I Should Have Advocated Better

Fighting for Boo
Advocating
Image courtesy of Ffion Atkinson, Flickr

 

Boo has a diagnosis of Auditory Processing Disorder. In fact, he was diagnosed with this considerably before his ASD diagnosis. In a way it doesn’t really matter, it all rolls in to one, but it’s central to this post.

 

I’m feeling the guilt of never being ‘enough’ as an mum at the moment, particularly in the world of Boo’s ASD. I’m tired, to my core – it’s been a tough 6 months or so for us, and as such I just never feel I’m doing enough.

 

Boo has been struggling to hear, and suffering from repeated bad ear infections, for the past 18 months. Obviously ear infections and hearing problems are no fun for any kiddo, but with ASD in the mix it’s been hard. Full stop hard. We’ve had weeks missed off school where he’s rolling around trying to pull off his ears and screaming in pain. We’ve had infections I’ve missed because he hasn’t been able to explain the sensation and I thought he had water in his ears from swimming. We’ve had even more zoning out from life than usual, as he becomes disengaged because he can’t hear.

 

Reading that back I’m cross at myself that I didn’t do more.

 

Despite repeated visits to the doctors about his ears, no one took us seriously – each time it was treated as an isolated case. No one saw the bigger picture. You see, Boo, being the Poster Boy for High Functioning, does this incredible job of ‘seeming ok’ for anyone other than me or dad. He can be lost in a world of stimming, echolalia, and melt down at home one minute, and walk out in the world seemingly ‘normal’ the next. This kid has ‘holding it together’ down pat. And most of the time that’s great, it means he functions in the NT world amazingly.

 

But it also means he’s a shockingly poor advocate for himself.

 

He walked in to the doctor’s surgery numerous times, despite rolling around in agony at home, to simply stare at the door, disengaged from the doctor, and at most to mumble “it feels weird”.

 

The result is no one took it seriously. Eventually I managed to get him referred back in to Auditory Processing – I think to shut me up more than anything. It felt there was this impression that of course he seems like he can’t hear, he has APD. And then the shock started.

 

Boo’s hearing is bad. Really really very poor. The APD consultant was shocked he’d been kept in primary care so long. That we were doing this boy a disservice. That he couldn’t reassess his APD because he simply couldn’t hear well enough. Cue urgent referral in to ENT.

 

So, we rock up at the ENT appointment. Cue more shock that this has gone on so long. That he’s coped as well as he has. That he urgently needs surgery. That it’s really very very poor and needs help as soon as possible.

 

And all I can feel is guilt. More guilt. I should have pushed harder for him to be referred sooner. I knew things weren’t ok, that his hearing was extremely poor. In hindsight it wasn’t ‘just’ APD, or ASD, or spin-offs from those. Guilt that he’s suffered excruciating ear infections, time after time, which could have been minimised. Guilt that a child who already fights a daily battle to read situations and ‘hold it together’ was having to work ten-times as hard because he simply can’t hear.

 

Fundamentally I should have advocated for him better. He couldn’t himself. He felt he had to downplay it at appointment after appointment. 18 months of not hearing, in a world already rife with difficulties for him. Even at the latest hearing test he believed there was a ‘right or a wrong’ – no shades of grey – he struggled, I could see him struggling but the audiologist wouldn’t have done, he seemed so ‘together’, but he still waited until out of the room before tugging his ears and admitting it.

 

So kick up the butt time, and a reminder for me that his needs are different from an NT child, and he needs me in his corner big style. Better late than never, I’ll be advocating for him better.

 

 

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One thought on “I Should Have Advocated Better

  1. You are an awesome parent and need to cut yourself some slack. They are sneaky secretive little beggars. Mine is petrified of Drs etc so will hide problems to avoid going and won’t look at the Dr refuses to answer questions. She also doesn’t always know what’s hurting and had numerous ear infection as a toddler preschooler that we knew nothing about until she would spike a massive fever, throw up and was just about unconscious. She never tugged at her ear, could never tell us that her ears hurt. We do the best we can with the information we have and resources we have in that moment. And by resources I include physical, mental and emotional energy. We would never deliberately make a bad decision for ourselves or our kids. We are doing the best we can with what we have in each moment. Good luck with his ears!

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