Diagnosis or label?

When we first started out on our autism journey several years ago diagnosing was not something I ever really thought about or questioned. To me it was simple, if there is an issue, you go to the Dr and if there is a problem they diagnose it.  Oh how things change. It would seem in the case of autism (and the many co morbids that go alongside it) that diagnosis is not that simple.  Now don't get me wrong, autism is a complex condition that presents in many ways and diagnosing it, especially in higher functioning children or those with aspergers is not that simple especially when children are younger.  

The issue that I have here is the terms used by so many people, many people, including professionals, seem to have an issue with the word diagnosis when it comes to autism and other related conditions. People constantly refer to it as labelling! From the age of around 2 when autism was first mentioned (roughly 6 months after Isaac was initially referred) as a possible explanation for Isaacs difficulties the same phrase was used at the majority of his appointments; "We don't like to label children." At the time I didn't really give it a lot of thought as we were going through the diagnosis process which in itself took over 2 years.  I remember an early support worker going into Isaacs nursery, after she had spent some time with Isaac she then met with me and told me that he did display some definite problems within the triad of impairments. I asked her if in her opinion he had autism.  Her response to me was to ask me why I was so keen to label my child.  That response hit hard, at the time I had lots of thoughts spinning around in my head, I had always known from very young that Isaac was not like my other 3, he was different in every way. All children are different and my older 3 are all completely different from each other, but Isaac was different in so many ways.  If I'm honest, her response upset me a lot, after all, why was I pursuing this 'label' for my child?  By this point we had been under the care of paediatricians and various other professionals for around 2 years (since Isaac was 18 months old) and we had been given so many conflicting opinions which I have detailed in an earlier post. At this point I thought that maybe I should just drop it, after all, all it was succeeding in doing was upsetting me and starting to take over my life. I analysed everything Isaac did, the way he played, the way he spoke, his lack of eye contact, his stimming, he quirky little ways. Maybe it was just how he was and there was no need for a 'label'.

Even though I was being told at this point from most of those involved that there was no need to label children and it served no purpose and also that whilst Isaac ticked lots of different boxes for lots of different conditions, he didn't at that point tick every single box for any one condition.  Now to me that meant that there were definite issues in several areas but to the professionals involved it meant they didn't have definite evidence pointing to any one thing as an overarching diagnosis and that meant no diagnosis.  Eventually after several more months and me becoming more and more stressed and therefore more and more stroppy and probably not endearing myself to any of those involved with Isaac I asked for a second opinion. Isaac was seen and the diagnosis was made that day.  Still though we had the issue of the term 'label' with the paediatrician who diagnosed him asking me whether I thought a label would be helpful.  Again, at that point I think I made my feelings very clear.

 This is Isaac. Isaac loves cuddly toys, he likes spongebob, lights, buses, trains, the list goes on. He doesn't carry a label around with him that says 'Autistic' He is simply Isaac.  So when I hear others refer to him as being labelled, my response (which depends on my mood and how much sleep I have had) varies. At times I smile sweetly and bite my lip, at other times I explain in no uncertain terms that he is not an item of clothing,nor is he a can of soup, he does not have a label, he has a diagnosis. His diagnosis, unlike a label, does not tell anyone all about him, labels are impersonal and imply that each item carrying the same label is the same and requires the same care. Isaacs diagnosis of autism does not tell us that every child who carries the same diagnosis as him is the same.  He is still Isaac, he may have the same diagnosis as several of the children in his school but his personality and the care he requires are very different. Unlike some children with autism Isaac is very tactile, he loves hugs and holding my hand, he loves to lay next to me and have me stroke his back or his arm, he craves touch, yes he shares traits with other children with the same diagnosis but that does not make him the same.  My argument to those who call it a label or accuse me of labelling my child is this; Isaacs diagnosis (not label) gives an explanation for the difficulties that he faces and presents with. You would not say to a parent of a child with a condition such as cerebal palsy or Down Syndrome that they are labelling their child so why is it different for autism.  Whether or not a diagnosis is made, the difficulties the individual child presents with are still the same, you do not make them worse by diagnosing and they do not disappear if a diagnosis is not made. In short, nothing changes, diagnosis or not. Isaac is the same child he would be whether I had fought for the diagnosis  or not. The only difference is that with the diagnosis Isaac has access to much more appropriate schooling.

In life we all carry labels around with us, whether we are funny, happy, fat, thin, ginger (obviously me lol) etc etc. Pre diagnosis Isaac was referred to as odd, hyperactive, a loner, naughty, disobedient, stubborn (the list goes on), so for those of you (including any professionals) who still see autism as a label I would urge you to rethink.  I actually find it very insulting when someone refers to Isaac as being labelled. His autism IS part of who he is but it does not define who he is. Even if after reading this you still feel that the term labelling is appropriate then I would still rather him have a 'label' of autism than some of the less complimentary ones he had pre diagnosis.

