Tag Archives: paediatric audiology

Did you know it’s Deaf Awareness Week?

7 May

Blog Angus LBFDid you know this is Deaf Awareness Week? I have a deaf child and I have only just realised.

Initially I thought that the organisers had a pretty bad sense of timing planning it during election week but perhaps it was particularly astute.

As we neared election day it seemed that politicians would promise anything to secure a few more votes so by putting Deaf Awareness on the agenda this week maybe they have had to make some rash promises they’ll have to honour if they get into power.

Our deaf three year old is already suffering as a result of budget cuts. Two weeks ago we were told that his speech therapy was being taken away as his speech is where it should be for a deaf child.

The fact that it is nowhere near where it should be for a hearing child doesn’t seem to be an issue. Even though he is going to be entering mainstream education next year and will be expected to contribute to class in exactly the same way as his hearing classmates.

He has some great one liners but his speech is largely talking at us rather than with us. A bit like old people who compensate for hearing loss by holding court thereby avoiding having to have a conversation. That is not directed at my father- in- law. Honestly. *crosses fingers behind back*

The three year old also tells terrible lies. He came out with ‘daddy hit me’ last week when he got told off for something (I can’t remember if it was treating the fridge as a climbing wall or scaling the bookshelf) and came running to  me for comfort.

I can only hope the social services budget is cut too so no one listens to the few words he does say too closely!

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Decision made. Introducing Brownlee Donald Associates.

8 Nov

Home fire burningSince we were told that our office was closing at the end of the year and being absorbed into what is now Penguin Random House I have gone through every possible emotion. Denial, grief and anger have all raised their heads but I’ve finally reached acceptance and it’s great. I’ve contemplated every possible option and have come to the conclusion that working for myself in an industry I love with contacts made over 23 years in the business is without doubt the best way forward.

It also gives me the flexibility to work from home thereby walking the 2 year old to the childminders every day, splashing in puddles, kicking piles of leaves and generally dawdling and still be at my desk earlier than I am at the moment.  It means I can light the fire on cold winter nights and the 11 year old can come straight home and get on with her homework instead of standing shivering on the doorstep waiting for us to get back as has happened on a number of occasions recently.  It also means I can decamp to our island idyll of Islay and let the children run wild in the summer while I continue business as usual. I am so happy and strangely confident about what the future may hold.

My happiness is enhanced by the deaf 2 year old who has now been given the much sought after ‘dangly thing’ which I now understand is a ‘radio mike’ and has ‘FM receivers’ attached to his hearing aids. The new aids are enormous and look rather clumsy but the effect on his attention span has been immediate and instead of disrupting Book Bugs and Daisy’s Music Time he is now participating with enthusiasm.

The 8 year old is making me smile too.  After years of my insisting that the Times Table app on the iPad is in fact a game her mental arithmetic is second to none and she is sailing past the boys in top group in her Big Maths / Beat That test every Friday – much to the surprise of her parents and teachers. Download it. I can’t recommend it highly enough.

So looking forward things are pretty good in the Sleepless household.   The 8 year old is currently at a sleepover.  The 11 year old is at the cinema with a friend who is coming back for the night. Their social lives are far better than mine. Last Sunday I let the girls sleep in to recover from a hat trick of late nights which had begun with Hallowe’en. They eventually woke up at 1pm in the afternoon.  When I wrote my first Sleepless in Suburbia blog all those years ago  I couldn’t imagine a time when they might sleep through the night let alone through the day. Life is constantly changing and at the moment it seems to be changing for the better.

Making deaf friends

4 Oct

trampolineThe deaf 2 year old and I have just had the most lovely morning.  Normally Fridays are spent dashing round to see local friends for coffee or waiting in trepidation for a visit from our Teacher of the Deaf.  This morning we were home alone but instead of insisting on watching ‘CBeebies’ , rampaging around the garden or firing his cars up and down the room the 2 year old consented to milk and a story.  He normally wriggles off my knee in seconds but he cuddled his dinosaur and I read The Littlest Dinosaur by Michael Foreman. Twice.

The morning just got better. I keep in touch with friends we met at sign language classes but we haven’t seen each other for over a year.  They have a deaf 8 year old and a hearing two year old so have the same big gap as we do and understand the deaf issue.  It was so good to have a play date with someone who identifies with what we’re going through and to see the two boys interacting.  Yes their 2 year old has better vocabulary but the different wasn’t massive and it was clear they could understand each other.

