Tag Archives: newly diagnosed deaf children

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!

Advertisements

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.

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.

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.

‘Don’t leave us!’ – Continuity of Care

20 Sep

2 yr old hearing aidsWhen the 2 year old was first diagnosed as being deaf we were assigned a Teacher of the Deaf and a Speech Therapist. The Speech Therapist left fairly quickly to be replaced by a lovely girl just back from maternity leave. The Teacher of the Deaf was with us from day 1.

She was the person I cried in front of. She was the one who tolerated my mood swings as I debated whether or not I wanted to meet the parents of other deaf children or not. She was the one whose visits I genuinely looked forward to as she taught me games to stimulate my deaf baby and created fabulous books to help him learns his first words.

When we went to the horrendous ‘weekend for the parents of newly diagnosed deaf children’ in a grim seaside town when he was a matter of months old one of the few highlights for me was the relationship the deaf teenagers had with their Teachers of the Deaf. They seemed like members of the family and I hoped that ours would be with us forever.

In fact she was with us until this month when a promotion, I think bound up with cuts, means that we are being handed over to someone else. The new Teacher seems lovely but I don’t want people to abandon my little boy. When she first mentioned she was leaving in June I was in tears and to my shame think I reacted with the maturity that my 11 year old does when things don’t go her way.

As I flailed around for some continuity of care for my deaf little boy I clung to the Speech Therapist who he had become increasingly fond of. When she left in July he shouted out ‘Bye, bye Lisa’ and I was immensely happy. Not only that he could speak but that we had a medical professional who could fill the gap left by the Teacher of the Deaf.

We didn’t. When she returned after the summer holidays it was to tell me that she was pregnant again and would be leaving us at the end of the year. I was devastated. How can everyone leave us at once?

When the older girls were younger I was devastated every time one of our favourite nursery nurses left. When you lose someone who is vital not only to your childs happiness but to their development it feels even worse. However I am trying to rationalise it by convincing myself that professional skills can be replaced. Genuine love cannot. We are still in touch with my older girls two favourite nursery nurses and I know they love my children. The one person who is most important in our little boys life is our childminder. She genuinely loves him and is as delighted when he learns a new word as if he were her own. He in turn does a ‘Roo, Roo’ shout every time we get in the car and runs to her door without a care in the world. She’s like a young, glamorous ‘Granny Murray’. When she gave up Saturday mornings with her own family last year to come to sign language classes with me I was so moved that I filled in the Surprise, Surprise application form in the hope that I could show her how much she means to us.

Unfortunately I didn’t actually get round to sending it so this will have to do.

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.

%d bloggers like this: