Tag Archives: advantages of being deaf

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.

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It’s a new dawn. It’s a new day. It’s a new life.

21 Jan

Deaf baby swimmingAlthough outwardly positive, anxiety is often my default setting. I’m that duck who appears to glide over the lake of life while frantically paddling underneath. However I was truly inspired by a friend’s astonishingly positive Facebook post, at a time when she could have been wallowing in self pity, and am determined to stop worrying about things which might happen and enter 2014 feeling good.

Her father had just died, a feeling I know only too well, but instead of starting the new year thinking about what an annus horribilis she had had, she used her Facebook post to reflect on all the great things that had happened in 2013.

Careering towards the end of my career was crushing but out of it has come a whole new world of opportunities and such good wishes and support from some wonderful friends within the publishing industry that I wouldn’t turn the clock back if I could. Brownlee Donald Associates launched on 3 January and I’m loving every minute of it.

The children also continue to delight. For every stroppy teenage moment the 11 year old has (there are a lot. She spent much of Christmas in New York on Facetime to friends in Edinburgh) there is another moment when I burst with maternal pride, when she wins a swimming gala or just puts her iPad down for once and wants to hang out.

The 8 year old astonished me at Christmas by being selected to sing a solo as the Angel Gabriel in the nativity. I went along with trepidation, but her voice (largely in tune) soared up to the balcony where all the parents were sitting and I could have wept. She overcame fear and bullying from some children who teased her for doing it and made me so so proud.

The deaf 2 year old will never be bullied. I find it hard to believe that we perceived him as a victim when he was first diagnosed. He is so happy – and so strong – that no one would dare mess with him. That said my heart broke a little when I took him to his first swimming lesson last week and realised that it revolved around singing songs which he couldn’t hear without his hearing aids in.

I didn’t tell the other parents he was deaf and they no doubt pre judged him as he ignored the teacher and splashed round the pool. When the other 2 year olds sat nervously on the side of the pool during ‘Humpty Dumpty’ ready to ‘all fall down’ into their mother’s arms, mine just looked perplexed. Until he got the gist of what was going on. Then he scrambled out on his own using the bar for leverage like a small monkey and letting out a great roar took a running jump and leapt into the pool. The teacher looked horrified but he emerged, elated, water dripping from his long eyelashes and we both burst out laughing.

When we first got the deaf diagnosis we couldn’t see beyond immense sadness but in fact thanks to him there is always laughter in the house.  It is he who keeps a smile on our faces.

So as I enter a new dawn, a new life, a new day. Life is good.

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.

Our deaf toddler is 70% Deaf. 100% Boy!

15 Aug

2 yr old on golf courseI never thought I’d say this but I love hearing aids. I love them. The difference when he has them in is astonishing. He can hear a little bit without them but when he loses one, dips them in hoummous or goes to the swimming pool I suddenly realise what a massive difference they make.

I rarely take him swimming. Partly because he’s the third child and the thought of fighting to get his clothes off and on and then stand shivering in a pool doesn’t really appeal. Partly because his big sisters go to swim club training about three times a week so I spend my life beside swimming pools. Partly because hearing aids just complicate matters.

On holiday in Spain my naive hope that he would wear his aids to the pool and we’d just take them out when he wanted to go into the pool was dashed on the first day when he hurled himself towards the pool without warning…and without armbands. An hour later we had purchased armbands and removed his aids but then faced the additional problem of disciplining him when he couldn’t hear us. My cries of ‘careful!’ when he ran round the edge of the pool, ‘stop!’ when he tried to hurl himself into the deep end and ‘share!’ when he snatched some poor childs toy away from him were entirely lost in the silence. I think he rather liked it. Not being able to hear a nagging parent can’t be a great loss. I hated it. I hated it even more as the week progressed and I was conscious that I was continuing to say the same things (particularly the sharing bit) purely for the sake of the other parents.

I don’t really notice his hearing aids any more. When I met someone who took her child to the same toddler group I tried to describe my son and was describing him as blonde, loud and the size of a small giraffe long before I thought to describe him as the one with hearing aids. As soon as I did she knew who I meant immediately.

Because he couldn’t wear his aids at the pool we kept him in the apartment more than we would have otherwise. Our holiday rule is no TV but strangely the iPad seems a less offensive alternative so he sat happily on the balcony, magic ears in, watching Mr Tumble minus the usual background noise of our chaotic family as a result of which his vocabulary increased dramatically. His pronunciation of ‘app-le’ is the cutest thing I have ever heard.

Our next holiday of the summer was the day after he turned two at the end of July. We went on our annual pilgrimage to the Island of Islay where water didn’t pose nearly such a problem. Apart from the fact that he refused to dip a toe into the icy water for the duration of our stay he also has a pathological fear of sand so while his sisters were jumping on the dunes and playing in the rocks he was running around the cottage saying ‘moo’ to the cows in the field behind and doing a ‘digger!’ shout every time the tractor drove past.

It’s definitely a boy thing. I have attended the Islay Show for my entire life, the last 11 with children when the focus has been on bouncy castles and sweetie stalls. This year my primary focus was the sheep and cows (‘baa’ / ‘moo’) followed by the digger (‘digga’) stand where my 2 year old insisted on sitting on every piece of agricultural machinery on offer. I was rather pleased with the introduction, it transpired that the digger stand offers the most generous hospitality of anyone at the Show and while the rest of my family were paying through the nose for candyfloss I was eating strawberries dipped in white chocolate courtesy of W & M Currie & Son.

