Dear Professional

As most of you will know, if you have a child with additional needs, you will also have numerous medical appointments and reviews. Over the years since Isaac was 'on the radar' of the health professionals I have lost count of the amount of appointments we have had.  These appointments inevitably do not always focus on the positive. As you will know, if you want to access any kind of service, you need to justify needing it by focussing on the difficulties your child has and what they are struggling with at that particular time.

I always like to think that I try to outweigh any struggles by looking at how far Isaac has come and how far we have come as a family. In reality though, that doesn't always happen.

Right from when I received the very first report ever sent which detailed his delay in motor skills and poor co-ordination I made a conscious effort to replace any negative observations with a positive one. For example, his first report detailed how, at almost 20 months, Isaac was still not independently walking or even attempting to. My thought process on that, was that it was OK that he wasn't walking, but he was crawling, and it the few weeks prior to that report arriving on my doorstep, he had leant to cruise around the furniture. That thought process helped me remain focussed that whilst he was not doing things that children of his age typically were, he was, nonetheless making progress, and progress was good. It also helped on the days when I was feeling a bit low about things, it helped me to focus on the positive not the negative.

As time has gone on we have so many reports that I now have 2 lever arch files full of the. The latest report arrived this week. The appointment was not particularly successful as Isaac was not particularly compliant on the day.  To put it brutally honestly, Isaac is never compliant on these days as he doesn't like Drs, he doesn't like the interruption to his routine and most of all, he hates being late. He is obsessed with time, so, if his appointment is due at 11 o'clock, then he gets called in at 11.45, it is never going to go down well. That is exactly what happened with the most recent appointment. 45 minutes after his scheduled time we were called in.  Isaac had been pacing up and down the waiting room getting crosser and crosser. He then sat down and announced that the paediatrician had precisely 1 minute to call him and then he was leaving. With that he proceeded to count back from 60. Now when Isaac starts counting, he means business and if he had got to zero, he would have been off and there would have been very little anyone could do to persuade him otherwise. Thankfully, with about 19 seconds to spare she called us. Isaac told her in no uncertain terms that she was lucky he was still there and then asked if she could tell the time. He then refused to take part in the consultation at all and sat in silence.

So all this leads me to what gets written in all the reports and then sent to me and everyone else involved with Isaac. I know and fully appreciate that the reports written are the clinicians observations and have to be a true reflection of the consultation but that makes me sad because you don't get to see Isaac. What they don't do is give a picture of Isaac and who he is. So, I thought I would write this letter so you can see all the things that get missed. The little things you don't see.

Dear Dr..........

You always write to me to send me reports from any appointment, you make your observations as best you can in the limited time available.  Obviously Isaac is not your only patient of the day, you quite probably have several (too many maybe) to get through all with children similar to him. 

I often read your reports and, after making a mental note of what was written, file them away in the folders with all the other reports I have for my son.  I make an effort to balance everything out. So if something is written that is not necessarily positive, then I will remind myself of the progress he has made to re focus my thoughts.  One particular example could be when it was written that "Isaac struggled to grip a pencil and copy a simple shape" This was when he had been at school only a few months. I turned this around to "Isaac can now grip and control a pencil." Which is something he could not do just a few months earlier.  I reminded myself of the progress made and was happy with that.  

I know that reports are written and used should we need to access funding or services, so they have to be written exactly how it is, they cannot focus on what Isaac can do, they have to focus on what he cannot or he wouldn't get the appropriate help. I accept all of this and up until now have been very good at not seeing the negatives in this. It is a necessary evil, part of the process and to achieve the desired result, that is the way it needs to be.

However, just last week Isaacs latest report landed on my doormat. I sighed as I opened it, (like I always do), then I opened it and began to read.  I'll admit that initially I laughed out loud as I read the words.  "Isaac continues to be a difficult child to parent. He was clearly annoyed at having been kept waiting and told me I had called him in with under a minute to go before he was leaving............ He did not engage further in the consultation."  I laughed because thinking back to sitting in the waiting room, you had 20 seconds or so to call him before he was leaving, and believe me, he would have gone.  He is very obsessed with time and once he starts counting seconds, he means business.

