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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Not Unique

Physician of tomorrow

Following on from the conversation on the Forum, I sought advice. I firstly looked on the internet for anything to do with Auditory Processing Disorder (APD). There wasn’t a great deal, but what I did find, I found incredibly helpful. It was describing my son impeccably. So I went and saw a friend who has a deaf child, asking him what I should do next.

He pointed me in the direction of the NDCS, who were very helpful….in fact, they still are! After speaking to one of their Audiologists, I knew what I needed to ask for at the doctors. The Audiologist e-mailed me the advice that they gave me, so that the doctor would take me more seriously (I am trying not to laugh as I type this!). I printed off the e-mail and took it with me to our first of four doctors appointments. The first doctor said that he should have a hearing test at school, and that we would take it from there. My son had, and passed the school hearing test. I went back to the same doctor, who told me that he could obviously hear okay and that he chooses not to listen. He did ask ‘Glue Ear’ questions, such as whether I noticed that he could hear better when he didn’t have a cold. I told him that wasn’t the case, and a quick look in both his ears showed that his right ear drum was dull, but otherwise all was okay. I went home and I cried.

I went back to another doctor, saying pretty much the same thing. This time I was told that my son would grow up to be very successful, because he doesn’t listen to others, and is very strong minded, and so what if he grows up arrogant and ignorant of other people? He doesn’t listen when out and about because he is having way too much fun! Again, I went home and cried.

I decided to try at the doctors one more time. If it failed, I would have to find a doctor that would listen to me elsewhere, or pay to go private. I was that convinced that there was something wrong, I would have done whatever it took. On this fourth appointment, I took his red book, which showed there had been issues since the age of two, and a questionnaire I had found which can be used for guidance and whether APD would be probable. This time, the doctor listened to me and referred my son for assessment.

 

I can’t say I was glad, but it was a relief to be listened to, finally! But, as I had been going through this process, I was learning that there were other parents out there with children with ‘invisible disabilities’ where professionals were ignoring their plights for help. The other parents I encountered were from all walks of life, and like me, they were being treated badly. They felt, like I did, that people thought that the problems were once in a while occasions, not the constant every day battles that we were facing. Society also seemed to think we were looking for scape goats for our child’s misbehaviour. We weren’t. We were looking for answers. Looking for ways to deal with the behaviour we were presented with. Wanting to be heard.

I think this will always be a problem. Even now that we have some answers, I still get well meaning people asking me if I have tried this, that or the other. I still don’t get taken seriously that my son has a problem, and that it is not my parenting.

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Fast Forward

release  229/365

My last post, I left you lingering in the past. When everything stopped. In fact, after Reception, not a lot happened. I accepted my fate of having a child I could not control when out and about. At home, he was as good as gold. But put him in a noisy environment, and it was hell. I may as well have not even tried. The teachers were having difficulties with him.

In Year 1, the teacher was fabulous. She would come to me, stressed after a day of teaching my son, who just ‘would not listen’. We tried everything. She moved him to the front of the class. We muddled through. We had no other choice.

In Year 2, there was pretty much more of the same, but after the first term, the teacher had decided to give up on him, calling him naughty, and saying he just does not listen. At one point, I was told that he was choosing not to listen.

Also in Year 2, we lost a pregnancy very early on. It was this awful time that someone shone a light for me. I found a group on Facebook, an off shoot of The Miscarriage Association. Myself and another woman who had suffered a loss were discussing our difficult children. We had a lot in common. Our boys had the same name and undiagnosed difficulties. We felt bad, thinking that as we couldn’t raise the child that we had, so we didn’t have the right to have another baby.

(Before I carry on, I will say that things are moving in a good direction for her now. Her son and her are getting help and she is pregnant again, and past 12 weeks.)

Whilst in the self-pity, someone popped up and helped us, saying we weren’t the awful parents we thought we were. I was told that it sounded like my son had Auditory Processing Disorder (APD). I read up on it, and it sounded very much like it. I found some sites, and some professionals, and the more I read and researched, the more I felt that my son had undiagnosed APD.

