I am mum to two gorgeous boys as you know, DS1 is 4 years old and rocks my world on a daily basis. I can’t express how wonderful he is and it breaks my heart to see him struggle with life.
See he is not a ‘normal’ 4 year old (although in all honesty what is normal other than a setting on the dryer 😉 ) DS1 struggles with Social Skills, Emotional Control and Empathy, his world works slightly differently to the one that we all see and understand. We are currently on the long road to diagnosis for Aspergers (although at yesterdays appointment the doctor said she feels that he may also have ADHD in addition to potential Aspergers) We will have to wait and see, the road to diagnosis is a long one, and rightly so, once the next batch of assessments are done we should be looking at a final diagnosis in around 12 months time.
The hardest aspect of having a child on the spectrum is not dealing with the child, but dealing with yourself.
I struggle on a daily basis because what we perceive as normal, what we see as social cues in life, what we understand is acceptable and unacceptable are not the same as what an Aspie will see.
I know that it’s unacceptable to have a complete meltdown because someone didn’t cut my sausages the way I wanted them cut, the aspergers child doesn’t.
I know that when I’m out with friends and one of them says or does something I don’t agree with that I can’t lash out at them because it’s unacceptable – The aspergers child doesn’t.
I could give hundreds of examples about how DS1 is affected on a daily basis, situations he struggles with and battles that he and I fight together day by day, and throughout my blog I will keep you updated as to struggles we face and how we deal and get through them. But for this post I want to talk about the main issue I face having a child on the spectrum.
The main problem for me is peoples perception of my son. I know he is a wonderful, awesome, highly intelligent good little boy! I also know that others perception is totally different.
See people are fickle. Trust me the amount of looks, stares and comments I have faced in the last couple of years would be enough to crush a lot of folks, and I hate to admit it but once upon a time I was just like them.
It’s so easy to judge when you are an outsider looking in. The child throwing a tantrum in the supermarket because he didn’t want the carrots in the trolly, his shouts and screams, his arms and legs flailing around him, and the mother who appears to be doing nothing about the situation. Come on… what kind of a mother allows her child to act out like that in a public place?? The answer… me!
What the onlookers haven’t noticed is that I have spoken to my son, I have explained that the carrots need to be in the trolly, I have explained that his behaviour is unacceptable, but in his mind, in his world there is no place for them, and they are not part of his plan for the day. Once he has zoned out like this there is nothing I can do that will placate him, if I tell him off the tantrum will get worse. All I can do is wait for him to calm down and then explain to him why his reaction was unacceptable. See what onlookers perceive to be a tantrum, what they see as anger and behavioural issues is actually anxiety, and when anxiety strikes he just doesn’t know how to cope with it. He can’t cope with it, and will always struggle in life with his anxiety. Right now however his way of coping is to act out. He is acting out not because he is naughty, but because it is the only way he can deal with the feelings of anxiety and frustration, he doesn’t understand them and can’t process them in any other way. He is scared, not angry, not naughty but scared! Scared because he is out of control and can’t deal with it! He isn’t giving me a hard time on purpose he is just having a hard time himself!
Yes over time I can teach him to be more flexible and this will help to minimise the stress and anxiety and thus put a stop to the outbursts. But this is a long, slow and painful process, it won’t happen overnight, and he may never truly understand why, but in time he will learn how to cope with his anxiety in a more positive way.
Until then we just have to muddle through each day, I may have to teach him 1000 times before it finally registers, and no I can’t just smack it out of him! The amount of people who have said to me “What he needs is a smack on his backside! That will solve it! He won’t do it again then!” – I have issues with that. Firstly since when has it been acceptable to hit a fellow human being? If I smack my child I am teaching him that it is acceptable to hit people when you are cross! Hardly a great life lesson! Secondly – would you hit someone who was scared? Seriously!
Fear for my boy plays itself out in three ways: 1: Tantrums, 2: Aggression and 3: Silliness. Right now I’m working really hard on the aggression (and obviously the others as and when they crop up). We have issues in school and we are working on them. His first reaction to another child who (in his mind) is causing him anxiety is to lash out at them. He doesn’t mean to do this, he just doesn’t have the coping mechanisms in place yet. To the parents whose children have been lashed out at I am sorry! Sorry that yes my child may have hit your child, but I’m not sorry for not pulling him up on it in the way you want me to do so! Yes I am teaching him that this behaviour is wrong, yes I am teaching him what is acceptable and what is unacceptable, and yes he is starting to get the hang of it. But every now and again the anxiety is too much for him and he just can’t cope, this is his vent, his outlet, the only way he sees that he can cope at times, and I’m working on it as hard as I can. He’s not naughty he just can’t cope. Yes the things he may lash out for may seem trivial to us, but to him they are soul destroying, and all I ask is that you try and understand.
For now all I can do is keep teaching him and make him feel as safe as I can without wrapping him up in cotton wool.
For more information about Aspergers this is a great site to trawl through and has really helped me: http://www.myaspergerschild.com/
Some books that you may find helpful if you are in the same situation as me:
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