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.

Myths.

I thought I would use this opportunity to share a few common myths about autism. Whilst some of these are true for some people they are certainly not true for everyone with autism.  I guess the first one would be that children with autism don't make eye contact. Certainly for us that is not true, Isaac does make and indeed maintain eye contact. His eye contact is at times poor and almost always on his terms, but it is very definitely there. When he was a baby it was not there and if I'm honest I don't think it is something that came naturally to him, rather it was something he learnt. When Isaac was a baby one of the first things I noticed was that he never made eye contact, when I fed him and looked into his eyes he would actively look away. As time went on and he reached his toddler and preschool years I would always ask him to look at me, I would never force him or do what I have seen some people do and move his head so he had to look at me but I would always ask him to look at me, on the occasions he did look we would always tell him he had done well and give lots of praise.  Nowadays he will look and make eye contact but when he is overloaded, stressed, upset, unwell or if he feels he is being confronted then it goes. So whilst I believe that it may not be a natural thing it is definitely there.

Another myth is that children with autism aren't sociable and don't want friends. This I think is the one I find most hurtful. Isaac wants to be friends and he also wants to be very sociable he just has problems with understanding the social boundaries of friendships. He doesn't always appreciate that the person he is talking to is not necessarily interested in what he is talking about, nor does he understand that he cannot simply interrupt a conversation just because he feels that what he has to say is more important (whether it is relevant or not).  When Isaac was in mainstream school he used to come home and cry because he had no one to play with, or there was yet another party that he wasn't invited to. If Alice used to go for a play date at a friends he would cry as though his heart would break as he asked me why he didn't get to go on playdates.  At one meeting with his head teacher I told her what he had said and her explanation was that the other children were scared of him. How do you explain that to a 6 year old? Now he is at his new school he does have friends, they understand each other and although it is not easy to have play dates he did have a party for his birthday that his new friends came to. One parent told me that when her son brought the invite home she actually cried, her son had never been invited to a party before, how sad that others find it impossible to see the amazing qualities and genuine hearts that our children have.

Children with autism don't understand jokes or have a sense of humour. Well to a degree this is true for us, Isaac loves a good joke, he doesn't understand it but he still loves it. He is so funny when he is trying to tell a joke because he just doesn't get that there has to be a punchline or a funny answer but he laughs anyway and that makes me laugh. His favourite jokes for a while were knock knock jokes, he heard one and then proceeded to make up his own which of course weren't funny but he laughed all the same. One day a lovely friend gave him a knock knock joke book which he would read every morning then recite at various points throughout the day. As for his sense of humour, he has a wicked sense of humour and an incredibly infectious laugh, his favourite program for a while was you've been framed, he actually got that people falling over or walking into things was funny, to hear his laugh never fails to brighten up my day.

One of the things I am often asked when I explain to people that Isaac has autism is "What is his special talent?" Never entirely sure how I can answer that, he has an amazing ability to make me laugh even when he is being particularly challenging but that's not what they are looking for. Is he good with numbers/memorising things/does he have an eye for detail? Well, yes, all of these but nothing I would say was a special talent. His memory is incredible, he can go somewhere once and then return months later and he will notice that one little thing has changed, he does like numbers and often counts when he is stressed, but is he the next child prodigy that will take a maths A level and then go and do a university degree at an early age? No, definitely not.  His eye for detail is amazing and he will notice the smallest change in anything but I wouldn't say it was a talent.  What about obsessions?" people ask. I think it is safe to say that he is very obsessive about things but unlike some children with autism he doesn't have one particular obsession to the exclusion of everything else. When he was younger he loved Thomas the tank, he never 'played' with them as such but would watch as I built the tracks then line up all his engines (he knew the names of every single one)in order and Heaven help anyone who moved one out of the line. He then progressed to dinosaurs, he still likes dinosaurs but not to the point that he is obsessed.  His latest 'obsessions' for want of a better word are roller coasters and minecraft.  Recently we went to a pleasure beach and the rollercoaster there had a driver, Isaac was in Heaven as he talked the ears off the poor bloke who was driving it, wanting to know how it worked, how he drove it etc etc. He watches videos on youtube of rollercoasters and plans which theme parks we can go to. At the moment his ambition is to grow to 1m40 so that he is tall enough to go on the big rollercoasters at Alton Towers.  So yes he is obsessive but his main obsessions change on a fairly regular basis, he does have smaller obsessions depending on what is happening on any particular day, for example, he was recently going on a trip to build a bear factory so he took that opportunity to research on their webpage every single bear they made, how they were made, what they did when they were made etc etc, I wonder whether that is more to do with the fact that he likes order and he likes to know what is happening than an actual obsession.