Once I stopped laughing though, it actually made me really sad. You see, this is how you view my child, my precious little boy. A 'difficult to parent child.'  He's really not though. You saw him at a bad time. You were 45 minutes late.  45 minutes he had sat in that waiting room with no update as to when he would be called. 45 minutes of him being somewhere that always elevates his anxiety, he doesn't much like Drs, they talk to him, ask him questions that make him feel uncomfortable, talk about him as though he wasn't there. Sometimes Drs even hurt him. Not intentionally of course, but he needed blood tests and other procedures which are always more traumatic for him than your neurotypical child. That is why he was annoyed, he was anxious. The longer you kept him waiting, the more that anxiety had a grip on him, after a while it grips so hard that it cripples him.

So many times it has been written that Isaac continues to be rigid and inflexible. Isaac continues to struggle with most aspects of life. Isaac is unable to engage on many activities etc etc. This is all true. But, it is not who he is. That is his autism and all the many co morbids and difficulties that come with it, that is not Isaac.

So who is Isaac?  This is Isaac. Isaac is my beautiful, funny, kind and loving little boy.  What you don't see is his unique sense of humour. That boy never fails to make me smile in the things he says. He doesn't always realise he is being funny.  One day he was talking non stop. You would see this as being unable to engage in a 2 way conversation and being unaware of his audience. I see it as he's excited and enthusiastic and he absolutely has to share that with me.  I did ask him if he could take a breath and stop talking just for a minute. His reply, " I can't mummy, it's part of my charm." And do you know something? He's right, it is part of his charm.

You didn't see him this week when I was ill. I was feeling really unwell and was laid on the sofa shivering, you didn't see him come up to me and gently kiss me and say, "Poor Mummy." You didn't see him go upstairs, get a blanket and bring it down and cover me to keep me warm and give me one of his best teddies to cuddle to "Make you feel better Mummy." You see, he cares, he has empathy, it may be learnt, he may be echoing what he hears me say and copying what he sees the others do, it may be learnt and scripted, but he cares, my boy really cares.

You didn't see the time he won a big bucket of sweets and the first thing he did was to give one to his sister and his daddy. Okay, they had to ask could they please have one, but there was no hesitation, no needing to explain to him that it was kind to share, he did it, he shared. Yes, again, this is learnt, something we have spent a lot of time and social stories teaching, but he knows. Despite us having to teach him all this, he knows, and despite us needing to gently remind him, he is kind and he will share.

You see his anxiety, that cripples him. It grabs hold of him and physically grips him and stops him from enjoying things. What you don't see is his sheer determination to overcome that anxiety, you don't see his tears and his frustration as he battles to overcome that anxiety and more importantly, you don't see the triumph and the celebrations or feel his pride on the occasions he does manage to overcome it. Recently we were on holiday and had planned to take a trip on the jurassic skyline. This travels about 53feet into the air and then rotates 360 degrees to give a stunning view of the jurassic coastline. Isaac was beyond exited about this and in true Isaac style had viewed numerous youtube videos so he knew all about it.  The day came for the trip and as we approached the tower, the anxiety gremlin jumped in to do it's thing. The tell tale signs of hand wringing and constant questions all beginning "What if........" started. Despite lots of reassurances, by the time we arrived the anxiety had its grip on him, he was battling between his desperately wanting to go and the fear that was gripping him and preventing him. There were tears, screaming, crying etc. I told Isaac that we wouldn't go on, it was fine and not to worry. But he knew despite everything that he wanted to go.  He couldn't though, the fear had gripped and paralysed him and he started to sob, then he got angry with himself because he thought he had failed.  Thankfully, some wonderful members of staff came and chatted to him, they talked through his fears, took him outside so he could watch his Dad and sisters on the tower and talked him through exactly what was happening at every stage. They calmed him down enough for him to gain control of the anxiety and then promised to ride with him. That enabled him to have his trip and the pride he (and all of the rest of us) felt when he managed to overcome his anxiety and enjoy the trip was immense.  So you see, his 'stubborness' you often refer to in your reports is a good thing, its a tool he can use to help.

You don't see the awe and wonder as he 'lost himself' in a meadow of long grass and daisies.  How he walked through safe in the knowledge that he could be exactly who he is whilst he was there. He could examine every daisy in detail and tell me how each one differed from the last, he could smell all the different smells that you and I miss, he can see the grass seeds and the damsel flys in such acute detail in a way that you and I don't. He can recall what is the same and what is different from the last time he visited that particular meadow.

