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).
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