Wednesday, 4 January 2012

My Child is Perfect.

I'm still reeling from watching parts one and two of ITV's My Child isn't Perfect.

Recently, A's anxiety levels have been on the rise. With all of the excitement of Christmas he is, like all other children, quite high anyway but Christmas is always a hard time for him. I say anxiety because people with autism or an ASD have higher anxiety levels than those without.

For some unknown reason, at this time of year is always when his annual paediatric assessments are held. I have cancelled them in previous years, especially when one year he was going to miss his school pantomime. Cancelling means, however, that we often have to wait until as late as April the following year for another appointment. While this has been a routine activity for the best part of a decade, it is still a stark reminder to him that he is different and will always need more help and support. He was embarrassed by the need for a visit and was worried that his classmates would find out. The school handled it well and were keen to see what the doctor would say this time around. The meeting went well and he articulated himself very well to the Doctor, who was responsive and pleased with A's progress this year. He has made great strides this year, for the first time in what seems like an age. Unlike previous years, the staff at school are quite happy to let him express himself in anyway he feels like and actively encourage his passions and interests. None of his teachers mind his stimming behaviours, knowing that it helps him focus better. Stimming, if this is the first time you've heard me mention this is a repetitive body movement, such as hand flapping (one of the most commonly associated stimming behaviours in ASC kids) that stimulates one or more senses. There is disagreement in the medical community about why this happens. With A, it focuses his bodily energy into one movement and helps him concentrate. A now likes to breakdance with his fingers. The period where he drummed repeatedly took a hell of a lot of patience on our part.

As A has gotten older I have always discussed autism with him. Not just his own but anything that comes up in the media. Sometimes I am surprised by how intuitive he is and about how much he understands about himself and his condition. Then sometimes I am baffled by how little he knows and understands.

The night before the annual assessment he broke down and cried for a solid 45 minutes. When he calmed down, caught his breath back and was able to talk, he asked me if he would ever get better. Confused by what he meant as better, I asked him to explain. It turns out that the fact that autism is a lifelong developmental disability seems to have escaped A. We talked it through and he came to understand that he will always be autistic and that it is a part of who he is. Once we moved past this, he broke down again, frustrated that he isn't perfect. He views his autism as an imperfection and one that not many people have. He feels isolated. We talk through this and steer him away from empty words like perfect until he feels happier and has purged his worries for the time being.

It takes a lot of emotional energy to go through this. These worries creep up unexpectedly and he can't be fobbed off easily. We have to talk and talk and listen until he has things squared in his mind in a way that sits well with him. These feelings and frustrations aren't just caused by ignorant people around him. They are caused by the media and the lack of awareness in society. This makes you, as a parent, very defensive, very angry about other's ignorance about your child. All we can do is reassure him and support him through these dark periods and remind him that we are his biggest champions. Let's hope that 2012 sees some serious changes in autism awareness!

4 comments:

  1. A friend recommended your blog to me and I'm glad she did. I am a fellow autism Mum blogger living near Manchester. Your post is very poignant and I can really relate to your comment 'We have to talk and talk and listen until he has things squared in his mind in a way that sits well with him.' For my son, building resilience is key. I've just written about this in my latest blogpost, if you want to take a look.
    http://bit.ly/xOsWHr
     

    ReplyDelete
  2. My son is not autistic but has a complex learning disability.  to me he is perfect! I agree with you that the perceptions of other people/media etc can be hurtful.  We should be more tolerant as a society that not everyone conforms to what is seen as 'normal'  This does not mean that they cannot contribute to society. Your son sounds like a very intelligent young man.  Good for you for instilling resillience in him.  I quite often get 'oh thats a shame' when I explain about my son - No its not - its who he is and although I wish life was easier for him I wouldn't change him for the world xx

    ReplyDelete
  3. Thanks so much for commenting Kathy! I agree, I wouldn't change him for the world!

    ReplyDelete
  4. Thank you Zoe! I will be over shortly to check out your blog and thanks so much for commenting. I am intrigued now, which friend? Lol! x

    ReplyDelete

Thanks for taking the time to comment!