You don't get to know that he knows more facts about roller coasters than you or I ever could. He can tell you which roller coaster has which loop the loops, which is a pulley roller coaster and which uses cars. Which ones travel at however many miles an hour they travel at and how they work. He sees that detail in things, we miss all that. 

You see him angry and uncooperative because your clinic was running late ( I know, it can't be helped, you are not allocated enough time for each patient to be able to give them all the time you would like and they need). But what you don't see is a little boy who could tell the time from the age of 4. Who knew what 5 minutes looked like on a clock and how many seconds were in a minute. How many 4 year olds can do that. He's amazing really when you think of it.

So you see, beyond all the difficulties that Isaac has, he has many more strengths and qualities. You tell me that he doesn't see the world the same way that we do, but actually, turn that around. We don't see the world in the same way that he does. We don't see things or hear things, or smell things in the same way he does, but when you think about it, maybe we are the ones that are missing out, not Isaac.  He has overcome more mountains than you or I will ever have to in his short life so far and no doubt he will over come many more. Instead of seeing how he struggles, spend a moment to see Isaac and not patient number......, number 4 on your list for that day, another child with autism who needs help but your limited time and cuts to services mean you and he cannot always access.

I know you have to write your reports in the way they are written, but this is my letter to you, so that you can see my precious child as I do and not a 'difficult to parent, unhappy, depressed, anxious, rigid, set in his ways' little boy.

All the best.

Isaacs Mum xx

The Steam train effect.

Life is a journey, it has its highs and lows and if I'm honest, I don't think anyone has a 'normal' life. What is normal anyway? The set of circumstances in which we live are our 'normal'. So this means that my 'normal' life is very different from somebody elses. We all have times in our lives where the going gets tough for one reason or another. There can be times where it seems as though you go from one rough patch to another, but that is life. It is what makes us who we are. We can deal with these circumstances either by feeling sorry for ourselves and looking for others to bestow their pity on us, or we can deal with them as best we can whilst trying to keep positive (even when we don't feel like it).

So for us, normal life is navigating the ups and downs that living with a child with autism brings. That is our normality. We embrace the challenges, not always willingly, but we do. We celebrate every success and learn from the mistakes that we make along the way.

There are times though that I have what I call the steam train effect. That is where the enormity of the situation we live with hits me like a steam train. It's where the grief of the diagnosis hits me all over again leaving me feeling like I've been hit by a steam train.  Right now I'm in the middle of a steam train moment.  It's the end of term, which for us brings its own challenges. The lack of structure, the anxiety about the change of routine and the reality that no matter how much I would like to plan to do over the holidays, we are unlikely to be able to do too much because Isaac will not cope.

Just now, facebook is full of people posting photos of their children 'graduating' from either infant school or juniors, ready to make the transition to the new school. There are heartfelt posts from parents as they attend leavers assemblies and bid farewell to their childs school and look forward to the next stage.  Today, I feel robbed of that. Today I feel really upset that this is something that I will not get to do with Isaac. Now don't get me wrong, I absolutely know 100% that he is in absolutely the best school. I know that in his school he will thrive, his school have taught and will continue to teach him in ways that just could not happen elsewhere. His school believe in him, they believe that he will succeed and have helped Isaac to do that too. But I still feel cheated.  I feel sad that I got to watch my older 3 children 'graduate' from infant school, I cried at their leavers assembly along with the other parents as we marvelled at how much our children had grown.  I never got to do that with Isaac, I didn't get to take photos of him in the school hall wearing his graduation hat like all the other children.  I had been a parent at that school for almost 13 years and whilst it didn't hit me last year (which was when all his peer group moved to juniors), it has hit me now and it hurts, I feel robbed of that experience with him.  It's really hard to describe why I feel this way, especially when as I've said, he is definitely in the best place. I guess grief hits us when we least expect it to.

School holidays bring with them their own set of challenges.  Isaac needs structure, he doesn't like not knowing what is happening, it makes him feel very out of control and that is when the challenging behaviour and anxiety kick in.  At school Isaacs days are very structured, he has visual timetables and knows exactly what is happening and when. This, I think, helps him to feel secure.The problem is that we can't structure the holidays in the same way his days can be structured at school.  It is difficult for us to just decide one day that we will go out and do something. Firstly this is because Isaac does not do spontaneous, secondly, because as Isaac gets older, going out for days is actually becoming more and more difficult.  Most days out (whether organised or not) usually end with us having to leave earlier than planned because Isaac isn't coping or has descended into complete meltdown.  This brings me on to the subject of respite.  We get something called short breaks funding for Isaac. This is where Isaac is allocated a sum of money and we can access services such as holiday clubs, employ a personal assistant to take Isaac out or use it to pay for a 1-1 for Isaac to access activities he may not be able to otherwise.  We use Isaacs short breaks to fund a place at a holiday club, we have 2 days per week for 2 weeks at Easter and 2 days per week for 4 weeks in the summer.  It is a very structured timetable so it works well for him.  

