Friday, 20 December 2013

Not what I was hoping for

I've been trying to write this post mentally for a while, but I still can't quite get things straight in my head.

Sorry if it's a bit jumbled!

So, on Wednesday J and I went to CAMHs for an appointment with the Neuro developmental team.  We saw Dr Z and V - V was one of the team that did J's group assessments.  We were referred to the team as a result of the group assessment.  Unfortunately my husband couldn't be with us as he had a prior commitment, and rescheduling would have pushed things back by two months at least.

After the group assessments we felt that the team had seen the happy side of J, and a few of his issues, but not "the real J", so this was the opportunity to try and give a better, clearer picture of things.  My husband and I spent some time talking through points I needed to cover, his observations and my own, so that both our perspectives could be heard - I went into the appointment with a long list of difficulties, ready to cover as much as I could.

The appointment didn't go so well.

For the first time at one of these sessions I felt like I wasn't being listened to, I tried to convey how things were, but it just didn't seem to work.  J has a lot of difficult behaviours, a lot of issues, but somehow each time I brought something up it felt like it was glossed over or it turned into me trying to justify why or how this was "worse" than a "normal" 9 year old.

It really didn't help that J was minimising things, saying "I don't do that", or trying to change the subject at various points.  He also got very upset - tearful rather than shouting - and that distracted everyone in the room.  We all tried to get him to go to the playroom, or to look at the fish, but he wanted to stay.  Dr Z was very concerned about J's emotional state - maybe that is why she stopped listening?

We talked through pregnancy / birth / babyhood / toddler years / current issues, then J and I went out to the waiting room and Dr Z and V discussed what they had seen and heard.

We were called back about five minutes later, by which time J was smiling and giggling.  He can be very mercurial - from joy to misery in the blink of an eye.

Whilst they can see some issues, they are unsure of any diagnosis - apparently the clusters of issues are not right for ASD in their eyes.  They want to do an ADOS and then look at all the information they have again, and work out how to proceed.

Apparently the fact that J likes to be tickled makes AS unlikely, and there are other dissenting issues too.

When they said that I was stunned. 

I asked them to ask me about things they had expected to see that they felt were absent - because I'm worried I left out details, it is so hard to cover *everything* in an hour - but they were unwilling to do that. 

I told them that all the follow up reading I had done at the paediatricians suggestion led me to the conclusion that it is an ASD. 

I asked them what else they thought it could be - they were unwilling to give *any* real reply to that.

I told them that I felt unable to help J, and that I was unwilling to go through this process and be left with a negative diagnosis and no help, which they commiserated with and gave non-committal "we'll see what happens after the ADOS" answers to.

Dr Z did say that J's emotional imbalance and anxieties are a concern, so perhaps it's good that he got so upset.  But that is small comfort really. 

So, now, we have ANOTHER wait - probably two or three months - for the ADOS.  We will have to hope that the ADOS is accurate, and gives them the missing pieces, but I'm not convinced it will.  J has done one before, and it's an environment he thrives in - last time it was three adults and him in a quiet dimly lit room, no pressure to engage or finish tasks, and just moving from one thing to another very quickly.  I hope the protocol for a nearly 10 year old is different to that for a 6 year old!

Then, after that?  It depends on how things turn out.  I am firmly convinced J is Autistic - I have read extensively about the difficulties and issues, I've networked with other parents and found so many "yeah, J does that too" moments, spoken to other people who know J and are experienced in the field, and every time the response is "yes."  It seems so self evident!

So, if the ADOS brings clarity, then awesome!  If not, then we need to see what CAMHs suggest next, but I will not go quietly.  If they think "it" is something else, then I will learn about this something else and if it doesn't fit I will fight for the right diagnosis.  If they think there is nothing, then I will fight for another set of observations, a different team to assess him, because the issues are there to be seen, they really are!

A while ago I heard the term "warrior mums" - for those who fight relentlessly on behalf of their children.  Sometimes we need to fight for education, for allowances to be made, for services to be provided, for the right diagnosis.

J needs this, and I will not let him down.

I'm ready to fight.  Hard.

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