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

I 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.

The baby spoke

Our deaf 18 month old was sitting in his high chair watching his big sister be the seeker in Hide & Seek when he suddenly shouted out, ‘There!’. He was pointing at a large beanbag beneath which a 10 year old boy was hiding. I was so proud of him. It was so spontaneous. So appropriate. So funny.

The speech therapist had been to visit him for the second time earlier in the week and I was conscious that she felt he hadn’t improved since her first visit pre Christmas. His hearing levels have gone down due to the glue ear but I have recently noticed a marked improvement in his responses, partly due to his cold getting slightly better, partly due to the volume settings on his hearing aids being ramped up to the max.

I desperately wanted him to impress her and was disappointed she felt his speech hadn’t improved but I suspect it is because my husband, with whom she had the last meeting, is a ‘cup half full’ kind of guy and as far as the deaf issue is concerned I am ‘cup half empty’. I completely understand my husbands enthusiasm but whereas with the other children I was forever claiming that I could make sense of their baby babble I am wary that if we exaggerate his achievements our deaf little boy might not get all the help he needs.

However there was no exaggeration required on Sunday night. As he enthusiastically screamed ‘there!’ and completely ruined his sisters attempts to play Hide and Seek I beamed with pride. We had friends round to celebrate my mothers birthday and the spontaneous cheering his performance elicited made him show off even more.  Perhaps all my deaf baby needs is an audience and he’ll be speaking fluently by the time he’s two.

Controlled crying. For or against?

When I started this blog, long before my father’s car crash or our baby’s deaf diagnosis, the biggest drama in my life was sleep deprivation. Even post crash and deaf diagnosis, sleep deprivation still has the ability to transform me into a tearful shadow of my usual self.

Our 10 year old only started sleeping through the night when she began sharing a room with her sister. In an attempt to crack her sleep problems I bought every book on the subject, hired a ‘sleep doctor’ and had a researcher from a sleep clinic use her as a test case for a study so I know what I should be doing. I’m just not very good at doing it.

I dabbled with controlled crying but our first born cried so much she made herself sick and we would eventually relent. The experts advice to whisper words of reassurance was pointless as she couldn’t hear us through her own screaming. Our 18 month old can’t hear regardless so there is no point in whispering at all.

As we couldn’t follow the advice in the books we fell into all sorts of bad habits. Originally he would settle if we gave him milk so we gave him milk – at 11pm, then at 2am… then at 5am…. Latterly he wouldn’t go back into his cot and would literally wrap his limbs around us like a determined little orangutan until we relented and took him to our bed. I could have lived with that had he slept but even there he was taking longer and longer to settle with the result that since Christmas we have had to take it in turns to sleep with him so that we at least get some sleep every other night.

Detox January was manageable as we weren’t going anywhere but February marked the resumption of our social life and I realised that a dinner party wasn’t going to be a huge success if I had to go to bed when the 18 month old awoke at 11pm. Thankfully I had to go to London on business so charged my husband with the responsibility of forcing him back into the cot after his 11pm bottle and after that minor triumph decided to make him go cold turkey and venture into controlled crying territory.

It’s impossible to sleep when your baby is crying his heart out next door. My resolve very nearly weakened on numerous occasions but here we are 5 days on, the crying is less persistent, our bed is our own and the 18 month old is waking up at 7.30am with a big smile on his face.

He’s still hopeless at having a day time nap at his childminder but she claims that is because he wakes up at the slightest noise.  Our deaf baby hearing anything trumps sleep any time.

From severely deaf to profound in two tests

Two 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.

Losing our baby. Nine years on…

The wreath we placed on the coffin. Dec 2003

It’s 9 years this week since we lost our baby girl.  The emotions are still as raw as if it were 9 months ago.  I always hate this time of year but this anniversary is even more poignant because our little boy is 16 months.  Exactly the same age as our older daughter was when I was rushed into hospital after my waters broke at 20 weeks in November 2003.

In the past when I have have relived the pain of that time my focus has been on my medical treatment, the baby girl I never had and the agony (mental and physical) of my milk coming in, even though I had no baby to feed.  It’s only now, faced with a very visible reminder of a child exactly the same age, that I remember the additional anxiety of abandoning my 16 month old while I was monitored in hospital.