I have been subjected to critisism by some people because of this.  Some people have said that you choose to have a child no matter what.  I wholeheartedly agree, I really do. I chose to have a child, in fact, I chose to have 4. I chose to have them no matter what. I chose to have a child and knew that I would lay down my life for each and every one of them.  I chose not to have any ante-natal testing because I knew that it would make no difference, no matter what.  However, my older children did not.  They did not choose never to be able to have friends over after school for play dates because their brother could not cope. They didn't choose to have virtually every day out cut short because their brother does not cope with it. That is why I chose to accept the respite when it was offered.  It was a difficult decision and the guilt I felt at accepting it was huge.  Here I was putting my child, my extremely vulnerable child, into someone elses care. I honestly felt as though I was abandoning him.

What accepting respite does is gives Isaacs older siblings a break. It means that for those 12 days, yes 12 days out of 365, they can have friends over, we can go out for a picnic or to a park or museum without having to cut our time short and deal with the explosive consequences of complete sensory overload. Even so, the steam train effect is there.  It hits me that actually I don't want to have to send my child to a holiday club to allow us to go out for a day, I want him with me, I want to be out together as a family. Without Isaac there, there is always a part of that family missing.  If and when I do start to feel guilty, I remind myself that those 12 days a year are the only break my children get.  We are not fortunate enough to have family that will take Isaac, it is the only break we get. In most other families, grandparents etc will take the grandchildren for a day and sometimes even a night or weekend. We don't have that, so I put it into perspective and know that I am doing this for my other children.  It still doesn't stop it hitting me, but I can at least reason that it is a good thing.

As I said in my opening paragraph, there is no such thing as normality, normality is the set of circumstances we live with and that can change from year to year. I'm not sure why but I have never really seen Isaac as being as extreme as some children with autism. Maybe it is because we had such a long road to diagnosis with him during which we were told at one appointment he likely had autism and at the next we were told there was nothing wrong.  I've always felt that Isaac was never quite 'autistic enough'.  I don't know if that makes sense so I will try to explain.  At 3 years old we were sent to a speech therapy group that concentrated on communication as much as speech itself.  Isaac did not ever have a speech delay. His speech was slower to develop than his siblings, but there was no delay as such.  His social communication is the problem.  At the speech therapy group, I never felt he fitted in, most of the children were either completely non-verbal or had very little functional speech.  We were discharged from the group after only a few sessions.  We attended special needs toddler groups, but again, some of the children at the groups were severely disabled or had no speech. So although these were groups recommended to us by his paediatrician, I never quite felt that Isaac fitted in.

It wasn't until Isaac started school and got a little older that his difficulties became more and more apparent.  Still though I didn't feel he fitted into the 'autistic child' category particularly well. I was even told by his paediatrician at his diagnosis that he was 'very high functioning' and unlikely to need very much support in school.  All this led me to think that maybe Isaac wasn't on the autism spectrum, maybe he was just a little quirky.  However as time went on in school it became more and more obvious that he wasn't just going to cope. He wasn't coping with full time 1-1 support and sometimes 2-1 support.  His difficulties started to be described as severe and complex, which, if I'm honest is still not something I have accepted.  It is not until we go on days out, or I see him with other children at his school that I realise that he really is 'very autistic'.  There it comes again, that steam train, knocking me down and totally flooring me because I realise that my life is far from 'normal' whatever 'normal' is.

There are many things that frustrate me about the steam train effect.  I hate that when it hits me, it hits me all over again and it feels as raw as it did the first time. I'm not sure that, that will ever stop.  Maybe I haven't fully accepted Isaacs diagnosis yet, I don't know.