I loved being able to share anxieties about the care we are getting and I suddenly feel ready to take on the world. Instead of moaning that there is no provision for family sign language classes I am going to fight for them. Instead of worrying that if and when we go down the private school route we lose the radio aids which will help him hear his teacher I’ll fight to change that rule before it becomes an issue.  You wouldn’t take a wheelchair away from a disabled child if they entered private education I can’t understand why they take hearing aids away from deaf children if they do. But they do. Not the whole aid. But the extension which allows them to hear their teachers microphone in class. Simply because responsibility for the provision has moved from the Health Authority to the Education Authority.

I have always been slightly amused by the extension / microphone combination.  When our baby was first diagnosed as being deaf I asked our then 6 year old about the deaf child in her class.  She was completely unphased by his being deaf and just told me that the teacher has to wear a funny thing round her neck which means that the deaf child can sometimes hear her going to the loo if she doesn’t switch it off.  When I asked the teacher what the thing was (not mentioning the fact that the entire class listen to her going to the loo) she said that it’s a microphone linked to his hearing aid which enable him to hear her over all the other background noise but admitted that she finds it particularly useful when the children are at the far end of the field and she can quietly ask him to round up the other kids while her colleagues are screeching at their classes to come back.

We have only just been offered the extension and microphone and I was slightly anxious to hear that the reason one was available was because a deaf child had left school so was no longer their responsibility.   It seemed cruel to be chasing the family for the return of equipment which clearly enabled her to hear simply because she was making the transition from school to work. Surely it will be just as useful there, or at the gym or at any other form of class she might take in adulthood.

Meanwhile however I am just enjoying every day.  It was a joy to watch him chatting to his new friend today, dive bombing down the slide into a puddle of water at the bottom and the pair of them laughing hysterically on the trampoline. He is an utter delight and I will do anything to make his life as happy as he makes mine.

After Death and a Deaf Diagnosis, Redundancy will be a doddle – I hope.

2 Mar

santa outfitI was told this week that the company I have worked for for the last 16 years is closing its doors at Christmas. At any other time redundancy would have been a body blow but having coped with the death of my father and my son’s deaf diagnosis the news didn’t hit me as hard as I thought it would.

It has been a good week. On Monday I was interviewed on BBC Radio Scotland and met the charming actress Gerda Stevenson, on Tuesday we heard that my 10 year old had been accepted to the school of our choice and on Thursday my 1 year old had a great audiology test which showed that his hearing is back on the moderate / severe borderline it had been pre glue ear in the Autumn. On Thursday afternoon I was made redundant.

When my bosses asked me to go to see them I naively thought they were going to offer me a pay rise. However the fact that all other senior managers were filing into the office too and the grim expressions of the founders showed it wasn’t going to be a happy chat.

We sat in stunned silence as they told us that after 35 years at the helm they have decided to close the office at the end of the year. It’s not that surprising. They are both over 60 and Random House bought 50% of the company over 7 years ago so subconciously I have probably been preparing for redundancy since then but I really hadn’t expected it now.

Some years ago I swithered over going for voluntary redundancy. I’m very glad I didn’t. Since then I have shared the excitment of developing our e-book programme, entered the fast moving world of digital marketing, travelled to Guadalajara, New York and Frankfurt and returned to my publicist roots. I’ve had a ball.

Only last week my daughter said she didn’t want me to ever leave Mainstream because I worked with such a great team. I do.  I know that I have transferable skills and am confident that when my job comes to an end at the year I’ll find something else to pay the new school fees but I’m not sure I will ever find an office where laughter is so prevalent, or where the Christmas present of choice is a saucy Santa outfit.

I’m sorry that the company is closing but I’m so happy that we had a positive audiology test and that my daughter passed her entrance exam that I cannot be too sad.  My children have proved themselves, now it’s my turn to show that I can prove myself too.

From severely deaf to profound in two tests

26 Jan

angus ears and shoesTwo weeks ago we had an extremely disappointing audiology test result. Two days ago we had an even worse one. I have always hated audiology tests. The task of keeping an active child sitting quietly for nearly two hours is almost impossible and upsets me almost as much as the results themselves. I have therefore long since delegated responsibility for those hospital visits to my husband. When the recent results were so poor we were asked to go back much earlier than usual. He couldn’t take the time off again so I had to bite the bullet and with a lump in my throat and tears in my eyes take our 18 month old boy along for an 8.45am appointment.

Still full of the cold he frustratingly had a really bad night and we were both fully awake from 5.30am which didn’t bode well for a good peformance at the test. He cried all the way there as I tried to plug him with a rapid succession of milk, carrot sticks and dummy as much to appease the grumpy commuters as to comfort him. However on arrival at the audiology clinic he suddenly perked up. Having been going there regularly for his whole life it must seem reassuringly familiar and he looked genuinely happy to see our Teacher of the Deaf, the Educational Audiologist and the Audiologist who were going to conduct the test.

