Tag Archives: NDCS

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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Filling in forms. And more forms. And more forms….

5 Sep

Happy FamiliesMy life seems to be an endless cycle of form filling. Paperwork for my new company. Entry forms for athletics competitions. Permission forms for the girls various activities. Emergency contact forms for our sons nursery.

But the most challenging are those associated directly with his hearing loss.

When our baby boy was first diagnosed as being severely deaf we were told to apply for Disability Living Allowance.

I remember filling in the forms through a mist of tears as I was forced to confront the realities of what the future held for him before I’d come to terms with his hearing loss in the present.

Six months before his 3rd birthday we received the forms to fill in again. I hate being forced to confront the realities of his disability and prefer to focus on the fact that he’s only 70% deaf but 100% boy.

For months I didn’t even read the forms and they languished on my desk getting buried under more forms until I finally plucked up the courage to tackle them.

Surprisingly it wasn’t as hard last time. Largely because the worst case scenarios we could only imagine when we were holding our deaf baby in our arms are now a reality. A reality we are coping with. Most of the time.

But then the letter came back from the DLA. Clearly to be seen to be coping is not a good thing.

We have been unsuccessful in our application.

Not only that if we want him to retain any benefits at all we have to fill in further forms. The same information transferred to a different form. Filled in by hand. 42 pages in total.

More anguish. More admin. More asking the professionals who work with him to write letters of support. More anxiety for us. More work for the people at the DLA.

I fail to understand who benefits at all . In fact I am slightly in awe of anyone with the patience and persistence to commit benefit fraud.

It’s tempting not to apply at all but we are constantly being told of ways in which we can improve life for our deaf 3 year old.

Whether it be adapting the room at his nursery to improve the acoustics, getting private speech therapy to supplement the state supplied therapists who are on a constant round of maternity leave, paying for one to one swimming lessons instead of the group lessons where they sing nursery rhymes he can’t hear or paying for the whole family to learn sign language.

All of them are lovely ideas but all of them cost money. So we plough on with the applications and hope that he will get the DLA. It’s worth the endless form filling and anxiety if it will improve the life of our otherwise happy and content deaf wee boy.

Charity begins at home

17 Jun

moonwalk finalIt’s all about sponsorship at the moment. Husband missed Father’s Day weekend entirely as he was doing the Caledonian Challenge in the Highlands. The week before I spent Sunday in a zombie like state having spent all night doing the Moonwalk. The plus side is it makes lots of money for worthy charities. The downside – apart from losing a weekend with the children – is then being beholden to everyone who sponsored us to sponsor them back.

It reminded me of the concept of ‘pay for your own leaving present’ which I thought up as I stuffed another fiver into an envelope knowing I had put so much in to leaving presents over the years I’d never make it back when I finally left the company. I came up with the inspired idea that any time anyone leaves everyone should put cash not into the whip round envelope but into their own leaving fund. As the company gets ever closer to closing the Edinburgh operation and it looks like I will be one of the last men standing I wish I’d introduced it.

I was in two minds about asking friends to sponsor me for the Moonwalk. I dream that in years to come I’ll do something bigger and better to raise money for the deaf charity which is so close to our hearts but know that if I hadn’t had the sponsorship to motivate me I might never have made it to the start let alone the finish.  I was astonished by how generous everyone was and particularly by the random people who responded to my Just Giving plea, the first of whom was a boy (now no doubt old and balding man) I haven’t seen since I was 16.

The 10 year old was keen to participate in the Race for Life at the weekend and I dissuaded her as I didn’t want to be asking the same people for sponsorship so soon.  When I saw a photo of two of her friends beaming with pride holding their medals I felt very guilty but was relieved when she went to swim club and was given a medal of her own for a recent gala.  The 8 year old loves nothing more than taking things like that into ‘show and tell’, this week she has an embarrasment of riches. My Moonwalk medal, her father’s Caledonian Challenge medal and her sister’s Swim Club medal. Who would ever have thought that we could earn the moniker of the ‘fit family’?!

The fittest however is not the mother who walked 26.2 miles through the night, nor the father who walked 54 miles in some of the roughest terrain in the Scottish Highlands, not even the girls who spend every waking hour playing hockey or at swim club but the 1 (nearly 2) year old who entertains himself by doing push ups between his cot and bunk bed, free climbing up bookselves, vaulting the poles beneath the slide, bouncing on the trampoline and backflipping (still wearing hearing aids) into the enormous paddling pool. His energy knows no bounds and he is scared of nothing. Apart from sand. That is going to make our summer holiday on a remote beach in Islay an interesting experience.

Sleepless on the Sleeper

17 Apr

photo(3)Since the toddler’s latest illness our steely resolve to stick with controlled crying has faltered.  It doesn’t help that I have been away for work so much that I either use the fact that I am poised to depart as an excuse to pick him up, or the fact that I have just got back.