Maybe part of the hitting all over again is down to the fact that for a long time we were led to believe that there was really not a lot that gave anyone (apart from us) any cause for concern.  Maybe it's because, as I have said in a previous blog, there is no specific look or genetic test to tell me what my childs diagnosis is. Maybe there will always be that element of doubt in my mind.  Maybe as a nation we need to be more accepting of the whole invisible disability. Maybe my acceptance will truly happen when others does too. I have lost count of the amount of people that ask me whether it was a good idea to put Isaac in to a special school.  Firstly, I can honestly say with my hand on my heart that it was absolutely the best thing we did for him. It was not an easy decision to make and I cried many tears and had many doubts about it. Secondly, the decision was kind of out of our hands. Isaac had been excluded from mainstream several times, he was never in the class and he simply could not cope with being there.  Often others have told me that by putting him in a special school he will never learn to behave normally. That putting him in an ASD specific school will actually teach him to be more autistic.  Just to clarify, Isaac seriously does not need to be taught to be more autistic, he does it quite well enough on his own.  Also, his 'autistic' behaviours are actually less with him being at the school he is in because his anxiety levels are lower and he is not in a constant state of overload.  He is with people who understand when he needs space and when he needs to be encouraged.  We wouldn't say to a parent of a child with downs syndrome or cerebal palsy that letting their child mix or go to school with children with the same diagnosis would teach them to take of more of the traits of that condition, so why with autsim? 

Autism is a lifelong disability, it is something that Isaac will have for the rest of his life in the same way that any other lifelong disability affects a person who has it.  It is not something he will grow out of or be cured of by mixing with people who are neurotypical.  This is something that hits me like a steam train on a fairly regular basis but especially at holiday times or significant  events. So if you see me walking around looking like I've been run over by a steam train, that is quite probably because that is how I feel at that moment. That and the fact that I've had probably 2 full nights sleep in the last 8 years.

This has turned into a bit of a heavy post.  I use this blog as a kind of therapy to get it out of my system. It helps a lot and I can assure you that I am positive and hopeful for Isaacs future, but sometimes reality kicks in too and that is when I come here to vent. I will leave you with a bit of humour which, at times, describes how I feel (but also makes me laugh).

Acceptance.

Any parent of a child with additional needs will tell you that they want acceptance. Acceptance for their child. We want people to be educated about whatever condition or disability our child has and for people to accept them as they are. We want understanding about why our children behave the way they do and we would like allowances to be made for them.  This is particularly true for the group of parents who have children with 'invisible disabilities'. I have said before in a previous post that at times I feel cheated, I feel cheated because there is no specific test that will 100% confirm my sons diagnosis, his particular condition has no physical features that tell the outside world that he has autism.  This means that when we are out and things get a bit challenging, people look and at times make comments about his behaviour. This is happening more the older he gets. It's understandable really, I mean when you see a toddler having a tantrum in the park or at the supermarket you think of it as the terrible twos. When you see a particularly tall 8 year old doing the same you could be forgiven for thinking that the child in question is just being spoilt.  Obviously seeing the way a parent deals with these behaviours can just confirm that view.  For example; Isaac knows it is not acceptable to hit another child, he is a gentle and kind little boy who would never dream of actually hitting someone or wanting to hurt them on purpose. However, when he is overloaded or about to meltdown that changes, he will lash out and hit (and worse) people.  When this happens I will remove him from the situation (usually whilst being kicked, hit, spat at and sworn at) whilst repeating to him that it is not acceptable for him to hit people. I explain to him that it is ok for him to be angry but it is never ok for him to hurt people. I will not ever tell him that he has to apologise at this point. Why? Because if I tried it would just escalate the situation. At this point he doesn't understand what he has done or why, he is completely out of control of the situation and is not able to reason.  Once he is calm we will talk about what happened. A lot of the time he cannot remember what he has done so I explain to him what happened.  Often he gets very upset, especially when he is told he hurt someone.  At this point I will ask him what he thinks he should do, this is when, 9 times out of 10 he will ask to say sorry.  Unfortunately this can happen anything from 10 mins to a good few hours after the event.  Obviously for a parent of a child who has been hurt by him it can seem as though I am doing nothing by removing him and not forcing an apology there and then.  The problem is, that unlike most children Isaac will not say sorry if he is not. Most children will realise that saying sorry will end the situation, Isaac will not. To him it is not just a word, it is a feeling and if he is not sorry he will not say it.

I always try, if there is an opportunity, to explain to the child or parent involved that Isaac has autism and finds situations difficult, if we are still in the place and the other party are there when he has calmed down then he will always ask me to go with him and say sorry but I can see how others might think we are letting him get away with it at times.  One thing you can always be sure of, if Isaac says sorry to you then he is genuinely sorry, he really means it, it is sincere and definitely how he feels.