What I would urge everybody to do when they meet a family who has a child with autism, look past the diagnosis and see the child. Yes Isaac does have autism and will obviously share traits with other children with the same condition, but he is an individual, a person in his own right with his own personality and his own little ways. See the person not the diagnosis. I will always remember what one person said to me when I noted that Isaac didn't share all of the same traits that other children with autism did. When you have seen one child with autism, you have seen one child with autism. So just like neurotypical children, children with autism are ALL different. Isaac is Isaac and for that I will always feel very blessed.

Welcome to Holland!

WELCOME TO HOLLAND
I am often asked to describe the experience of raising a child with a disability - to try to help
people who have not shared that unique experience to understand it, to imagine how it would
feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You
buy a bunch of guide books and make your wonderful plans. The Coliseum. The
Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, "Welcome to
Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be
in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must
stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of
pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language.
And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've
been there for a while and you catch your breath, you look around.... and you begin to notice
that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about
what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's
where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is
a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be
free to enjoy the very special, the very lovely things ... about Holland.

Many parents who have a child with additional needs or a disability will know this piece of writing and be able to relate to it in some way.

When we first started on our autism journey, the day that autism was first mentioned to us as a possible explanation for Isaacs difficulties a friend shared this with me. I remember thinking what lovely piece of writing it was and how I could cope with being in Holland rather than Italy.  The reality however was very different for us. From the first time that Autism was mentioned as a possibitity to the actual diagnosis was 18 months, and even after that it was still unclear where this road would lead us. The lack of support and available services to help both Isaac and us was incredibly frustrating.

There were times when I would read through this piece and in particular the last few sentences telling me that Holland was a beautiful place, Holland has windmills, Holland has tulips (one of my favourite flowers) and Holland has Rembrants. Holland, it appears is a beautiful place, Holland has many incredible things that other places do not. This didn't really fit with what we were experiencing though. Watching your child having a major meltdown, and by meltdown I do not mean a mere toddler tantrum. By meltdown what I mean is extreme screaming and refusing to move, either that or running off at a speed you never thought possible from such a young child with no awareness of his owns safety, I mean hitting, biting, spitting swearing, the whole works, all with an audience of onlookers who would have their own opinions about how we should deal with this obstinate behaviour. I would often be told that he needed a good slap or that I clearly had no control over him (to be fair at that point I really didn't) I would hear the comments about what a spoilt brat he was and my heart would break. There were occasions when I would try to explain to people that he has autism and he wasn't actually misbehaving, he wasn't coping with the noise, the crowds etc but couldn't communicate that. Other times, I would just try my hardest to ignore them. The reality was, I felt like I was in a foreign country, maybe Holland but instead of enjoying the beautiful sights and the amazing culture here I was stuck in the back alleys without a guidebook to help me, I was lost and frightened and there was no one available who either could help or who wanted to.

That seems like a really bleak picture to paint and if I'm honest it was a really bleak place to be, I loved my little boy with all my heart but I couldn't help him, I didn't know how. What if just loving him wasn't enough? When I used to talk to people they would often say "Oh, but you wouldn't change him." I would smile and agree but in reality I would have changed him, not who he is, not his personality but I wanted to change the way he saw the world that was so terrifying for him, if I could just see the world through his eyes then maybe I could make that difference. I wanted out of Holland, I actually wanted back on that plane to Italy.

As time went on we fought and argued with different service providers and eventually found our own support groups and networks. We managed to navigate our way out of the back alleys, we moved away from the scary back streets and started to find our way into the more beautiful parts of Holland. We saw the Tulips in all their amazing beauty and splendour and were amazed by the windmills and how the mechanics made them work. We could finally see what an amazing place Holland was. We are still in a foreign country to all intents and purpose and just as we think we are finding our way around we find yet another new area to explore, sometimes is is beautiful and others not so much.  We have discovered that although there is not always an experienced guide to help us find our way, we can still do it, we can navigate our way around, sometimes we take a bit of a wrong turn and end up back in unknown territory but we know that if we keep walking we will find our way.

Life is a journey and it doesn't always take the path we want or would choose, never in a million years did I think that we would have a child with complex needs but we have.  Would I have chosen it? No definitely not, but am I glad we are here? Absolutely yes!! It is hard some days but oh my goodness the rewards are amazing and I can honestly say that Isaac has blessed us more than we can put into words, he is the most amazing, crazy funny little man we know. There are days when I wonder what it would be like to be back in Italy but Holland is our home and I love living here.

School.

This is Isaac on his first day at school. Isaac started school in September 2011. There were lots of preparations made to help his transition into school. As soon as the place at school was offered there were meetings to decide what needed to be in place to ensure a smooth transition.  The children were split into 2 groups, one group did mornings until 12 the first week and then afternoons until 3.15 the second week, the other group did the opposite so that only half the class were in at a time, on the 3rd week the whole class did mornings until 1.10 and then they all went full time. It was decided that it would be best for Isaac for the first 2 weeks to stick to mornings for both weeks to stop him becoming confused, then we could assess the situation and decide whether we felt he was ready to cope with the slightly longer day and then full time, it was thought that he may need a longer transition period.  As it was the first 2 weeks passed without a hitch as did the third so it was agreed that he would start full time with his peers. The week before half term was when the problems started, he was crying and screaming going into school and when he came home he would have frequent meltdowns. This, I was told was not uncommon and was likely because he was tired and ready for the half term break.

