life feels like it has been hit by the mother of all hurricanes which shows no signs of coming to an end. If I'm honest, the hurricane is right where we are at now. Isaac by his nature does not cope at all well with change, any changes need to be carefully planned and prepared for and even then are met with resistance.  At the moment so much has changed in his life that it sometimes feels as though he will spontaneously combust in front of me and nothing I can do will help.

Obviously with it being a new term Isaac has moved to a new class, he has a new teacher and 2 new children in his class (there are only 5 children in his class in total so 2 is quite a large proportion to him), I have returned to work part time and although I leave the house after he has left for school and return before he comes home, he knows I am not there in the day and that bothers him. His big brother who he is incredibly close to has just left home and gone to university and the Church that we attend has moved to a new building and changed the way the childrens work is done. That is a lot of change for anyone, but to Isaac it totally blows his world apart and leaves him feeling out of control, that in turn totally blows our world apart.

  

Currently, as Isaac is struggling with so much change it means his behaviour has escalated he has regressed and we are back to him having daily meltdowns, avoidance behaviour and violence. So far since he has been back at school he has refused to get in his transport twice, this has meant me having to take him the 15 miles to get him there which obviously has me made me late for work, thankfully my boss was very understanding.  Even once I got to school with Isaac he then ups the ante by refusing to get out of the car. His school are more than used to this and I phoned them from the car park asking someone to come out and help me. Once the staff came out to help me to get him out of the car and into school full meltdown ensued, this involved him attacking both me and the staff as well as screaming and swearing at them. Eventually it took me and 2 members of staff to get him out of the car and into school. Once in school he was hell bent on getting out and proceeded to rip down displays, scream and shout at staff as well as physically attack them, he wanted them to phone me and kept escalating his behaviour to try and make them. Luckily his school are used to children like Isaac and will not exclude him (which is what he was wanting them to do). He did calm down and then used his reward time to help put the displays back on the wall.  When he came home he was not impressed with me for taking him to school and made no secret of that. We then had the same situation the next day only this time he clearly realised that misbehaving was not going to get him sent home so he decided he was poorly. I checked his temperature and as he didn't have one he went and ran his head under the hot water to try and get himself one.  Again I was late into work as I had to take him in. This time when I took him in I saw the pastoral care officer and ended up bursting into tears on her, she was very lovely and was stunned that we were not able to access outside help for him. She promised to try and source out some sort of help and support.

Isaac will try anything to control situations especially when he is feeling out of control. One of his tactics is to refuse to go to the toilet for a poo, now this might seem funny to some people and indeed if someone had told me this was a thing that children did to gain control before Isaac, I would probably have laughed and thought it was ridiculously funny. However, Isaac has gone for 9 days without going, this obviously has left him feeling uncomfortable and particularly grotty, which in turn leaves him prone to more and more meltdowns. Isaac has been on medication for his toiletting issues for 3 years, his meds can be upped and reduced as needed and he is currently on the maximum dose he can be on and still refusing to go. This obviously causes concern as it is making him unwell and affecting his behaviour a lot. He absolutely refuses to go and any suggestion of him going is met by a 2 hour meltdown. We have tried sticker charts, bribery/incentives and withdrawing things we know he loves such as his ipad or computer games, no treats etc but nothing will shift his mindset. One evening I was so worried about him as when he needs to go he will constantly punch himself in the stomach as he is walking around in circles. I contacted my GP who told me to take him the following afternoon, at that point I had a meltdown of my own, without wanting to gross people out too much he had started burping and bringing it back up out of his mouth!! The GP referred us to the hospital to see the paediatrician. Isaac hates hospitals at the best of times, but when he is in pain and stressed he is much worse. I took him up and was seen by the paed who confirmed that he was basically full of poo and due to his heightened state (punching and kicking the paed as well as screaming full volume every time he tried to examine him and attempting to escape from the hospital) there was really not a lot that could be done other than to max out on his meds and wait for the fall out. The paed advised me to keep him off school, however, as he is trying to avoid school at every cost at the moment I decided that keeping him away from school because of this was absolutely not an option. If Isaac realised that refusing to go to the toilet was his ticket out of school then it would give him a whole new way to not go.  That night I had around 3 hours sleep. Isaac is not the best sleeper in the world anyway and I hear him up several times most nights but this night he was up and down and was clearly desperate yet still he refused to go. I sent him off to school and Phil suggested taking the day off as I was practically dead on my feet but I wanted to go to work despite feeling rough.

