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In a Quandary

September 16, 2009

Today was the day.  The Chipmunk’s appointment with the ENT surgeons, to decide whether operating on his ears is necessary to improve his hearing, or whether it will improve on its own.  Last time we went, they decided to wait it out over the Summer, in the hopes that he wouldn’t pick up any more infections and therefore would not require the operation.  At that stage, the hearing in his left ear was impaired by about 40%.  He had no hearing at all in his right ear, as the ear drum was not vibrating at all.  The opinion of the surgeons then was that his ‘good’ ear was not bad enough for them to operate on either ear – in other words, he had enough hearing to get by (however they were of the impression that he tends to lip-read for at least some of the time).  I have to interject here, to make clear that not all of the Chipmunk’s ‘deafness’ is due to, well, deafness!  The autism plays a significant role here too.  At times, it is almost impossible to know whether he is hearing but ignoring me, not hearing because he is too focused on something else, or not hearing because he simply can’t hear me – it’s a tough one.

I was fairly happy with the ENT assessment at the time, although the likelihood of him getting an infection over the Summer was minimal, compared to the constant infections he gets in the Winter months, so I wasn’t sure how accurate a guide this would be.  Still, at least the ‘wait and see’ approach meant that he was under the care of the ENT team, and that he would be guaranteed a follow-up appointment.

That follow-up appointment happened today.  Another round of visual inspections of his ears, trekking around the hospital, shuttling backwards and forwards between Audiology and ENT and timpanic tests on his ear drums and the evaluation was complete.  Apparently, his ‘bad’ ear now has minimal movement of the ear drum, whereas before there was none at all.  Good news, I thought.  However, this was immediately tempered by the revelation that the ‘good’ ear had deteriorated to the stage where it was almost on a par with the ‘bad’ ear.  Which meant that the option of operating was now firmly back on the table.  Darn.

The ENT surgeon spent the next 10 minutes trying to talk me into agreeing for the Chipmunk to have the operation.  It went a little bit like this:

ENT:  The operation is very quick, just a minor procedure which only takes a few minutes.

Me:  It also involves a general anaesthetic and an overnight hospital stay.

ENT:  It may help with his balance and co-ordination.

Me:  It may also confuse and terrify him at a time when he is dealing with Occupational Therapy referrals, Physiotherapy referrals, CDC appointments and has a new class teacher to get used to.

ENT:  If it were my daughter, I wouldn’t hesitate to give her the operation.

Me:  You would say that, you’re a surgeon.

ENT:  Shall I put him on the list then?

Me: Um, no, not yet thank you!

And so it went on – you get the general idea!

Please don’t think I am being deliberately difficult here.  I am genuinely concerned that an operation – and in particular an overnight stay in an unfamiliar place with unfamiliar people – would be too much for the Chipmunk to deal with right now.  Particularly with all the other changes he is coping with.  That would be enough for anyone, but especially an autistic six-year old.  I’m not trying to deny him something he needs.  If it was a procedure that would dramatically improve his quality of life, I wouldn’t hesitate to agree.  But that is not what is being promised – or even suggested.  Instead, it is to lessen (not eradicate altogether) the frequency of infections, and the pain he experiences when he gets them.  Obviously I do not want him to be in pain.  But I am not convinced that the trauma of the operation is justified by the improvement being offered.  I don’t want to prevent the Chipmunk having a better existence because of my fears – and I do have them.  I am concerned about the anaesthetic, particularly because I have a history of problems with it.  I want to cry when I think of that tiny child in that huge hospital.  But those are really not my reasons for wanting to delay.  I truly just want to do the best thing for him, at this moment in time.  Eventually, after much wrangling with the ENT surgeon, we agreed to see how he goes over the Winter – infection season! – and review the situation again in January.  I allowed myself a sigh of relief at this point!

Another question of mine, which is as yet unanswered, is the matter of the Chipmunks’ auditory hallucinations.  On both of the most recent visits to the ENTs I have mentioned this, and stated that I am unsure as to whether it is Asperger’s-related or hearing-related.  On both of these occasions they ask what the hallucinations are like, and then say nothing!  When I put the same question to the Chipmunks’ paediatric Registrar, she just said to keep an eye on it.  Now, I’m not going into a panic about them.  It doesn’t even really bother me, except that I know it bothers him.  But why can’t anyone give me an answer?  I realise it may not be possible to say categorically:  yes, this is why it happens.  But would it be so hard to tell me if auditory hallucinations are a recognised part of autism or hearing impairment?  Apparently it would, yes.

Back to the issue at hand.  At the moment, I feel the right thing to do is to hold off.  See the ENTs again in January, at the height of the Winter – if he’s going to get more infections, that will be when!  Having weighed up all the issues, I am happy with this decision – I think.  Maybe I am just postponing the inevitable – delaying the decision until a time when I can better think about it and deal with all the implications associated with it.  But really, is that such a bad thing?  If it makes my life easier – and more importantly, if it makes the Chipmunk’s life easier – at least for a time, then it is the right decision.

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5 Comments leave one →
  1. tndaisy1960 permalink
    September 16, 2009 19:26

    You did absolutely the right thing! You know as well as anyone how much change he can handle, and how change rattles all Asperger’s folks. Also, by postponing it, you’ll have time to prepare him for the possibility of what might happen in January. Considering there won’t be that much benefit from it anyway (if I read this correctly), I see no reason to rush it now, when he needs to adapt to so much else.

    Hugs to you both.

  2. September 16, 2009 19:42

    I don’t envy your situation, Hannah. So many things to juggle, and it’s clear the Chipmunk’s got a boatload of his own needs! All in all, I think you did the right thing—he’s got a lot of new experiences to process right now and it doesn’t sound to me like the operation is guaranteed to do anything positive.

  3. Mum permalink
    September 16, 2009 21:40

    You did absolutely the right thing Hannah….and who knows what God might do in the intervening months – this way you are not introducing yet another new situation when the chipmunk has quite enough to cope with. He is such a gorgeous, amazing little boy – a real testament to your mothering skills and love. Okay I’m biased but it’s still true!!

  4. Leonard permalink
    September 17, 2009 03:52

    I am so proud of you, Hannah. You did the right thing! You know him best and waiting sounds like the best approach from what I read. Just kept him loved and he’ll be fine!

  5. September 17, 2009 13:05

    Such a difficult thing to deal with – especially when it comes to balancing our own fears and our child’s health You have to go with your gut Hannah, they don’t know him like you do. I have always found that when I waiver and go along with so called authority without taking time for reflection on what my instincts are telling me about decisions for my kids I end up with regrets.

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