After half term things did not improve and I would frequently have to drag him into school kicking and screaming. I would struggle to get him dressed in the morning, he did not want to put his uniform on as uniform meant school and school was not something he was happy with. On the days I did manage to get his uniform on he would take it straight off and throw it in the bin declaring "I hate school!" One day, after the third or fourth time of retrieving his uniform from the bin I decided to just get him dressed into his own clothes, time was getting on and I had Alice to get to school, I didn't feel it was fair for her to be late because her brother was playing up. He was quite happy with putting his own clothes on as in his mind this meant he wasn't going to school. I hid his uniform in my bag with the intention of getting his changed when we got to school. He happily walked his sister to her class and then realised that I was heading for the front door to take him in. His mood changed in that instant, he was screaming at me, begging me to take him home. Needless to say, the trick of putting him in his own clothes only worked once and from then on we reverted to battle stations most mornings. The drive to school was interesting too, I would often be driving and have items of clothing or shoes thrown at me as he desperately tried to undress himself. On day I had forgotten to put the child lock on his door and he opened the door and tried to get out of the car as I was driving. He would attack Alice and take his frustration and fear out on her and she would often arrive at school bruised and scratched. Even when we arrived at the car park I still had the unenviable task of tring to get him out of the car, across the roads and into school.  It's hard to describe just how difficult that can be but Isaac is incredibly stong and very fast when he is in that state. I am thankful that we have a mobility buggy for him or there really is no way he would have got there. I would wrestle him into the buggy whilst trying to ignore the stares of those around me then hot foot it as fast as I could before he managed to get himself free of the buggy and try to escape.

Even though he was going into school in this state I was reassured that he was fine once he got there. That didn't ring true however as he would often descend into meltdown before we had even reached the school gates on the way home.  Pretty soon I started to dread the pick up as well as the drop off, as time went on I would be 'that parent' the one who was left standing whilst all the other children were let out so that the teacher could 'just have a quick word.'  At this poing I asked whether the paperwork was ready to be submitted to request statutory assessement. I was schocked to be told that there wasn't enough evidence and as Isaac was a bright boy it was unlikely that they would agree to assess let alone issue a statement. I couldn't believe it, here was my little boy struggling and they were telling me that there was no help for him. I raised my concern at the next CAF meeting we had and I was told that as it was the final term and Isaac would be going into year 1 things would improve. I was assured that children with ASD find the lack of structure and the amount of choice in reception difficult, it was thought that the structure in year 1 would suit him better and that things would improve.

In September 2012 Isaac started year 1 and for a few weeks things did improve, maybe they were right, maybe the structure and the work suited him better. Sadly it proved to be just a honeymoon period and soon I was back to dragging him into school and being that parent again at the end of the day. I used to go into school as a volunteer and read with children in the library area. the library area was outside Isaacs class and I could hear the noises he was making, tell tale signs that he was overloaded and needed a break. I tried speaking to his teacher who said he was fine and it was probably that he knew I was there that made him do it. One day I was in and I could hear the tell tale sounds of imminent sensory overload and then he went! I could hear his screaming and shouting, the TA walked out the classroom with a face like thunder to get the head teacher. I could hear my little boy sobbing and could do nothing, I wasn't allowed to help him, I wasn't allowed to give him that reassuring hug that he needed and it broke my heart. Shortly after that I stopped going in, I couldn't sit there and listen to that, it was just too hard. After all, I am his mum, the very person who is supposed to protect him from hurt and yet here I was taking him to the very place that was causing him such upset every day.

At my next meeting I laid it on the line, either they would be applying for the statutory assessment or I would. I didn't care whether they felt there was enough evidence or what his chances were, it was being done. School agreed to do it but told me that in their opinion it was unlikely that he would get the statement. The paperwork was submitted, now for the 26 week wait.  

During the last term of year 1 Isaacs behaviour escalated and he was spending increased periods of time outside the classroom with a TA. Although this wasn't ideal as he was missing out on teaching time it did mean he was calmer and happier and we had fewer problems trying to get him into school.  I was a little surprised then at his transition meeting for year 2 when I was told that for the first term back the school proposed to pull back his support. The reasoning behind this was that historically (the last 2 years) he had always settled well for the first half term so if expectations were set early for him then it was felt he would rise to the challenge and cope without the support.  I wasn't so sure but as I said in my previous post I am not very good at confrontation and I didn't want to rock the boat and have a negative relationship with his school so I agreed.

