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.