Our saving grace at that time was an excruciating video of Sing-Along-Songs which I bought as a first time mother, ashamed that I didn’t know the words, let alone the actions, to Wind the Bobbin Up and Miss Polly Had a Dolly.  Poor production values and dreadful clothes aside that nursery rhyme video (interestingly produced by Grant Bovey) so entranced our first born that my elderly parents were able to pop her in front of it for hours at a time while my husband visited me in hospital.  Such was her obsession I assumed that 9 years on she would remember it with affection but as I blew off the dust and popped it into the ancient video recorder with tears in my eyes she just looked appalled and resumed surfing YouTube on the iPad.

When I look at the stroppy tweenager she’s become it’s hard to imagine her as a vulnerable 16 month old but seeing our litte boy has reminded me that this time 9 years ago my anxiety was as much for the baby I already had as the baby who was struggling to survive in my tummy.  I don’t think I really thought of that baby as real (in spite of daily, sometimes hourly, scans) until I gave birth to her (dead) at 8pm on Friday 5 December. She was so perfectly formed and so tiny I could fit her in one hand. We held her all night and I sobbed when I had to hand over her cold body the following morning.

Arriving home having held our tiny baby my 16 month old no longer looked small or vulnerable.  She looked like a strong, healthy toddler.  She probably saw more tears than she should have over the months that followed.  I clung to her both physically and emotionally and even now, stroppy tweenage tendencies aside, she is one of the few people who recognises the triggers that might upset me and remembers the date.  I can’t imagine leaning on our little boy so much.  Not just because he’s deaf but because in spite of his vast size (99th centile to her 25th centile) he still seems very much like a baby. Even the 7 year old, who is undoubtedly more advanced educationally than her sister was at the same age, doesn’t have the same emotional maturity.

Nothing will take away the memories of our second child but this weekend as our (third) child jubilantly spat out her front tooth covered in blood and our little boy took his first faltering steps joy and laughter filled the house at a time when I used to think there would only be sadness.

Our baby girl is gone. Certainly never forgotten, but I feel truly blessed to have three other gorgeous children, regardless of their various faults and problems.

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

 

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.

 

After the Crash and before the Jubilee

Never have I been more sleepless in silence in suburbia. Sleepless because my 9 month old baby has taken to waking at half ten and again at half twelve after which he steadfastly refuses to settle. Silence because in addition to his raft of tricks relating to whipping out his hearing aids and separating them into four pieces in a matter of seconds he has now added piercing the moulds with his razor sharp teeth rendering them virtually useless. Suburbia because although we’re always in suburban Edinburgh this week we ventured to suburban London for a much needed catch up with old friends. The girls think they went to London but in reality all of our friends have moved so far west that it’s practically the home counties. However a photo of the Harry Potter trolley at Kings Cross, a quick whizz over Waterloo bridge pointing out landmarks and we’ve convinced them they’ve been in the metropolis.

I was astounded by the prevalence of union jacks in London.  Everywhere I looked there was bunting whereas in Edinburgh, though not a city rampantly in favour of independence, it is only the occasional shop window that has an apologetic display dedicated to all things British. At St Pancras the girls were excited to see the Olympic rings suspended from the ceiling and even Marks and Spencer at Kings Cross had the All English range of sandwiches including Coronation Chicken and Roast Beef and Yorkshire Pud which I hadn’t spotted in their Scottish counterpart. In anticipation of the Jubilee, and presumably the Olympics, we had a note home from Brownies asking us to teach our children the National Anthem. As it was one of the first things I ever learned to blast out on a recorder at school (spit firing out the end) I was surprised that our children had got to the ripe old ages of 10 and 7 without learning it but as the anthem is generally only sung at sporting events which they watch with saltires painted on their faces I suppose it makes sense that they’re word perfect at the Flower of Scotland and clueless about the English equivalent.

We returned from London on Monday, a Bank Holiday here though nowhere else (interestingly the children only get one day off school for the Jubilee) and the children were still off school on the Tuesday. Perfect timing as it was my birthday. Twenty years ago I recall celebrating my birthday with a wild party in the garden of my London flat with free flowing Pimms and very little food. Ten years on I was pregnant with my first baby but still attempted to go out for a meal with a crowd of friends and pretend I hadn’t lost my party spirit. This year, increasingly unimpressed by my advancing years, I was quite happy to celebrate alone in the garden with the children.  I spent the day listening to one of our authors, Martin Spinelli, being interviewed on radio and TV. The subject of his book, After the Crash, resonates deeply with me. Like my father his wife was killed in a car crash but his young son was in the car with her and Martin barely had time to grieve as all his energy was directed at willing his little boy to recover.  Thankfully he did and Martin said in his many interviews that whereas before the accident, when he apparently he had everything, he was still dissatisfied with life, post accident he has realised that being a good father is more important than anything else.