The following day we were at the Machrie Golf Course for the final round of a major competition. As the finalists stood on the first tee ready to take their first shot my two year old struggled from my arms and ran across the fairway. Scooping him into my arms I got him as far as the first green before he was off again, thankfully running backwards and spinning around the pin at the fourth rather than the first which would have substantially affected the competition. The gallery following the golf weren’t sure which was the more entertaining.

He had his hearing aids in the for the whole time in Islay (apart from the incident with the hoummous) and words started coming thick and fast. Our wonderful Teacher of the Deaf had introduced me to an iPad app called Sound Touch which shows animals and vehicles and their associated sounds. In Islay it was as if the app had come to life. Everywhere he looked there were sheep, horses, ducks, dogs, cows, cats and birds. We watched the plane land at the airport every day, tractors and quad bikes go past the cottage and on our final day he could barely contain his excitement as he watched the cars drive on to the ferry then a lifeboat appear alongside with a helicopter hovering above it and shouted ‘helicopter!’.

It’s funny how you can go to the same place on holiday year after year but have a different experience every time. I’m loving the new boy world he has introduced me to and had to stop myself shouting out ‘digger’ as I cycled past one on the way to work this morning.

Our two year old may be 70% deaf but he’s 100 % boy and with the aids in he is no different to his contemporaries. Except possibly more physical. More funny. More handsome. More cute … and more scared of sand.

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.

Disability is not a box to be ticked it’s a day to day reality

20 May

photo(12)When I wrote my CV (for the first time in about 20 years) I added the line that since having a baby who is deaf, disability is no longer a box to be ticked by various organisations but a day to day reality. A colleague pulled me up on it, probably quite rightly, commenting that any future employer will read that to mean that the deaf issue impacts on me every day. It does, but not in a bad way. I actually meant it as a positive.

Pre diagnosis I sat on various boards and committees all of whom had to provide various disabled facilities. I was always supportive but it never seemed real until I had to deal with a disability of my own and began to appreciate the little person signing in the corner of TV programmes, the sign language interpreter at the Festival, the hearing loop at the theatre, the council directive that schools have to accommodate children with disabilities and will therefore address any acoustics issues.

Far from dominating my life in a bad way the deaf diagnosis has enhanced it. When things are bad it puts things in perspective but recently when my mother was ill and the impact of redundancy on bills was preying on my mind I was even happier to realise how far the deaf issue has moved down my list of worries.  My little boy is getting on so well and is so happy in himself that he’s stopped being a priority and is just another member of the family. He’s started singing the ‘more to eat, more to drink song’ complete with signs, not to mention hurling himself on the floor and warbling ‘row, row, row the boat’ at every available opportunity.

In terms of day to development I can’t see any difference between him and his friends other than the two little hearing aids hooked round his ears.  That can cause anxiety at soft play. Whereas most parents are worrying about the loss of a sock we are worrying about the loss of something substantially more expensive but we have the advantage of his two big sisters to chase him round the slides and ball pools like guardian angels in skinny jeans and Hollister hoodies.

It was my younger daughter’s 8th birthday party last week. The 10 year old brought out a cake and when she blew out the candle urged her to make a wish then tried to guess what she’d wished for. The 10 year old’s first guess was that she’d wished for our little boy not to be deaf.  She hadn’t.  The 8 year old had wished that my father hadn’t died in the car crash and could come back to life.  I was astonished by their selflessness. I was expecting her to wish for a puppy or an iPad. Both as unlikely as my father coming back to life or our little boy not being deaf.  I’d still rather he weren’t deaf too but as long as he’s happy I’m happy and I have never seen a happier child. Disability may be a day to day reality but it’s a reality we’re all coping with pretty well.

From Publisher to TV Presenter

15 Mar

mr tumbleIt’s not until you experience something for yourself that you can truly empathise with other people. It was only when I experienced bereavement that I appreciated the shock and sadness that death brings. It was only when my son was diagnosed as deaf that I appreciated how many other things there are to consider when you have a child with a disability. And it is only now, experiencing redundancy for the first time that I appreciate the conflicting emotions of anxiety and excitement which constantly vie for precedence.

After my father died I realised how precious the adjectives are in letters of condolence. After my son was diagnosed as deaf I appreciated that hearing loops are not just token gestures to the PC brigade. Now facing redundancy I realise that it’s far better to confront the issue and offer positive words of encouragement rather than avoid mentioning it and offer only a sympathetic glance.

I feel guilty. I’m sure I have done the same in the past but the most frustrating thing in the last week has been people’s inability to make eye contact. In the same way that I found myself reassuring people after my father’s death or my son’s diagnosis, I have found myself bounding up to people reassuring them that I will be fine post redundancy.  I will. But a hug, a cheerful smile and endless flattery are doing me a lot more good than tragic glances across a crowded room.

Meanwhile the family remind me what is important. The 7 year old continued our run of good luck by coming first in breaststroke at swim club, the 10 year old has been selected to represent the school in the inter schools gala and the 19 month old took my mind off the office closure completely by having a sick bug for 6 days.

Having returned from a hectic week of conferences, film previews and networking in London it was actually quite relaxing to be forced to cancel everything and just sit holding my listless baby in my arms with Something Special on a loop for the whole weekend.

Thanks to watching Mr Tumble 24/7 his vocabulary has expanded from ‘oh oh’, ‘there’ and ‘pooh’ to include ‘helicopter’, ‘scooter’ and ‘lighthouse’.  Possibly a slight exaggeration but I’m word perfect – and can do the signs. An alternative career presenting childrens TV beckons.

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