Acceptance, I have found, isn't just about others accepting Isaac being the way he is, it is about me accepting it too. Acceptance isn't something that happens, it takes time, years and years and if I'm honest, I'm not completely there yet.  It's like this. The day Isaac was diagnosed, the day those words were first told to me is a day that will stick with me forever. As the paediatrician sat in my lounge, she said to me, "It is clear to me that Isaac is on the autistic spectrum." And that was that, simple and plain, no dressing it up, no "I'm sorry", just that.  I don't remember my exact response but I clearly remember thinking ' Well thank goodness for that!' It was a relief, we had been under the care of paediatricians, speech and language therapists, occupational therapists and physiotherapists since Isaac was 18 months old, and here we were, exactly 1 week before his 4th birthday finally having a diagnosis, an answer for all our questions.  I thought I accepted it, I thought at that point that we could move forward with no more questions. I was wrong.  Isaac looks 'normal', he doesn't look as though anything is wrong with him and if I'm honest, there are not many days go by where I don't question that diagnosis.  What if everybody is wrong, what if it is just how he is, not autism at all.  It is times like this where it will hit me like a tonne of bricks.  I will see something on television, or read a post on the internet written by a parent who has a child with autism and it will describe my life or Isaac to a tee. That's when it hits me, that's when the words 'He has autism, he actually has autism' scream around my head, that is when I realise that acceptance is something that develops over many many years and that I am still not there.
Posts such as this one that reduce me to tears because I realise that this is me and that Isaac is very definitely autistic http://themighty.com/2015/02/i-am-that-parent/
I am that parent and Isaac is that child. When I read things like this I realise that it does still hurt, it hurts a lot. I was watching a program on television called Born Naughty? On this particular episode there was a 9 year old boy who reminded me so much of Isaac. At the end all the professionals were sat in a room discussing him and saying how he was on the autistic spectrum.  They asked each other the question "Are the parents ready to hear this?" When the parents were told they were relieved to hear it.  That made me feel very emotional as I completely relate to that, I also know that give it a few days and they will be in pieces as the reality kicks in. I have heard this from so many parents who have children with autism, the initial diagnosis brings relief, most parents have been through months or years of seeing various health professionals, been told to give it time, see how he develops, lots of children do this. Many have been told that they would benefit from parenting classes and even started to question themselves as to whether they are the cause of their childs difficulties.  That relief is often short lived as the reality of what having a child with autism means, it is a long road to acceptance and their are many hurdles along the way, hurdles which I trip over frequently.

As a parent I have to accept that life will not ever be the way it was. Most of the time I don't really pay much attention to that because life is just the way it is. I have to accept that if we go for a day out Isaacs attention span is short and he wants to move on frequently. Visiting a museum, he knew exactly what it was he wanted to see (giant spider fossil) and then he wanted to go. He coped with a few extra moments of being there so that his sister could look around at a few things but then he gets overloaded, he cannot see outside his box. He was going to look at the giant fossil, he had seen it and therefore he saw no point in staying. That is hard to accept, how hard is it for him to understand that he is not the only person, he has a sister who wanted to see everything but that wasn't possible. She actually accepted it better than I did. She accepted it because I promised to bring her back when he is at respite in the holidays and it will just be her. That's another thing that is tough to accept, that I have to put my son into respite so that I can spend time with her doing the things she wants, that every day out we have HAS to revolve around Isaacs needs.

There are times when I have to admit, I don't want to accept it. During school holidays it is tough. We have had to accept that we can no longer do all the things we would like to or that we used to do.  An outing today has ended up with Isaac having the mother of all meltdowns and screaming that he wants to kill his sister. There is no reason for this other than that she was playing a game and he didn't feel it was fair. He wanted the game playing his way, with his rules. Isaac is very rigid in his thinking and no amount of diplomatically suggesting rules which stray from what he thinks the rules should be is acceptable.  I blame myself for this meltdown because I did see it coming but thought that maybe this once we could try not to leave the place we were immediately. That was a huge fail on my part because by the time I did decide we needed to leave Isaac refused. That meant me having to walk him out, he then escaped my hold and ran off straight into a road. Thankfully not a busy road but still a road.  I need to accept that sometimes we just cannot do the things we want to because it is simply too much for him to cope with and I don't want to accept that. Just once I would like a day where we can just do what we would like without fear of meltdown.

