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.