He sat patiently while they removed his aids and did the tympanometry test which revealed both ears to be completely flat. Children with normal hearing who have similar results often require an operation to insert grommets to cure ‘glue’ ear but as it was only diagnosed two weeks ago we have to wait and see if the levels improve once his cold gets better.

To my delight he didn’t mind at all as they prodded his ears and seemed quite prepared for the audiologist to attach tubes to his ear moulds then reinsert them with crocodile clips attached to his top to stop them falling off. As he was on my knee he couldn’t see me at all but I could see his face with wires surrounding it reflected in the dark glass of the studio where the educational audiologist was playing sounds of varying levels directly into his ears. I knew the test wasn’t going well when the only sounds he was turning to were the ones which were so loud I could hear them emitting from the moulds. He was unaware he was being tested and happily watched the toys the audiologist was distracting him with until a noise prompted him to look to his right or left. The idea is that when they look round they are rewarded with a cuddly toy appearing inside a light box but my wee man kept looking round regardless of whether or not there was a noise, no doubt perplexed at the sudden appearance of a zebra / sheep / lion in the room.

I was so proud of his performance and willing the results to be better than I had hoped but when the educational audiologist emerged from the darkened room and plotted them on a graph to show us the levels he was hearing at they were dramatically lower than his best tests last summer and depressingly even lower than the bad tests two weeks previously.

At my most positive I know that the glue ear will in all likelihood clear up eventually and his hearing should return to his normal level then but at my most negative I’m aware that as long as he is profoundly deaf he’s not picking up sound in order to learn speech and we’re losing valuable time.

The audiologist tried to be positive and put volume controls on his aids so that they increase the sound levels he can pick up but when she tested with them at level 3 he wasn’t responding and she had to crank them up to the maximum.

Volume controls just add another complication into our hearing aid maintenance regime. However they do seem to be helping a bit. For the first time in weeks he is responding to our standard tests ‘hands on head’, ‘peekaboo’, ‘kisses for daddy’ so we know that when he has them in he can hear something. The problem remains that when he hasn’t got them in, in the bath, when he pulls them out during the day or first thing in the morning, he can’t hear a thing.

In all other respects he is a completely normal little boy. He’s happier than I remember any of the girls being at his age, loves playing with cars (particularly opening the log burner and putting them inside), has a particular fascination with light switches, squeals with delight when he sees his sisters, has just discovered that if he opens the oven door he can stand on it and dismantle the hob and having finally mastered walking will toddle for hours up and down the room shrieking with laughter.

I bought his first shoes last week. He was a size 6. School shoes start at 7. Had I left it any longer his first shoes would have been black Clarks lace ups. At 18 months most of his clothes are already aged 2-3 and his shoulders are so broad he’s going to make an excellent prop at rugby one day.

He really has everything going for him apart from his ears – and possibly his speech. Over the Festive period I blocked out the fact that he was deaf and just enjoyed watching him take such pleasure in all the activity – and light switches – associated with Christmas.

The January audiology tests have brought us back to earth with a bump.

A Walk in the Park or a Cage in the Zoo?

14 Nov

 

Boys on swings

Baby boys in the park

As my deaf baby I want to wrap my one year old in my arms and never let go.  As my little boy I have to face the fact that he wouldn’t stay there for two minutes and a cage might be a better option.

I’ve never been one for gender stereotyping. We dressed our first daughter in pale blue until she learned to speak and demand pink. We bought her train tracks and duplo. She hated them. Our second daughter inherited a series of hand-me-down pink dresses and barbies but I never saw her as overtly girlie. Until I had a boy.

We have lived in the same house for 7 years. The 7 year old used to bottom shuffle around the house pulling the occasional magazine off the table but never gave me the same heart-in-mouth moments that her wee brother gives me on a regular basis. The socket covers we’d bought for the first child always seemed like a marketing con. Now we’re ransacking drawers trying to find them. The 1 year olds morning ritual is to unplug my iPhone from the charger and stick the live wire into his mouth. Instead of playing with the toys inside the toy chest he climbs on top of it and bangs his hands on the glass threatening to shatter the window. Even the loo has become a climbing frame leading to unsupervised water play in the wash hand basin. I am living on nervous energy. All those hours spent at gyms and pounding the pavements are no longer necessary with my baby accelerated metabolism.