 

I need to accept that although Isaac is coming on in leaps and bounds, he is still very much locked in his own world.  He likes to be on his own doing his own thing. We recently went for a walk in a meadow. Isaac strolled off into the long grass, stopping occasionally to pick a buttercup or a piece of grass and spend time examining it. He stood gazing around him, not looking back at me, just watching the clouds, the trees and the grass swaying in the breeze. When it was time to leave I asked if he liked the meadow. Isaac told me he loved it, he said it was peaceful and quiet and somewhere he could be himself in his own world. He told me his head was always so full of stuff that makes him dizzy and gives him a headache, but that in the meadow he could just relax.  He then told me he would like me to buy him his own meadow!  Hearing this gave me a few different feelings. Firstly I was amazed that he was able to explain exactly how he was feeling and how he often feels that things are too much for him. Secondly, it upset me a bit, the realisation that no matter how hard we work and how much we do to help him, he will always find most aspects of life difficult.  That is something that is hard to accept. As a parent we want to prepare our child for the world and life but whilst I do accept that Isaac struggles now, it is a whole different ball game to accept that there is a good chance that he will struggle for the rest of his life.

As well as autism Isaac has several other co-morbid diagnosis, one of which is hypermobility and low muscle tone, we have been told this is more than likely down to a connective tissue disorder called Ehlers Danlos Syndrome type 3.  Whilst Isaac is able to walk, and on somedays he can walk a fair distance, there are other days that he struggles to walk to the end of the road.  At the age of 3 he was referred to wheelchair services and given a specialist pushchair for older children.  Now he is older and has grown out of the buggy we have had to go back to wheelchair services.  Isaac was given the option of what he would like, he had the choice of either a larger buggy (which I preferred) or a childrens wheelchair.  Isaac chose the wheelchair. He doesn't want to be in a buggy, buggies are for babies according to him.  I understand totally where he is coming from and had to let him choose. I, however am not ready to accept that my child will be a wheelchair user.  His wheelchair should be arriving in the next few weeks and he is very excited about it, he has chosen a blue frame and spider spoke guards. I feel sick at the thought of having to push him around in it when he is unable to walk.  I'm trying very hard to accept that at the end of the day it will make our life easier and it is no different to push him around in a wheelchair than it is to push an 8 year old around in an oversized buggy but I am struggling to accept that this is how it is.

I guess at the end of the day, when parents of children with disabilities and additional needs (and I still struggle to put myself into that category) ask for acceptance, what we are saying is that not only so we want acceptance for our children and how they are but also that we need help with the whole journey of acceptance. As soon as we feel like we have accepted our childs diagnosis or condition something can come along and trip us up and we have to start over again. I think for me it is going to be a lifelong journey.  

I'm hoping that this makes sense. I'm not saying I don't accept Isaac for who he is, I do. What I'm trying to say is that each hurdle that we face means a whole new journey of acceptance and that is not always easy. Please be patient with us as well as our children.

A Year down the line.

It is a year since I started this blog. It has been a year of many ups and downs, some of which I have shared in my blog, others which I have not.  I hope for those of you that read it, it has given a small insight of what life can be like.

My post today is not one I ever imagined writing. It is a hard one for me to write for many reasons. Today I am not writing about Isaac, today I am writing about Alice.

This is Alice, Isaacs older sister. Alice is 10.  Alice has always been my happy go lucky, chilled out little lady. She has always given the impression that she copes well with everything. She excels at school and puts 110% into everything she does. Over that last year or so I have noticed things don't seem quite right with Alice. She has not seemed to be her happy self. I had been putting it down to the fact that Alice has a lot to cope with in her life, she sees all of Isaacs hard times and deals with them. However, just recently there has been a nag at the back of my mind, for a long while I have ignored it but a few months ago there was a problem at school that escalated and got completely out of hand.  I went for a meeting at school and was asked those words I dreaded to hear. "Do you think that Alice may be on the autistic spectrum?"  I wasn't surprised that I was asked this but it still wasn't a question I was prepared for.  All the thoughts were spinning around in my head and none of them were making any sense.