It was ironic that as I listened to the various interviews and nodded sagely in agreement I was ignoring my own children. Though not as ironic as the phone in on one of the daytime programmes he was on which was on the subject of parents use of phones and computers being tantamount to child neglect.  I felt even more guilty then laughed as I heard the presenters urge parents to send in their thoughts by email, text or twitter or call them – no doubt with neglected children sitting in a high chair or crawling around their feet.

In fact I had a lovely birthday with my children.  The older one lay on her tummy in the garden reading magazines, the younger one cleaned out a water play tray for the baby to play with and he commando rolled around the garden, possibly in silence, certainly in suburbia, but clearly very happy.

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

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?!

…and the new blog emerged from its shell and waddled down to the sea.

Lots of people have asked why I stopped writing the blog.  In part it was my crazy plate-spinning lifestyle. In part it was because without someone prodding me to deliver copy each week I kept procrastinating. But the main reason was because the editors, having asked me to concentrate on the ‘deaf issue’ felt my blog was no longer sassy and funny. They were quite right, but it’s difficult to laugh in the face of adversity.

I have included ‘silence’ in the blog title to reflect the fact that our baby boy is deaf. There is no getting away from ‘the deaf issue’ but now that I have the freedom to write about what I want, when I want I can again include the ridiculous antics of our six year old daughter (who worrying embraces all things chav) and the tentative steps our nine year old daughter is taking towards adolescence (asked to her first school disco last week) which make me laugh and cry in equal measure.

Since January we have had our baby baptised on the Island of Islay, I have returned to work, I have abandoned my family to go on business trips to London, we have spent a weekend with the parents of other newly diagnosed deaf children in Ayr and I have taken the girls to see X Factor Live in Glasgow. Of those the most relaxing, ironically, has been returning to work and the most frightening, not the deaf weekend but taking the underground train from Glasgow Central to the SECC surrounded by ravaging hordes of X Factor fans.

The ‘deaf issue’ impacts on our lives but it doesn’t define it.

You’ve got to have faith

I wasn’t particularly religious until our baby girl died at 23 weeks in December 2003.  That night in hospital, holding the tiny but perfectly formed baby in our arms, I gratefully accepted the offer of a visit from the hospital chaplain who said a prayer over her little body and recited the blessing which is traditionally sung at Church of Scotland baptisms.  We would never have chosen to have an actual funeral but were told that there would be a cremation as a matter of course and it was our choice to be there or not.  So it was that one cold winter day we arrived at the crematorium and were handed a small white coffin to carry down the aisle.  The hospital chaplain conducted a short service and the only people present were my husband, my older daughter, then aged 16 months and me.

We were overwhelmed by cards from friends and relatives, the most moving of which was from a business colleague in Holland who said she had lit a candle for our daughter in a beautiful church in Amsterdam.  Thereafter, whenever I went on a business trip I made a point of seeking out a church to light a candle for our little girl. It was in a cathedral in Frankfurt that I had the realisation that I could probably get the same solace were I to go to church at home and from then on I started going to church on a regular basis.

Both my girls were baptised in Islay, a beautiful island on the West Coast of Scotland where my own name is on the cradle roll.  We will do the same with our baby boy but I wanted to do something at home to celebrate his birth in our own church, as to be honest, he could do with all the prayers he can get.  It seemed appropriate to arrange the Blessing for the anniversary of when we lost the baby which by coincidence is the same date I found out I was pregnant last Christmas.

I thought we could cancel out the negative emotions with positive ones but going into church and seeing her name in the Book of Rememberance, I was choked and bitterly regretted putting mascara on my bottom lashes.  It wasn’t helped by the fact that in attempting to downplay the occasion, my husband’s family were up en masse but none of my family were there at all, apart from a second cousin who I clung to, grateful that I had at least one blood relation in the congregation. Thankfully I was able to pull myself together and smiled proudly as our nine and six year old girls were invited to light the advent candles, and even managed to sing the Blessing when we stood at the front, as the minister carried our baby around the church.  The only moment I faltered was when he held our deaf baby boy and said, ‘May you Hear the voice of God ringing clear for you every day’. Tears welled in my eyes and those of most of the congregation.

I know it is fashionable to condemn religion.  I know it causes as many problems as it solves.

But I really need to have faith that my baby girl is in heaven and that my prayers that my baby boy will grow up to be able to hear and speak will be answered.