Falling on Deaf Ears

A mother's instinct is usually right. This is my story of the battles, the appointments, the snide comments and coming out the other side. Oh, and anything else to do with life.

First shock. Will it be the last?

English: Graphical representation of frequency...

 

Thankfully, we only had to wait a couple of days following the SALT appointment, before we were in Audiology. I took the diagnosis sheet with me, explaining my concerns and what had been discovered so far.

 

I also explained that I thought his hearing was fine, but there were questions over Auditory Processing. The Audiologist initially agreed, saying that an ABR would most likely be appropriate.

 

But the appointment didn’t go as I had hoped. At the end of the session, she came to me and showed me the results. Okay, so they could be worse, but it was bad enough for me. She showed me that his left ear was clear and fine. It was his right ear that gave the cause for concern. There was fluid and he had mild to moderate hearing loss. We were told that this is most likely Glue Ear, but in the light of the results, further investigation would be needed.

 

This was a shock, as you can probably imagine. I was expecting nothing worse than irregular Brain Response, and now I’m told my son has difficulty hearing in his right ear. Go figure! Since learning this, it has become more obvious. The word ‘what’ is used by him more when I am on his right than his left. It is pretty constant, so I can imagine what will happen when he goes back.

 

Talking of which, we got his Audiology report through the post. It said scary stuff like ‘bone conductive in nature’ and stuff! Thankfully, I had the expertise of the NDCS Audiologist, who explained that it would be checking the cochlear, and although she thought that my son might be a little bit young for this, it was not uncommon and was completely harmless.

 

At least now I ha most of my answers, and we could begin to deal with the problems we faced. And perhaps, the fight would be over now. Wouldn’t it?

 

 

 

 

 

P.S. I am in this month’s copy of Essentials magazine, saying how it is important to follow your instincts. It is out in the shops now, so go buy it! Now!

 

 

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And so it begins

Yoshi

Yoshi (Photo credit: Wikipedia)

The results from SALT were not as bad as we had hoped, but not as good either. I hoped that I would be told that he was low end ‘normal’ (Feel free to offer a description of normal in the comments!). Instead, I was told that he has definite Auditory Processing and Memory difficulties. Meaning, when he is spoken to, he might not understand, and if he does, he might not be able to remember.

One way of showing this was on the day of his diagnosis. There was a box, cut out to look like a post box, wrapped in gift paper that had pictures of the Mario Bros characters. A big fan of Mario I asked my son who was on the paper. He identified Luigi and Mario effectively, but could not identify Yoshi. As Yoshi is his favourite,  I knew that he was facing difficulty. I said the first letter and he remembered.

I was told by his therapist that the information going in was not stored properly, and this is why we were having difficulty. Also, he was incapable, ‘physically’ of remembering a set of more 5 or more instructions.

I am pleases to say that this diagnosis drastically improved our lives. I no longer have a child on the verge of tears because he can’t remember and I am being forceful, because I have the knowledge and understanding now that it isn’t my son being difficult or naughty, despite what his teachers say!

And that was the ‘best bit’. When given the results, his therapist told me that people will probably say he is naughty and doesn’t listen. It is sad for me to say that even now I get that, even those that know this isn’t always the case.

All we needed now was to get to the cause of the processing difficulties. I hoped it wouldn’t be long.

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The Beginning of the End?

At my son’s second SALT assessment, I was told that there was evidence of a definite communication difficulty. This wasn’t a diagnosis, but it was what the therapist had picked up on. She wasn’t saying how severe it was, but we had to return for a formal diagnosis. We hoped that we would be told that he was bottom end of normal, as we were advised this was a possibility. It wasn’t the end of our worry, but it was consoling to know we weren’t 100% bona fide crazy! 

We still hadn’t heard from Audiology, and the Speech Therapist was on our case. We needed to know that there wasn’t a hearing loss, though I assured her that my son could hear fine. I duly chased it up, following a nice relaxing holiday.

 

Again, Audiology told us that the referral had not come through. By now, I was really fed up and not very happy with what was going on. I wanted, or rather needed answers, and I wasn’t going to get them if my son wasn’t assessed properly! I marched to the doctors, having got numbers and names from Audiology, and made it clear I was not moving until they referred my son properly and appropriately to Audiology. There was evidence in my son’s file that he should have been referred, but I explained he hadn’t. Thankfully, on this occasion, he was correctly referred, and we had his appointment through in a matter of weeks.

 

In all fairness to the Audiology department, they did bump him to the top of the list, where he would have been had the referral gone through properly in the first place, so we didn’t have to wait an excessively long time.

We got the results from SALT the week of my son’s Audiology appointment. 

 

They were bitter sweet.   

I failed to understand that answers wouldn’t mean diagnosis, and that this would be a long, bumpy and emotional ride.

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Getting Answers

English: Speech-Language Pathology

Although my son had now been referred, the end of the road was certainly not close.

Within a week or two, we had a letter from Speech and Language Therapy(SALT) saying that we were to call up to make an appointment. I duly did so and my son was seen by SALT within a month of the referral.

I waited patiently for Audiology, as he had also been referred there. A month went by, and we heard nothing. In that time, my son did seem to suffer a total hearing loss. It didn’t accompany a cold, but it was the week after mine and my fiance’s birthday party, where we had a live band. Again, I spoke to my friend with the deaf child, who said that more than a day or two was not a good sign. We went back to the doctors, saw a different doctor, who was going to refer him to Audiology. I said that there was no point, we were already waiting to hear from them. The doctor told us to not hold our breath.

Starting to feel stressed out, and wanting answers, I got the number for Audiology. I spoke to a lovely lady on reception, who hadn’t heard of my son. I called my GP surgery. They had referred him, at the same time as SALT. I called Audiology back. My son needed to be re-referred – referring for SALT and Audiology on one form was the problem. It seems the two disciplines don’t communicate very well. The lady at Audiology spoke to my GP Surgery, and it was all sorted. So I thought.

 

In the meantime, my son had his first SALT appointment. This was the start of the journey back to sanity. I was told that his speech was spot on for his age, but his understanding and comprehension needed further assessment. Phew! I was right. Something wasn’t quite right with my son. I wasn’t happy something was wrong, but I was happy now that I finally felt listened to.

 

It’s a strange feeling. When you want your child to be okay, but are convinced something is wrong, and finally you get told you are right. Being happy is not the right way to describe it. But we can’t change what is happening. Getting help was what we needed. And to get the right help, we needed answers.

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