This all came to a head in January/February this year. And it went downhill from there, and only now am I coming out of it the other side.

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A Catalogue of Errors

English: Speech-Language Pathology

Before I get to the nitty gritty in this post, I will point out that I don’t wholly blame ‘the system’ for failing me and the boy, but I was naive, and not trained, and more could have been done at the start.

It all began when the boy was 2 years old. He had the usual development check. It happened in November. The health visitor asked me about his speech, whether strangers could understand him etc. I said not all the time. After the evaluation, she said he would need a Speech and Language (SAL) full assessment. I didn’t argue, if that is what she thought was necessary. But I didn’t think it was. I mean, he was only 2. Of course his speech wasn’t excellent.

There was my first mistake. His speech wasn’t excellent, but had he had the full assessment, I would no doubt have been told that his speech was fine, but his understanding wasn’t. Mention SAL to anyone, and they think that it is wholly to do with Speech. It isn’t.

Well, that assessment never happened. Why? Because we moved. We moved out of the area but not out of the NHS Trust. At our new doctors, I mentioned the referral, would it still come through? Yes, I was told. It didn’t. I didn’t chase it either.

At 3 (ish) he had another assessment. Here, they picked up on his poor understanding and comprehension (again). I mentioned this wasn’t new, but nothing ever came of it. Still, nothing came of it, but it was noted in his Red Book.

Fast forward: We move again, I don’t mention the problems to the new Health Visitor. At this point they weren’t a major issue. But I was noticing his behaviour was different to that of other children. Discipline that worked for most other children, just didn’t work with the boy. He complained that he didn’t hear or understand. As I looked into his eyes, I could see it was the truth. Also, his response to us calling him or talking to him was unusual. It was as if he wasn’t there in mind. What we said wasn’t registering. We thought we were going crazy.

That was until, one day in Reception class, his teacher pulled me to one side and said that she thought the boy couldn’t hear, did she have my permission for the school to do a hearing test? Well, I could hardly contain myself. Yes, of course teacher. Do it!

She did. The boy passed the hearing test, but they thought he needed referral to SAL. See the pattern? I asked the teacher what she thought. She said his speech was fine and saw no need for it.  I took her word and didn’t pursue it. After all, she is the professional. Why wouldn’t I believe her? I have since learned that that teacher is the Special Educational Needs Co-ordinator (SENCO).

This has been a long post. But I hope you are seeing the problems faced, but my story is far from unique. I am a parent, who listened to the professional. As you will learn, professionals don’t always know it all.

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Hello and Welcome

Louise Bourgeois with her sculpture To Fall on...

Hello, and welcome to my new Blog.

Before we begin, for those who have not read about it, I will say why I have started ‘Falling on Deaf Ears’.

 

It is a place for me to put out there the experiences I have – and have had – as a mother of a child with difficulties. I thought it was Auditory Processing Disorder. It might still be. But I thought a lot of things.

 

The only thing I have been right about so far is that there is something not quite right with my child.

 

My child is a 7 year old boy. He is a typical boy in many respects. But I always knew he was different. We have had struggles for 5 years to get where we are now.

 

And where are we now? We are still on our journey. We are hoping and praying that there is a simple and quick fix, whilst being open to the possibilities it might be more permanent. We have a teacher who is being pro-active, and putting the boy on the Special Needs Register and writing and Individual Education Plan (IEP). We aren’t close to the end, but we might be closer than we think. All we know for certain, today, right now, is that the boy has Auditory Processing difficulties – cause unknown – and hearing difficulties in the right ear – cause unknown, but persistent glue ear being the most likely culprit right now.

 

I will be singing the praises of the National Deaf Children’s Society (NDCS) almost constantly, because without their support, I don’t think we would have gotten as far as we have.

 

And, just for good measure, I will be writing about everything else, to do with parenting and life, and school, and work (or lack of it). I will whinge, moan, scream and celebrate.

 

I also hope to offer comfort to others in a similar situation to me. Whatever the disability, however permanent, it is still a big shock. So feel free to share your experiences with me, and if you are brave enough, with the other readers.

 

So hello, and here is to a long lasting friendship.

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