If I’m anxious at home I’m completely fraught when I’m elsewhere. At half term a 5 hour train journey from Edinburgh to Derby was one of the most stressful journeys I’ve ever experienced. I doubt even Michael Palin could ram himself into an airline seat on a packed train, unable to reach the snacks and toys brought along as distraction techniques thanks to the fat person in the next seat and find something entertaining in the experience. The only positive to be extracted was that after a couple of hours the women in front who had clearly started drinking when the train left Glasgow could no longer feel the pain when the 1 year old leaned over the seat to pull their hair.

Outwardly he is an absolute angel. Everyone comments that he is the happiest baby they have ever seen – possibly because he can’t hear the banshee he has for a mother.  At toddler group he is universally adored, the hearing aids make him seem vulnerable and cute when in fact he is anything but. It is only people who have to spend any length of time with him in enclosed spaces who understand my pain. The childminder has taken to lying her kitchen chairs on the floor before he uses them to climb on to the table and another friend, who has three children, two of whom are 3 year old twins, looked visibly relieved when we announced we were leaving first thing after an over night visit during which he trashed what she had previously thought of as a baby proofed home.

The fact that he is so obviously a fit and healthy little boy makes it all the more difficult to accept that there is something wrong with him.  I’m fine with the hearing aids but I still hate the hospital appointments.  We have the next big audiology test tomorrow morning. I’m not going. Even though the results were good last time I can’t bear the thought of him struggling against being held and failing to respond to tests because he’s crying so loudly.  I’ve also body swerved an appointment with our new speech therapist. In the summer I was buoyed by the fact that he could hear us and was responding to speech even without his hearing aids but I’m painfully aware that he’s not saying proper words yet.

I don’t really mix with parents of children the same age so was taken aback at a meeting in London earlier this week when a colleague said that her baby (born at the same time) is constantly shouting ‘park!’. I’d never even thought that our deaf baby should be at the stage of saying that.  Though it has to be said that I’ve hardly ever taken him to a park either.

Perhaps the logical solution to the vocabulary expansion and house devastation would actually be to take him to one.

 

National Deaf Awareness Week? How did I not hear about that?

8 May

Slightly appalled to realise today that it’s National Deaf Awareness Week.  As a new member of the deaf community I’m not surprised it’s not a date which I’ve registered before. It’s taken me years to remember World Book Day and I’ve been working in publishing since before World Book Day was launched. What surprises me is that I’m so immersed in all things deaf that I can’t believe no one else has mentioned it to me.

In the last four weeks I’ve seen our Teacher of the Deaf, our Speech Therapist, visited hospital to pick up temporary hearing aids (our 9 month old baby had chewed his other ones), visited hospital to get new hearing moulds, visited hospital to get more temporary hearing aids (he chewed the replacement ones!) and spent the last two Saturdays at sign language classes organised by the National Deaf Childrens Society but no one has mentioned it at all.

There is always the possibility that we were informed about it at the Sign Language Classes and I simply didn’t understand. But I don’t think so. The chat after only two weeks is limited: ‘My name is..what’s your name?’, ‘I’m fine, how are you’ and to my utter horror sharing with the entire class how old we are. In spite of that mild horror I’m really enjoying the Sign Language Classes. Unlike the weekend for newly diagnosed deaf parents which we was populated by parents of deaf babies who were as shocked and upset as we were, the Sign Language Classes are attended by parents of 5-16 year olds who have had time to come to terms with their diagnosis. It’s such a relief to see that their children are just normal children. Shy little girls, sullen teenagers, exhibitionists, the same sort of kids you’d get in a cross section of children who weren’t deaf.  They’re probably more bemused by me. I go along with my six year old who hasn’t got a hearing problem at all and our amazing childminder who gives up her Saturday mornings and time with her own family to learn sign language to communicate with mine.

It’s strangely liberating being in a class for two hours where no one speaks at all. The charming teacher told us by writing on the board that Sign Language is his first language and and since then has communicated only by tapping out the alphabet on his fingers and using gestures. In any group situation I’m normally the class clown but deprived of the ability to speak I’m sitting back and soaking up the experience. I’m also loving the opportunity to bond with my six year old child every Saturday morning.

When our baby was diagnosed I worried about the effect it would have on the family, particularly that as the middle child our six year old would suffer. I would never have thought that our baby being deaf would bring us closer together. But it has.

I would still give anything for the deaf diagnosis to be a terrible mistake. I still cry whenever I think what it might mean for my baby. But on a day to day level life is not that bad. He doesn’t know any different and with the support of the various charities and our amazing friends and family we can see a bright future. Who would ever have thought that Sign Language Classes would be one of the highlights of my social calendar?!

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