As usual the trips away give me an opportunity to catch up on much needed sleep although I spent my night at the surprisingly luxurious Holiday Inn in Media City clock watching worrying that I would sleep in without a crying baby to wake me.  Thereafter I was holed up at a friend’s house in Barnes where her rather cute dog, strangely similar to the toddler in terms of mannerisms, took on the role of my living alarm clock.  This morning it was the turn of a train guard as, post back to back meetings at the London Book Fair, I caught the sleeper and had a blissful sleep until the 6.45am knock on the door.

Today we had a power cut, interestingly during Margaret Thatcher’s funeral. I immediately suspected protest groups had sabotaged the national grid but it was nothing so exciting. Power off, our burglar alarm screeched into action and I had no way of switching it off.  I could see my deaf baby pulling at his hearing aids, perplexed that the strange noise was being caused by them. I removed them and alarm still screeching through his bedroom window was able to put him down for his midday nap, oblivious to the ear splitting noise outside.

I’m so grateful when he sleeps that I sometimes worry that I wouldn’t notice if anything terrible happened.  I daren’t check on him in the night incase I wake him up and on the rare occasions he’s still sleeping when I get up I am just grateful of the opportunity to have an uninterrupted shower.

I thought the risk of cot death disappeared at around 6 months when babies are capable of rolling over and parents are encouraged to put them into their own room.  I was therefore shocked to be at the This Morning studio last week and hear a mother telling of the agonising discovery that one of her 18 month old twins, who she thought was sleeping after a broken night, had suffered Sudden Infant Death Syndrome.  Tears rolled down my cheeks as I listened to her describing how her child had lolled over the arms of the paramedic who carried him to the ambulance. The inquest was inconclusive. They were on television promoting the Lullaby Trust, the charity which supports anyone affected by a sudden infant death. They couldn’t praise the hospital or the charity enough.

The NHS has again proved itself in our eyes as our baby boy lost one of his hearing aids just before Easter.  He was only forced to run on one engine for 24 hours before they had replaced his high tech clear aids with standard issue beige ones. They may not be quite as stylish as his bionic ears but frankly I’ll take any colour if it means he can hear.

I have returned from my latest trip away to discover that the 10 year old has taught him how to say ‘rain’ – a useful word when you live in Scotland – and I swear he said ‘banana’ this morning, no doubt inspired by the book I have been away promoting about a woman who was brought up by  monkeys.  My little boy may not sleep or hear but I swear he’s a genius.

 

 

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.

One Year On – We really ARE copying with the deaf diagnosis. Yay!

25 Sep

It’s a year this week since our baby boy was diagnosed as severely deaf. At the time we couldn’t eat or sleep. We couldn’t even drink which shows how badly it affected us! Paralysed by shock and grief we stumbled our way through the first few months.

People say that when you experience a death in the family you shouldn’t make important decisions for at least a year. I wish someone had told me that the same applies to a serious diagnosis. My knee jerk reaction was to give up a days salary when I returned to work in February. Madness given that I still do the work. I just don’t get paid for it any more. We also ploughed blindly ahead with plans to send our older daughter to private school which were only halted at the eleventh hour when a business trip to New York gave me the perspective to realise that adding the emotional turmoil of school transition into a situation where emotions in the family were already running high was just asking for trouble. Plus I’d lost a days salary.

Around his first birthday life finally began to seem more normal again and to my joy our baby boy began to respond to us so we no longer had to have blind faith in the endless audiograms and experts who poke things in his ears to tell us what he could hear. On our flight back from Menorca I was singing ‘clap, clap handies’ and to my astonishment he started clapping. On holiday in Islay he didn’t even have his hearing aids in when we asked him to ‘wave bye bye’ and he did it. It was the first time we’d realised he could hear anything without his aids in. This morning my husband and I had tears in our eyes when we said ‘kisses for daddy’ – again without hearing aids in – and he blew an enormous raspberry – the closest he ever gets to kissing.

Every milestone, which with our other children we took for granted, seems like a miracle. This time last year we had absolutely no idea if the deaf diagnosis was related to something more sinister but as time has progressed and he has moved from sitting to commando crawling and proper crawling to cruising we have realised that there is absolutely nothing wrong with the rest of his development. He may not be able to hear as well as the rest of his friends but with his hearing aids he can and like most deluded parents of one year olds we have convinced ourselves that somewhere in that baby babble are the words ‘daddy’, ‘mama’, ‘thank you’ and ‘bye bye’. He terrorises us on a daily basis as he discovers new ways in which we should have baby-proofed our home then gives a huge toothy smile as he stands rocking on a kitchen chair, ascends the steep study stairs or suspends himself in mid air dangling from the book shelves.

I would love to go back in time and tell myself that although the deaf diagnosis is devastating it is surmountable. There will inevitably be lots of tears but nothing can compare to the joy we all feel as he reaches each milestone. Yes I’d prefer it if he could hear, yes the hearing aids are a fiddle to get on and a pain to deal with when we go swimming / to the beach but with them in he is exactly the same as every other little boy his age.

Except possibly more handsome, more intelligent, more happy, more fearless and A LOT more loud!

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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