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.