Before Isaac returned for the beginning of year 2 he was displaying signs of anxiety, I emailed the head teacher and she agreed that for the first few days or weeks (however long it took) Isaac could come into school via the front entrance to avoid the noise and crowds at the class doors. On the first day he came home and literally exploded, he said he didn't know how his chart worked and he couldn't find his visual time table.  I mentioned this to his teacher the following afternoon and she said that he had been absolutely fine at school and seemed perfectly happy. By the following Tuesday (Day 4) I was back to having to drag him into school, he ran out of the classroom and was pulling all the coats off the pegs and throwing them around the cloak room, the head teacher told him that if he didn't clam down she would have to ring me to come and collect him. That was definitely the wrong tactic to take because his response to that was "Good, I hate this place!" Eventually he calmed down and joined in. The following morning I took him in, he didnt kick and scream he just stood silently looking at the floor with tears rolling down his cheeks. To be honest that was way worse than the screaming. I actually felt like I had destroyed him by taking him, like he had given up,he knew that no matter how much he protested and begged I would still leave him.

That was the day, the turning poing where everything spiralled completely out of control. Ironically that was the day that Phil and I were going to look around a special school for him (although we were told at that point it was highly unlikely to be agreed to). I had a phonecall from the SENCO that morning to say that they had had a meeting and decided on a new structure to help get Isaac into school in the morning. They had spoken to him and he had said he didn't like the noise and he couldn't sit at his desk because he felt trapped. His desk was moved to a place of his choice. Things seemed to be sorting themselves out at last.

Phil and I went and looked around the school, I went in thinking that I would love it and set my heart on it but thinking that I would have to convince Phil, he has struggled to accept the whole autism thing and I think he just thought it was a phase that Isaac would grow out of.  In reality it was the other way round. Don't get me wrong, the school was great, it seemed perfect in a lot of ways but I spent our entire journey home going through every possible reason why he shouldn't go there. We arrived home to find that Isaac had totally lost control at school, he had turned table upside down in the class, thrown chairs, destroyed displays and damaged property, the rest of the children had to be vacated to the hall for their safety. Isaac had been excluded, I was devestated. I felt ashamed, like everyone was judging me and my 'naughty' little boy.  The following morning I had a meeting at school to discuss how we could help Isaac, he was put on a ladder of inclusion starting with just 1 hour a day and gradually building up if and when it was felt he could cope. I felt like I was doing a walk of shame twice a day, like all eyes were on me, everybody knew what he had done and although none of the staff made me feel that way and many of them went out of their way to tell me how sorry they were I still felt that way.  Some of the parents were not so kind however and I had to listen to them whispering about what a horrible child he was, how upset their child had become and how children like him shouldnt be allowed in school.  I honestly don't think I stopped crying for several weeks, just as I thought I had stopped I started again, I had realised at this point that heartache was an actual physical pain, not just a feeling. It was awful. I seriously considered completely removing him from school, I was watching my little boy become a shell of who he was, school was destroying him.

During this time I was thankful for the people around me who cared. I haven't spoken much about my faith and I will go into more detail another time. Needless to say that God has placed in my life some truly truly wonderful people, people who although I felt I barely knew heard about my situation and phoned me to ask could they help. People who offered to take Isaac for an afternoon so that I could get stuff done whilst he ws still on reduced hours, people who took me for coffee, listened to me, prayed with me and for me. The Sunday after Isaac was excluded from school I honestly did not want to go to Church. I don't know why, after all, Church was the one place I knew people understood, I knew no one judged but I wasn't sure I would be able to face it.  I did go though because I had told someone that I would so didn't feel I could back out. I drove there and sat in the car trying to compose myself. Eventually I got out the car and walked in, the first person that spoke to me reduced me to tears, all he had said was "Hello, I'm glad you made it." That was enough, I ran into the toilet and hoped I had managed to do so unoticed. I hadnt and soon I was surrounded by lovely people hugging me, praying for me and telling me that things would work out.  Now don't get me wrong, I know that God has a plan for each and every one of us and I know that his plans are all for good and not to harm us but just at that point I couldn't see how or why this was happening. I went into the meeting and couldn't bring myself to join in the worship, instead I stood at the back with tears rolling down my cheeks. The preach that day felt as though it was written for me. The words spoken were as though the person writing was writing specifically for my situataion, it was about endurance and finishing the race. About how in the Tour De France there is a team of people around each and every rider who help them and support them. They can't run (or ride) the race for them, but they can help, it is an endurance race, a bit like life where you cannot run it alone and if you try, you will fail. You will not complete your race. I then realised that I had a team of absolutely amazing people around me who had been place there purposely to help and if I was to get through this leg of the race then I needed each and every one of them. At the end I found myself sharing at the front what was happening and how God had spoken to me through the preach and how we just need to put our faith in him and believe that things will work out. People came up and prayed for me, told me I had been on their hearts and how they would continue to lift our family up in prayer.  I'm not going to lie to you and tell you that from there on in it was all plain sailing because it wasn't and I'm not going to lie to you and tell you there weren't times when I doubted Gods intentions because there were, several times. There were times when I couldn't bring myself to pray because it just didn't seem to help, that is when I was thankful for my Church family around me who never gave up.