Let me try and explain.  When you have a child who is diagnosed with autism, you see autism everywhere. It is almost like you have an 'auty radar'.  You can pick out the child in a playground who you see traits in, you look at the child at a party who is separate from the group and wonder if there is something there.  Since having Isaac I have seen traits in a lot of people, but that is exactly what they are 'traits'.  From people who like things done a certain way to someone who dislikes being in a crowded place.  This does not mean that I see the whole world as autistic, I think for me what it means is that I am trying to 'normalize' some of Isaacs behaviour.

Alice is 10 and exceptionally bright for her age. For those of you who understand levels, Alice is in year 5 and working at level 6, that is how bright she is.  However, her ability to deal with social situations is really starting to stand out.  She constantly thinks that people are looking at her, she hates to be the centre of attention and, at times she can be very socially inappropriate. She has not yet developed the ability to realise that just because we think something, doesn't mean we have to say it.

Whilst we could argue that it could be that Alice is just shy, having spoken to her school I agree with them.  The alarm bells really rang for me when I was asking her what had happened, she walked out of the room shaking her head and looking at the floor.  Once she had calmed down she told me that when she feels like that she can't speak.  She said that all the words are in her head but she physically can't speak, she desperately wants the words to come out, but they don't.  She doesn't speak to friends if she sees them outside of school, if they say hello to her in the park or in town she will cling on to me and hide her face. 

Once school had raised the possibility that Alice may also be on the spectrum I did what I do best and researched.  I noticed from researching that a lot of girls are not diagnosed until late into their teens because they present very differently to boys.  They are more socially aware and this masks a lot of the symptoms.  On reading the signs and the red flags for girls, I realised just how many there were for Alice.  Alice could read prior to starting school ( I think they called it hyperlexia), She gravitates naturally towards older girls, this is apparently so that she can read their social cues. Girls may appear to be natural leaders to start with but as they get older they will be seen as controlling.  All these things described my little girl to a tee.  Then I thought about other things. Alice likes routine, she doesn't like change. She doesn't resist change in the same way that her brother does, but she doesn't cope very well with it either. Alice has a wardrobe full of lovely clothes but will wear the same 2-3 outfits all the time, she has clothes in her wardrobe that she never wears. She hates having new clothes. Her hair has to be a certain way and she will no longer let me do it for her.

So where do we go from here? Well at the moment I am stuck well and truly in the ostrich position.  I am not ready to accept or deal with this at the moment.  Whilst in my heart of hearts I know that I need to get my head round it, and quickly, I can't.  I have had a few people tell me that it will all be fine, that I can do this, I've got Isaac so I know what I'm doing, it doesn't change who she is etc etc.  The problem that I am having is that I don't want to do this. I don't want to go through the appointments, the assessments, the "You're seeing things that aren't there", the "It's probably because of her brother."  I don't want to do it again, but most of all, I don't want to admit that it may be true.  I don't want my little girl to be on the spectrum.  I know I'm not doing her any favours by ignoring it, but equally I'm not sure it'll do any good for her by seeking an assessment or diagnosis. I'm in a place I never imagined and it is harder than you could believe.  You would think that having already gone through all this with Isaac it would be easier, but it's not. You see, with Isaac I always knew that something wasn't as it should be, with Isaac it was not a surprise at all, most of all, with Isaac I knew almost from birth that there was something not right. With Alice, I have had 10 years of having my little girl.  All the hopes and dreams etc, it's hard to explain, because whilst it doesn't change who she is, it changes who I thought she was.  I'm not even sure that that makes sense but I know what I mean.

I honestly don't know what to do for the best. Alice is a bright girl and I'm certain that fairly soon she will start to realise that she is different (if she hasn't already), equally, she doesn't want to stand out from the crowd and in seeking assessment etc this will automatically make her stand out.  The problem is that is just over a year she will be going to secondary school and her primary (which is a small village school) have agreed that unless things are put into place now to help her, she will get  lost in a large secondary school.  I guess I have some serious thinking to do and pull my head from being buried deep in that sand.

This is a post I have tried to write several times, but have never managed. It has just been too hard, I guess the fact that I have managed to write and publish it means I am making slow progress on the road to acceptance.  I've still got a long way to go though.  Alices IEP came home for me to read and sign before the school holidays and I still haven't managed to take it out of the envelope.  The day it came home it struck me how things change.  That same day Isaacs report arrived home with him, I was crying tears of joy over his achievements and at how well he is doing, yet I was crying tears of heartbreak at the envelope containing the IEP. I'm used to it being the other way round.

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.