Have I Been Handling this all Wrong?

Yesterday I phoned up a local Surestart Centre about their timetable, looking for different activities for all of us to do ( when J not at school) and M having some time with mum when J at school.  We haven’t used this one before, it is a little further afield but I thought we may brave something new and it would be nice for M to have something ‘special’ for her to attend.

I spoke to a lovely lady on the phone and explained that I had 2 children and  my oldest was on part -time school hours and was looking for something for us to do and that my son was thought to have Asperger’s so on occasion he may become upset. I don’t really know why I  told her this, maybe because  at least they know in ‘advance’… last week at the library was just awful after J totally lost it twice and whilst I do not want everyone to know about J’s AS (as it is none of their business), I think maybe I have to accept I need to be more open and I may get more understanding, I may not, but if my son had a more obvious challenge in life… say difficulty with mobility and needing a mobility aid, no-one would wonder why he wasn’t running around with the other kids as it would be obvious ( this is not meant to offend anyone, it is merely the way my brain is thinking things through)My son struggles socially and with anxiety and little things upset him deeply and can lead to a major meltdown and everyone thinks he is just a spoiled brat or naughty – in many ways that upsets me more than telling people about J’s AS. I am left feeling like I want to shout ‘ have you any idea how difficult my son finds social situations? My son has fought so hard and you can just take your tuts and stares and opinions elsewhere.’

So that got me thinking have I been handling this all wrong? I have taken the stance that people will be told about J’s AS on a ‘ need to know basis’ and I have done that for his sake as , like I have said it is none of their business. But I am I doing him a disservice? I thought about being in his shoes ( and I know he is largely unaware of stranger’s reactions to his little ways but whilst that is great, I think awareness will come with age and it is going to hurt him deeply.) and whether I would prefer for someone to think of me as an unpleasant person, selfish, violent etc or would I rather someone know that sometimes I have such outbursts that I cannot help due to a ‘ hidden disability?’ And I have to say I chose the latter. J cannot make that choice just now and as he grows up I will ask him to inform ( or me inform) when HE chooses.

I am always harping on about how I wish people were more understanding and accepting, not just of J but of disabilities in general. In my working life, I have always tired to help people with learning disabilities become a real part of a community, valued for being an amazing unique person with alot to offer the world. And I think I have really messed this this up with J. I have thought I wanted people to get to know J first and then tell them about his AS at a later point so they could get to know him. but his meltdowns are happening so frequently outside now, many are just seeing a very angry little boy anyway…. not seeing his positives. Also, I want teachers, other parents and everyone I come into contact with really  to gain an understanding of autism and  Asperger’s, as this can only help all those children on the spectrum growing up. But somehow my vision has become skewed…. I think I am protecting J and it actual fact I don’t think I am. Further more, it is almost like his Asperger’s has turned into a ‘dirty little secret’ which is just so wrong on so many levels and never going to help J.

So I think I am going to change my approach for J’s sake. I am not going to get a sign up made up for the front door, or ensure he is wearing a humorous Autism awareness slogan t shirt. But I am going to be the positive mum, who tells people from the start and let them see how proud I am of him ( I hope people do anyway)…. I don’t want it to seem like an attempt at pity…. I don’t want pity- I have an amazing little boy why would I want pity? I want understanding for J and want to inspire other parents of children with autism, to  b***er the stares, hold your head up high and to celebrate your unique child . Not easy in the middle of a meltdown, but I am determined to take this approach. How can people ever understand if I don’t even attempt to explain AS?

On a wonderful forum where I have received so much support and advice, another mum posted a few pictures relevant to autism. One really tickled me and I know it may not be everyone’s cup of tea but it makes me giggle – especially with J’s tendency when excited! So I would like to share :-

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N.B. the title of this blog comes from my son’s very literal understanding of ‘ magic carpet ride’ ….. he believes this to be a ‘car pit’ ( as in ‘ sand pit’) and demonstrates this with a plastic lid and toy car. The magic comes in when the toy car is covered with the lid and it disappears!

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