The Educational pshycologist came to see Isaac and sent her report along with paediatricians and other people. I found myself ringing the Statutory assessment team regularly. I was told that the draft statement would be issued soon, I asked whether this meant that he was getting a statement and was told that in principle yes, but it could be a statement with no hours ( a notice in lieu) I was beside myself with worry, how could this happen? Isaac was permanently outside the classroom now and only just back in full time (after I refused the ladder of inclusion any more). One day I phoned up as I was told that his draft statement would be issued by a certain date and it hadn't arrived, I was told that whoever gave me that date was mistaken and shouldnt have done so. I was funing and send an e-mail to his caseworker (who I could never speak to because she was never in the office). The following day a phonecall from school telling me I needed to go and collect Isaac as he was being excluded again, unfortunately for his caseworker she rang me straight after I had taken that call and was on the recieving end of my anger and upset. She was however very lovely and agreed to set about issuing the draft statement as soon as she could, she couldn't however tell me what resources he would get as it was a panel decision and not hers although she doubted very much that it would be a zero hour statement.  A week later (in half term) the draft arrived, typically as it was half term I couldn't get hold of anyone to speak to and couldn't make head nor tail of it. After half term I was told by parent partnership that it read as though they were looking a specialist provision although it was a panel decision so we would have to wait.  I was told Isaacs statement was going to panel on 11 Dec when a decision as to where he would go to school would be made.  I found out a few days later that his statement had not been sent to the shcool we had named but it had been sent to my daughters primary and a school that we had specifically said we would not send him to especially as I had already removed my daughter from that school because of its failings.  To say I was fuming is an understatement, I rant the Statutory assessment team up and told them I would complain to the director of childrens services. The manager of the team called me back and by way of an apology told me that she would pull Isaacs case forward to be heard by the panel sitting that week. So that was it, in 2 days time we would know whether or not we would have to appeal. My little boys future was to be decided by a panel of total strangers.

So once again, being the control freak that I am, I took matters into my own hands, I rang the paediatrician who had agreed to write a letter supporting our request for specialist placment and asked her to email it to them as a matter of urgency. Thankfully she is a really lovely lady and did it straight away. I wrote a letter to the panel myself detailing our reasons for wanting specialist palcement. It was a letter from the heart in which I told them the the decision to name a special school was one of the hardest I have ever made. After all no parent 'wants' their child to go to a special school do they. We all want our children to fit into society and its norms.  I described how I felt Isaac was a square peg trying to fit into a round hole, it can be done, but in doing so you damage and break the peg and this was what was happening to my precious boy, how he needed a place where he could be Isaac and not Isaac with ASD.  That day was honestly the longest of my life as I waited and waited for news, I rang the team at 5 oclock to be told that the manager who is the only person who knows the decision was out of the office but she had promised to email me that night. By 10pm no email and I went to bed. I couldnt sleep, I was angry that she had promised to email and tormented that she knew the decision about Isaac and I didn't.  At 6 am I checked my emails to find that an email had been sent just before midnight. specialist provision had been agreed, his papers were to be sent to the school we had looked around. I think relief and reality hit me all at once. it was strange, the relief that we wouldnt have to fight any more mixed with the reality of special school was immense.

In reality I didn't feel like celebrating, I still wondered whether the special school was right for him, or even if they would take him. It is an independant school so they have their own admission criteria. He would need an assessment and that was set up for after the Christmas break. Assessment day came and despite complete gridlock on the roads we made it. I felt sick, I still didn't know whether this was the right place for him, I felt as though with the exclusions and everything else the decision had been taken out of my hands.  We stayed with Isaac for the first part of his assessment and I'm very gald we did. As we walked around the school and visited the class he would join if he was offered the place I could see that it was perfect for him, I saw other little boys just like him with their special comforters and chewy tubes. Children with head phones. Each child had a workstation and everything was so geared up to help him be an individual. We were sent off for the second part of the day and whan we returned we were met by a very excitied and enthusiastic little boy. He had completed all the tasks set and had luch with the other boys in his class. He joined in a lesson and when he was given the option at the end of the day to either play on the trampoline or join the class, he chose to join the class. This was just amazing, he had not been part of the class for almost a year and couldnt even set foot in the class without panicking, yet here he was choosing to join in.  We were told off the record that it was felt that he was perfect for the school and the school for him and that an offer letter would be sent. That official offer letter arrived 3 days later, the LA agreed, transport was sorted and 2 weeks after his visit Isaac started his new school.