Let me explain to you what work is for me. 4 years ago I left my job to become Isaacs full time carer, we had so many appointments and assessments to go to that me working was simply not practical. Financially we were worse off and had to tighten our belts but it was doable and was really the only option, Phil could not give up his job as he was the main wage earner and one of us needed to be at home to do all the appointments, that was me. When Isaac started school I had hoped to return to work but there was never a right time, the appointments were still ridiculously frequent and on top of all the ones we already had we had to add CAF meetings and other meetings at school to the mix not to mention all the phonecalls from school and then the exclusions.  Finally after Isaac started at Gretton I felt time was right for me to go back to work. We could manage financially (just about) with me not working and some people asked why I was going back. I will explain. I wanted to go back to work because I love my job, I actually love what I do and as much as I love being a wife and mum I wanted this for me. Going back has made me realise how much I missed being at work, talking to other people in the day, having friends and most of all being somewhere where I am me. Not someones wife, not someones mum, but me, Hayley. Work also gives me an escape from all the trials and the stresses and the heartaches that living with autism brings. That may sound selfish but I want this for me. It doesn't impact on the care I give to Isaac or any of my other children, it fits in with the hours they are at school and I get the holidays off so even setting aside the fact that I love it, it fits perfectly and I am not prepared to give that up.

There are times when I find that everything gets on top of me, the enormity of his diagnosis gets too much, these are the times when I breakdown and have a cry and a rant, usually about the lack of access to any services. The paediatrician asked whether we had social services support, we don't, we had a social care assessment last year and they concluded that we could meet Isaacs needs and there was not any support available to us. I told him this and he mentioned that I should call them again saying something about me being worried I might harm Isaac, I can't remember his exact words as Isaac was being very challenging and to be fair he had witnessed some pretty extreme behaviour as he was trying to examine Isaac. I told him that I was never worried that I would harm Isaac to which he said that everybody has a breaking point. I couldn't agree more and believe me I have felt very close to that breaking point on a lot of occasions. The thing with breaking points is that you have to know when you are close and take a step back and that is something I am very good at. I can step out of the room he is trashing, take a few moments to breathe and regain my composure and then go back in again. I also think that when you are a parent to a child that has Isaacs level of need your breaking point becomes a lot further away than it used to be, it has to and I think that although Isaac has pushed me almost to that point on many occasions, each time I almost reach it, it pushes back a little more. I have learnt to be a lot more patient than I used to be and that can only be a good thing.  

My way of coping is to have a good cry and then talk it out with friends. I also belong to some forums where when I am struggling I can post and member will post back with advice or words of comfort letting me know I am not alone. I also constantly remind myself that Isaac is not behaving this way because he wants to, he doesn't want to be so out of control that he can't cope, he doesn't choose to not be able to express his emotions to the point that it all builds up inside and he has a meltdown. I look at him and realise how totally and unconditionally I love him and that brings me back down to earth.  I look at him sleeping (yes it happens occasionally) and he looks so peaceful and I wish I could just get into his world and see what it's like for him so I could understand. The thing that upsets me most is that I don't understand, one day when he was coming down from a meltdown and he was sobbing, he looked at me and said "You don't understand." That broke my heart, because I don't understand and he can't explain to me so I am constantly trying to second guess and I often get it wrong which is hard. There are days when I feel totally ill equipped to be his mum and then I remind myself that God gave me Isaac for a reason, he chose me to be Isaacs mum because he knew that I could do it, he has faith that I can do it, I need to have that faith that even when I feel like I can't, he will bring me through the storm to the other side. So far he has a 100% track record for doing that so I have no doubt (well ok, sometimes I doubt) that he will bring me through this rough patch to the other side. There are times when I get angry and think why Isaac? There are times when I hate autism and what it means for us with a passion and there are times when I am so angry to see my little boy struggle, I get angry with God, how could he put my little man through all of this, but he has big shoulders and he knows my thoughts and how to bring me through these times, he also knows the right people to place in my life, to give you an example, when I started to go to the Church we go to, the first week we went I was getting a coffee after the service with Isaac, he wanted a biscuit and at that point he was still struggling with social speech, as the lady gave him a biscuit I signed 'thank you' and told him to sign thank you too which he did. This lady commented that he signed and I told her that he had autism and sometimes struggled with social conversation, she then began to tell me how she worked in a school for children with autism, less than 2 years later Isaac is now attending that school and this very lovely lady and I have become good friends, she is there for me when I am down and is very good at letting me sound off and listening and being a shoulder for me to cry on. That is what we call a Godincidence. God knew that she was a good person for me to meet and be friends with that is why he led us to The Bridge Church.

There are days where I wish with all my heart that Isaac didn't have autism, but he does and most days I do see it as a blessing. As I have said in previous blogs, he has taught me so much and helped me look at life in a totally different way, he has helped me to view life from a different perspective and whilst the view is sometimes a little obscured it is still a far more beautiful view than I had ever thought possible.