Sunday, 13 May 2012

10 fingers... Part 2

I wish I could write of a straight forward diagnosis from that meeting but sadly that was not the case.  At the meeting with playschool the manager said, she believed he only had mild autism and not to worry.  That it will probably only come out when there are big things going on his life and it disrupts his routine. I now know this is not true, that it doesn't come and go. I remember at the time feeling a bit confused.  Well surely he is or he isn't? what is autism? I went home from the meeting and we discussed it with family members and eventually i phoned my health visitor.  There is no family history of autism so when we discussed it with our parents they were really angry and assured us he was 'normal'.  Their understanding of autism at this point, is of people in special schools/homes unable to communicate at all and he did not fit this belief.  The health visitor was livid that such a meeting had occurred and came straight over to assess him.  She said we must be very upset and that autism can only be diagnosed by a consultant paediatrician after extensive testing.  Jon and I were now both very confused.  We knew he was different but we also knew he can communicate well.

B talks just like an adult, he can communicate day to day with no problems. If you met him in an environment he was happy in, then he would appear just like any other boy, maybe a little eccentric but no different. The health visitor said he may have some behavioural difficulties but its probably due to new baby brothers and new home.  She gave me some techniques to help him to try and communicate his feelings and not to worry about the other stuff.  She said 'He's obviously a sensitive boy that reacts to these situations'.  Looking back this also was not very helpful and perhaps if I hadn't felt inadequate in parenting, ashamed or prideful, then I may have been able to talk about how difficult things really were - instead i felt i needed to keep up appearances as no one would want this for their child.  I felt ashamed for feeling relief at the initial suggestion.  From everyones reactions, this seemed to be an awful outcome.  How awful was I to have been relieved at such a suggestion.  I just felt this confirmed my inadequacies and i was a failure, my bad parenting was the cause of his behaviour.  We put it on a back burner and continued on with life.  Playschool were more tolerant of his behaviours from then on but they didn't go away and no help or support was offered.  Life was hard but we just carried on and didn't look into it any further, thinking that playschool had it wrong.
I was really dreading B starting school.  I loved the school we chose and was so pleased he got a place but thought, he's going to get suspended or expelled within the first term.  I seriously considered home schooling as i just didn't think it would ever work.  On B's settling session, which is one hour, he screamed for 45 mins of it.  He just calmed down when it was time to pick him up.  He thankfully had an experienced reception teacher, who had lots of strategies under her belt.  The first day was awful but the teacher was prepared and he had a good first day (eventually).  We did have quite a few problems that year but he seemed settled.  He is very bright (exceptional is what his teacher called him - in terms of academic abilities) so i think he was classed under being eccentric in terms of his behaviour.  At school they could stretch him which i thought well perhaps that's what he needed and that eventually his behaviour would sort itself out.
This was not the case - autism is not something that you grow out of. His behaviours continued and it could no longer be put down to his age or lack of maturity. In year 1, we were called into a meeting with his teacher during the first term.  She discussed his behaviours and said in her experience she believed he was on the autistic scale and it was worth referring him to a paediatrician.  I thought great at least we can get this sorted out.  Our families were kind of in denial about it but said well at least you'll get this all cleared up and this silly autism cloud hanging over him will disappear. 
I also went to the GP to discuss with him and wrote out a list of behaviours that were out of the ordinary but he really wasn't interested in anything I had to say.  As far as he was concerned he had met my son, he was a normal boy and nothing I had to say on the matter along with anyone else was going to change that.  He also said 'well the EP (educational psychologist) will just say he's having a few behaviour problems' but nothing to worry about it.  Before I knew it I was out of the door and that was the end of that, according to our GP.  At this time I felt I had no choice but to believe him - after all he's the one with the medical degrees, he knows about this stuff - I'm just a mum experiencing children for the first time - what do I know in comparison?
His first real appointment was with a community paediatrician and by real I mean the first medical person to take the appointment seriously.  This was arranged via the school referral as the GP route was a dead end for us.  I'm so thankful now that the school pushed for this appointment to take place.  This came through at the end of year 1.  We took a long extensive history of his behaviours.  It was strange discussing him when he was sat next to me but he really didn't care.  I told him we had a special appointment to find out more about him.  When she went to take his heart rate he completely freaked out due to the stethoscope being cold.  As he was getting older these tantrums are a lot less common in his peers so it was becoming more noticeable.  He went from complete calm to massive rage in seconds.  The examination had to stop.  I was glad she could see his reactions and based on his history, we were referred to the child development centre under a paediatric consultant.

So the story of his diagnosis begins....

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