So here we are, just over 2 months down the line and he is thriving, he is happy and enjoys school. So far he has had a bus trip as part of his transport project, he has been to Duxford. He has celebrated world book day where he agreed to dress up!

He has visitied build a bear workshop as part of a topic on toys. They have had a science fair in at school and a book fair. He is accessing the whole curriculum now and is in class full time, he has friends who play with him. On his first day he came home covered in mud. Isaac has never come home covered in mud and I used to listen to other parents as they told their children off for coming out of school muddy and think that I wish Isaac would come home muddy because he had been playing with other children. Now he does and it's wonderful, it is actually amazing that he gets muddy through playing with other children. He wants to go to school and got very upset one Friday because he had a hospital appointment that over ran and I didnt think he would make it back to school. Don't get me wrong, he still has his moments when he doesn't want to go but they are getting fewer and further between. Right now I feel like I have my Isaac back, he smiles much much more and several people have commented on how much happier he seems.

It was a heck of a fight and a long journey to get him into the right school, there were times when I felt like giving up, when it all became too much but I am so glad I carried on fighting. To see him happy and thriving at school is just amazing and as hard as it was, I would do it all again if I had to.

Our Journey So Far

This is Isaac, my beautiful precious little man. Isaac turns 7 this month. Isaac has autism (and several other co-morbid diagnosis which I won't bore you with).

Isaac was born 18 April 2007 on his Uncle's 33rd Birhtday, I was absolutely determined that he would not share a birthday with anyone but he clearly had other ideas and made his entrance into the world rather dramatically on that day.

Whilst I was pregnant with Isaac I worried how I would manage another child, we already had 3 children and if I'm honest, having a 4th was not on our agend, once this initial shock wore off we actually became quite excited about his arrival.  I joked throughout my pregnancy that we would be so laid back with this baby that we would would not even realise we had him, after all, there is no shock in the world like having your first child, all the rosy ideas you had about how perfect life as a parent would be soon disappeared as you walked around in a sleep deprived haze. Having a second child was as much of a shock, I thought I knew what I was doing and then quickly realised that juggling the demands of a newborn baby with the demands of a 3 year old who decided that sharing his parents was not something he was keen on was no easy task.  By the time we decided to have number 3 I had resigned myself to the fact that I clearly knew nothing about babies except that they had their own agendas and would not willingly fit into any routine that you had planned for them! Thankfully, Alice (baby no 3) was a chilled out, happy baby who just slotted perfectly into place, hence my misconception that things would be the same with Isaac when he arrived.

Even as a very tiny baby I remember having a nag in my mind that something wasn't quite right, I mentioned to my health visitor when Isaac was 2 weeks old that he didn't look at me when I fed him, infact he would actively move his eyes away when I looked at him. At his 6 week check I mentioned that he seemed very unsettled and cried a lot, however, I wasn't concerned as I knew from having Megan that some babies did cry.  The difference here was that Megan cried until she was picked up and if we did go out and she was in the pram she would eventually settle with the motion of the pram and sleep. Isaac on the other hand just cried, he cried if he was in his chair, he cried in his pram, he cried in his car seat, he just cried, nothing it seemed would settle him.Eventually he settled into some sort of routine and although he still cried alot, once he learnt to sit up he seemed happier.  He wasn't interested in his toys, they seemed to make him very agitated, he would sit for ages twisting his little hands in circles in front of his face watching them as they went round and round. He did smile, and when he smiled I was amazed by how stunningly beautiful he was, with his light blond hair and huge bright blue eyes. Those smiles though were not for me, they were at objects, rarely people. Isaac didn't babble as such, there was no 'ma ma ma ma' or 'da da da da' instead he mimicked what I said, for example, when I changed his nappy I would repeatedly say 'IsaacIsaacIsaac' and he would repaeat similar back to me.

When I took him for his 8-10 month development check I mentioned these things and also the fact that he was not attempting to get around either by commando crawling or proper crawling, he didn't roll over either, I was told not to worry about it. Isaac crawled the week before his first birthday but by 18 months was showing no signs or walking.  We were referred to the community paediatrician and Isaac was diagnosed with having hypermobile joints, this was the reason that his motor skills were delayed.  6 months later at a review it was noted that Isaac had a much larger than average head circumference, when he was born his head size was average, now it was above the 98 centile, we later discovered that this can be a feature of autism.  At that visit I mentioned that Isaac seemed generally very clumsy, he would trip over nothing and walk into things. When he fell over he had difficulty getting himself back up off the floor and woudl either crawl over to something to pull himself up on, if there was nothing available he would roll on to his tummy, get on all fours and then walk his hands up his legs until he reached a standing position, this is called the Gowers manoeuver and is an indicator of Muscular dystrophy, Isaac was tested for Muscular dystrophy, I felt numb, I didn't really know much about it except that it was life limiting and I couldn't even think about my precious boy having something so devestating. I prayed and cried "Please God, anything but that, not my baby, not my precious boy." My prayer was answered and thankfully the tests all came back negative. 

