Thursday, 14 June 2012

The Diagnosis Part 3

Originally my appointment was in July but it was re-scheduled after the MDH meeting, due to consultant being ill. However they did not hold off from sending the letter out detailing the conclusion. I remember opening the mail thinking it was another appointment letter - I was certainly used to receiving these - however it was the conclusion letter. 

I read through it shaking and it was agreed by all professional bodies that he met all six criteria of the triad of impairments and that Autism Spectrum Disorder (ASD) was given. Due to the fact he scored very highly on his academic abilities (Very Highly) and his language skills were not delayed, it was felt that Aspergers Syndrome was the appropriate diagnosis for him.  In short, he's autistic.

I didn't expect to receive this information in a letter (to be fair, neither did they) and I did feel very shocked. I was surprised to feel shocked as we had been through testing for over a year, had always known he was different, yet it was now finally official. I think I just thought 'oh its just mild, he won't ever get an official diagnosis'.  Suddenly it happened and i was now in that place where I felt the grief and had to come to terms with the reality.  My husband though was very expecting of this outcome and was happy that the diagnosis had come through as he had expected. From how we initially reacted, the feelings had now been reversed.
I don't know what i expected from the diagnosis as nothing actually changed, its just now we have a reason why he behaves the way he does. Also it does mean we have easier access to help.  ASD is a life long disability, it is a brain development disorder affecting his communication, there is no cure but it does not mean there is no hope.  There is also no known reason why ASD happens. 

It means we have to work harder and teach things that other children just get. It means we have to change our approach and move our goal posts. It means we have to not care about other peoples judgements and know we are doing whats best, even though it looks wrong to others (sometimes alot easier said then done). We've had to throw out the parenting approaches we learnt from all those books and TV programs (for this child) because now we are dealing with a different set of rules.  It means theres a lot of pressure on parenting and teaching him social norms to help him be a successful adult.  It means I go to lots of appointments now and see different specialists (which I am grateful for).  It means I have to be free to care for my son 24/7 even during school hours because sometimes he needs my support in school.  It means I may need a babysitter in the day while i sort out a volatile situation and I'd be grateful for the offer of help :) It means a lot of preparation for any changes or new events.  I'm learning all about social and moral stories.  It means he's allowed to do things in a different way which others may look upon as unfair treatment.  It means that the rest of my children sometimes have to watch violent and difficult behaviour as we learn to best support him, which means they too may act up.  Its not easy as an adult to deal with, so it is hard for them.  It means I'm sometimes quiet in the school playground, wondering whats coming next and I'm tired as i have a lot on my plate.  It does not mean I am unhappy, aloof or unfair.  I am really grateful for all my children, I love them to bits I am so thankful to God to be a mother.

It also means I have an amazing son that sees the world in a completely different light, that's not bound by social norms, so will just say what he thinks, when he thinks it.  I have a son that has amazing learning abilities who looks at me like there's something wrong with me, as i don't know what 'h' is on the periodic table (think its hydrogen or helium). When he gives me the atomic number, i have no idea what element he's talking about and he thinks i'm weird. It means I have no chance of outsmarting him with numbers or science but I have lots of other things I can teach him.  It means I get to see and experience the world from a different perspective, one I thought too scary to imagine - I'm conquering my own prejudices about disability that i didn't even realise i had, had.  It means i am learning a lot more and meeting some lovely people along the way.

Through the assessments, I learnt a lot about my child and it gave me my parenting confidence back. Also having other children I can quite clearly see the differences and I can see how normal parenting strategies work and empower children and parents.  The diagnosis was long and thorough but worth it. Although it can be hard walking into the school playground wondering what's happened today, at least now i can give a reason for why it happened. It doesn't take away unacceptable behaviour but it gives others understanding.  In short we're just at the beginning of our journey of living life on the spectrum!

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