APD

Angel is discussing plans for her birthday in July. 

Angel - But I don’t want to be thirteen.

Me - What age do you want to be?

Angel - 11, no two, no zero, no one minute old!

Me - And would you be with me?

Angel - Yes and then maybe I wouldn’t be having all these issues.

‘All these issues’. I didn't know it then but Angel has APD - Auditory Processing Disorder. Never heard of it? Neither had I! It means she finds it difficult to process language. It came to light via the ‘Fast Forword’ programme. Our moderator emails me;

‘We can now see that Kalya has a significant difficulty processing speech at the normal speed. This correlates with what we see in Jumper Gym. This will be having a major knock on effect to her ability to converse as well as her peers and also affects her literacy and comprehension. She is obviously very good at masking this as I remember you saying that nothing had really been picked up.’

Processing speech at the normal speed? I google it and find APD and LPD (language processing disorder). I email the moderator and she confirms it would seem Angel has APD and the next stage would be to get a formal assessment.

I am walking through the park with Angel 

Me - So the fast forward programme has thrown up some things about how much you can understand when people are speaking. When you are with a group of mates can you understand and follow the conversation?

Angel - No

Me - Can you understand anything in class?

Angel - No, not really 

Me - Can you understand me?

Angel - About 75% of the time 

Me - Can you understand Dad

Angel - About 50% of the time

Me - Can you follow films with lots of talking

Angel - Not really

I am flabbergasted. Floored. The ground is moving beneath my feet. How could I not know this?

Then I think about her saying, ‘Mum I have no idea what you just said,’ when I read out the geography homework on the pension crisis and the, “I am honestly really trying to understand what they are saying in class, but I just can’t.’ 

I thought it was because she was stressed, the work was beyond her, she came from a Steiner school where they teach in a different way, she was struggling with secondary school because of early trauma, when all the time she just couldn’t bloody hear?! 

It seems somehow slightly absurd.

Me - Did you understand in class in Steiner school? 

Angel - About 75% 

Me - Why could you understand there?

Angel - Because it was quiet and the teacher went slower

I can’t get over, "Why didn't she tell me?!”

Me - Did you know your friends could follow a conversation when you couldn't? 

Angel - Yes

Me - Why didn’t you tell me?

Angel - I didn’t know how to Mum because I knew I could hear, so I just couldn't explain it.

I sense her relief now that we know; that she has a name for it, even if she can’t pronounce ‘auditory processing disorder’ or understand exactly what it means. She knows she isn’t stupid. I tell her it isn't anything to do with intelligence and to tell me now if she hasn't understood something. I keep checking if she has too. Often it is a ‘nope’.  

I think of so many things now, each one a little stab at my heart not because of the thing itself but because we didn't know. It’s like reframing the last 10 years from a completely different angle. 

• She didn't always feel left out with groups of kids because she was adopted, it was because she couldn't understand what was being said. 

• It’s not that she didn’t want to watch more grown up movies, it was because she can’t follow the dialogue, so they were boring. 

• It’s not that she couldn’t tolerate not being the centre of attention at the dinner table, it’s that she couldn’t follow a conversation in the general hubbub.

• She could never tell you what she had learnt in school because she didn't know.

• She likes physical games because you don't need to hear so well to play them.

• Her best friends are all younger because their language isn’t so advanced. 

• She is still living in her imaginary world of play because she can’t really access the next level of growing up. 

• She isn’t interested in the news because she literally can’t process what is being said.

• She struggled to work independently in school and her need for clarification on directions wasn’t a lack of confidence but because she was never sure of the directions being asked.  

• Her innocence isn’t because she has been too wrapped up in her own internal journey but because she just can’t follow a lot of what is going on outside in the world.

Of course, I know some of the above may be the early trauma too but so much feels like it can now be explained by APD. And, again, of course the APD may be because of the early trauma. I can’t find any stats on APD in relation to adoption or trauma (apart from head injuries, in which it is very common). The most I can find is that they think it can sometimes be hereditary and is linked with middle ear infections in early childhood. No one really knows for sure why someone has it but I do think that as it becomes more known, there will be an avalanche of undiagnosed kids and adults that are unearthed, just like there has been for ADHD and other learning difficulties. In fact ADP Support UK (https://apdsupportuk.wixsite.com/apd-support-uk) estimates that up to 1 in 10 children have APD but because it is little known or understood it often goes undiagnosed or gets misdiagnosed as something like dyslexia. Actually, it isn’t even considered a learning difficulty, although obviously there are huge barriers to learning, it is a medical condition. According to APD Support it is 

‘an incurable, neurological condition that affects the way that the brain processes sound including speech……. and affects understanding what is heard, remembering what is heard, and more……..APD does not affect the hearing mechanism (ears etc) and it can also exist in people with perfect hearing as well as co-existing in those with additional hearing loss. In someone with normal hearing, speech is heard effectively. However, the brain plays a vital role in the hearing process. Without it, what we hear is just unintelligible noise - it has to be processed effectively by the brain in order to make sense. To put it simply, for someone with APD, speech does not always make sense. Speech can be jumbled up with bits missing or in the wrong order. Background noise makes it harder to understand speech and its effects can vary throughout the day. APD is a hearing disorder according to the World Health Organisation.’

I worry now that even her younger peers will move away from her as they grow into a teenage world that is inhabited almost entirely by chat. But I think also of the incredible person she is and realise this too may be, in part, because of the APD. She had to develop a whole array of other extra sensory perceptions to interpret language. That’s how she can spot the girl having a panic attack on the other side of the playground or the person who is feeling a little down and reach out a helping hand. She sees and feels more because she hears less.

This week I had a minor procedure. There was some unexpected bleeding after and just at that moment she called hubby from school in a panic about me! She feels tuned in on a cosmic level, our girl. It’s in her love of animals and their love of her and her happiness in nature, in the places where words don’t matter. I know all this and yet still I am grief stricken. I also know she will be OK because just look how she has managed so far! Our girl, who everyone always comments on how articulate and friendly she is. Still, there is grief to process. APD Support describe getting a diagnosis as 

‘There may be mixed feelings ranging from joy to confusion, validation to panic, and maybe sadness over a diagnosis that was needed and wanted, yet still dreaded. You might even feel grief for a life that will never be the same.’

And we haven’t even had the official diagnosis! But I know from talking to Angel that this is what she is experiencing. 

I think of the family therapist asking if she could follow instructions. ‘Oh yes’ I said, ‘Don't think there are any issues there!’ It’s surreal as I still can't quite get my head round how it can be so bad that she can’t follow a conversation with more than one friend and yet she has seemingly navigated the world so well.

That’s another thing that makes me cry. How hard she must have been working all this time to decode and we didn't know. 

I ask our lovely friend who did the neuro developmental reflex integration therapy with her if she can explain APD to Angel in a way she might be able to understand. ‘With APD when you hear a word like cat, you might hear the ‘a’ before the ‘c’ so instead of ‘cat’, you hear ‘act’. You then have to reassemble the words to make sense. Then if the person who was talking has said something more, you’ve completely lost the thread.

‘That’s it exactly!’ beams Angel, ‘And then if they throw in a word I don’t know, forget it!’

No wonder she’s so stressed at school I think, where with background noise and new vocabulary to contend with, her brain is working 1000 times harder than someone without neuro diverse challenges. But don’t get me started on the school. That’s for another day. 

We all have a lot to get our head around.