As time went on Isaac didn't seem to be developing in the the way his older brother and sisters had, he didn't play, he loved his trains, he loved them a lot, infact they were all he was interested in, but he didnt play with them, he lined them up, always in the same order and if one was moved he would get cross, and by cross what I mean is that he would throw every single one of them around in temper. He would watch the same epidsode of Mickey mouse clubhouse over and over and over again and get upset if we put another episode on for him then he would walk around the house reciting the script from the episode word for word. He walked on his toes, he flapped his hands, he licked people and objects and was obsessive about his routine. Nothing, and I mean nothing could change without his having a huge tantrum that would last well over and hour, which is pretty exhausting. When he was having one of his tantrums he would seem to develop a super human strength, he could lift and throw things that would be impossible for a 2 1/2 year old.  Potty training was out of the question,if I even tried to put a pair of pants on him he would scream like I was killing him, he pulled and scratched at his skin where they touched and trying to get him to sit on a potty or the toilet was like mission impossible.

All these concerns I metioned at his next review, that was the first time the word autsim was mentioned. Isaac was apparently showing some autistic traits and the paediatrician referred us to the early years support team so that further investigations could be carried out. At that point, my only knowledge of autsim was having watched rainman (not a lot then) and that was not my son. As I sat in the consulting room I politely agreed with the paediatrician but decided he was clearly wrong. I went home from that appointment and spent hours which turned into days on the internet, researching and reading so that I could prove he was wrong, turned out that the more I read, the more I could see Isaac.  I joined an ASD forum and posted numerous questions about him, all came back with the same answer which all pointed to him having autism. It suddlenly hit my, my precious boy could have autsim. I was absolutely devestated and terrified, what would life hold for him?

Then followed 18 months of appointments and assessments, meetings where everybody sat round a table discussing our little boy as though we weren't sat there. During that time opinions changed, he could have autism, he doesn't have autism, all manner of explanations were given for his difficulties. He is the youngest of 4 he hasn't had enough attention, He is the oldest of 4 he has too much attention, he is babied too much. All toddlers go through this phase (funny that because none of my others did), I think you are seeing things that are not there, boys are different to girls (No Really!!!). I think the most upsetting one for me was when I was told to go and see my GP and sort my own mental health out! At this point I didn't know what to think, was it me? Was I imagining it all? Was it my fault for those early months of pregnacy worrying about whether I would manage another child? Was this all in my head?  Speaking to other parents I realised that many of them had been put through this too and I decided from that point that whilst I still had breath in my body I would fight for my little man. I became more assertive, aked more questions, stopped agreeing with what everybody else said and started to demand answers, I was actually fighting to get a diagnosis for Isaac.

That diagnosis arrived a week before he turned 4, no frills, no breaking it gently to me. After a lengthy appointment at our home the paediatrician turned to me and said that it was quite clear that Isaacs difficulties fell within the autistic spectrum, however he was quite complex because he had several other things going on. He also has motor planning problems, hyper mobility, sensory processing disorder and emand avoidanc characteristics. I was actually relieved and oddly very pleased, I phoned Phil and was literally celebrating as I told him that our son had autism, it was very surreal, I mean who is happy about that? That feeling of elation lasted all of 2 days until the official letter arrived through the post and I saw the words in black and white, those words floored me, I felt like I had been hit by a steam train, I cried like my heart would break, infact my heart was broken. For a long time I couldnt look back at pictures of Isaac as a baby, he looked so perfect, so, normal for want of a better word.

Eventually I stopped feeling sorry for myself and realised that he was perfect, he was still my Isaac, my beautiful little man. 

Three years down the line and it has been a huge roller coaster of emotions, the highs have been amazing and the lows have been lower than I ever thought possible but we have learnt so much.  We have learnt that life takes a different pace now, there are days when it feels as though we are travelling at 100 mph and other times when it is so frustratingly slow, we have learnt that what seem like small steps are actually huge milestones.  I can still remember the very first time he waved and said goodbye to another child, yes I cried but they were tears of sheer joy at what he had achieved, I honestly can't remember at what age my other children did this, not because it's not important but because it is something that they just did, it's not that we took it for granted it is that we never realised how amazing it was. We started to look at the positives and not just the negatives and we found out that the positives and the achievements outweighed the hard bits.

So here we are today, there are still days when it hits me all over agan and I cry like my heart will break all over again but then I pick myself up and realise how incredibly blessed I am to have a happy, healthy, stunningly beautiful little boy.  Isaac now attends a special school for children with autism (I will write another post about that journey soon) and I now see his future filled with hope, it is no longer something I dread or worry about (well most of the time anyway), he is flourinshing there, he is loving school for the first time and he doesn't have to fit in there, he can be exactly who he is and that is Isaac.