Gulliver’s World Fireworks Spectacular

Usually around this time of year, we arrange a visit to Gulliver’s World in Warrington for their Fireworks Spectacular. Unfortunately, Gulliver’s World has decided that they will no longer give discounted prices at their special events for groups. They have also raised their price to £8.50 for this event.

It was felt that this price would be too expensive for families (even with our subsidy it would still cost you £5.50 for each ticket) so it has been decided that we would not ask for tickets this year. I have written to them telling them how disappointed our members will be.

We had also had a lot of feedback that the day itself was too long and the smaller children were asleep by the time the fireworks began or that it frightened them. If you feel that even at this price, you would like us to consider restarting the event next year, please write to us and let us know.

I am also pleased to announce that our first AGM will take place at St Anthony of Padua Church Hall (same place as our Christmas party) on 12th June 2004. It is hoped that this will also be a social event with some entertainment for the children and a small buffet.

Colin Hill
Chairperson DSL

You will be aware from previous issues of this newsletter of the problems (non-existence) of speech therapy provision in secondary schools in Liverpool. I am delighted to tell you that, after raising this matter with the LEA, alerting, and being represented on the SEN Forum who also took up this problem, the matter has now been resolved and a qualified speech therapist has been appointed to work with our children. In due course, an assistant speech therapist will also be appointed and together they will continue speech therapy within secondary schools.

We would like to thank all those on the SEN Forum (including our own representatives) who continued to discuss this serious situation with the LEA, and the LEA for the prompt way in which they finally resolved it.

Now a cautionary tale.
This situation would not have been resolved had the LEA not had a legal duty to provide speech therapy due to the number of parents who had insisted on it’s correct placement within the statement (Part 3 - Education Provision). This will not be done retrospectively unless you insist on having your child’s statement amended. The amount of provision must also be quantified (how much, when and by whom).

Please check your child’s statement carefully and feel free to contact us if you need further information or guidance or if you are unsure as to its placement.

Colin Hill
Chairperson DSL

Victory is ours! I am a parent whose daughter was statemented for secondary school in July 2001, ready for September 2001. I had support from my Parent Liaison Officer, also my Regional Development Officer, so the wording was in the right places and the statement was for my daughters needs to be met.

My daughter had always received speech and language therapy throughout her primary education. However, entering into secondary school this was non-existent. I have had to write and phone on numerous occasions to both the Health and Education, actually speaking to people who said it would be in place very soon, but job applications had to be filled, then nobody applied for the position. The most upsetting part of my ordeal was the ‘It was not my problem’ attitude.

I was banging my head on a brick wall; my daughter was attending school,  still not receiving this vital service for her educational needs, plus the LEA were breaking the law by not giving my daughter the legal requirement from her statement. Therefore, the fight went on and in the end, after the letters, telephone calls, speaking to people who said it would be in place when the job was filled - hopefully by September 2002 - and once again encountering the ‘It is not my problem‘ attitude, I decided to go to ombudsman were I felt somebody could help me.

Yes, they did help and after a letter to introduce themselves, a telephone
conversation and my permission, the wheel was turning within a couple of
months. Yes, we now have a Speech and Language Therapist and an assistant.

It has taken me two years to get this it is now September 03.I cannot turn the clock back and my daughter has lost a valuable amount of time which was
necessary to meet her needs.

The following is a quote from the letter sent by the LEA to Ann:-

“The LEA and health authority have successfully appointed a Speech and
Language Therapist together with an Assistant Speech and Language Therapist to offer a service within the Secondary sector.

Accordingly, from September 2003, your daughter will receive Speech Therapy twice termly to take account of the input she has missed.”

The LEA apologised unreservedly for the delay in implementing the provision specified in the statement, with the ombudsman’s recommendation to recompense me by sending me £200 for the anxiety caused. I thank the ombudsman for all their help.

My daughter has her first appointment this month but she is only one of many who have not received speech and language therapy provision since starting secondary school. Let us get this very vital service in motion and let us hope we get the service our children deserve.

Ann Cavanagh
DSL Parent Member
(Mum to Sarah aged 14 years)

Congratulations to all our children who have either started school for the first time or moved on to the next stage of their education. Here we meet two children, Sophie Hughes and Chris Hill, who moved on to secondary school this year.
SOPHIE

In September, Sophie started her secondary education at Halewood Community Comprehensive School. In the build up to this momentous event everyone, apart from one person (Sophie) was getting increasingly nervous!

During her last two years at primary school, we had identified that the school we wanted her to go to was the local mainstream secondary school, Halewood. At her last school review, a member of staff from Halewood School attended and was extremely positive in that no problems were anticipated in her attending there. Indeed, at every review at her primary school, Hunts Cross JMI, her good progress was the main feature of the reviews and it seemed the natural choice to continue her education in a mainstream setting. In addition, Sophie’s classroom assistant, Ann Stevenson, had decided to transfer to Halewood School with Sophie, which was a great relief to us all, and she seems to have settled in her very different environment as well as Sophie.

Her first day at school was a big day for everyone, and the calmest person in the entire family was Sophie. She looked really good in her new uniform and when she arrived, she was one of approximately 250 Year 7 pupils starting on that day. She seemed to disappear into a large crowd of children and we were so worried about her getting lost, becoming anxious and generally overwhelmed by her new environment. However, she really enjoyed her first day and we all felt a bit more relaxed.

On her second day at school, she turned up with all the rest of the school, which is well over 1,000 pupils. It was unbelievable! As usual, Sophie took it all in her stride and trotted off into school.

Even though (at the time of writing) she has only been in school for just over a week, it is evident that she really enjoys it. She has quite a bit more responsibility than in primary school, and chooses and pays for her own dinner each day. She has also taken herself off to the school library. She really enjoys going to the different classes and seems to be interested in learning new subjects, especially getting stuck into the drama classes.

Perhaps the most important aspect of her inclusive education is the fact that she is well known in the local community and has been made to feel a part of the school from the very first day. It has been an excellent start.

Judy and Peter Hughes
DSL Parent Members

I have been Sophie’s Educational Support Assistant (ESA) for 8 years. We have been through thick and thin and many are the times I’ve wondered just who supports who. When we started primary school together, Sophie was 4 years old and I had transferred from another school after working with a boy for 5 years who also had Down syndrome. We hit it off straight away and we are best mates.

When you are 4, senior school seems an awfully long way away but gradually the years crept up on us and it was time to start looking at secondary schools that would be suitable for Sophie’s needs. The obvious choice was the local secondary and they had no hesitation in accepting Sophie. I was the only fly in the ointment ….. did I want to transfer with her, or let somebody else be privileged to be part of her life? Her mum and dad left the ball in my court and for the last few months of Year 5 and early into Year 6, I thought long and hard.

The Special educational Needs Co-ordinator (SENCo) at Halewood Comprehensive assured me that I would be more than welcome and would fit in well. As Sophie’s last review as a primary child approached, I decided to give it a go. All through the summer holidays, I had doubts and misgivings and as the day for starting came closer, my nerves were in pieces.

The big day finally arrived and now, a few weeks into the term, it is the best thing I have ever done. The staff are marvellous with Sophie and me. The teachers all want to do what is best for her and include her in everything. She loves it and she has become so grown up.

As for me, I’m so glad I’ve done it. Every day is different and we are doing such interesting things. Everyone has made us so welcome and can’t do enough for us.

When I see Sophie sitting in the canteen with her friends, I feel so proud. She is growing into a lovely young lady and I’m so happy to be part of her life. Her parents and grandparents have been such great support to me and have helped me enormously to settle down in my new school.

I would tell any ESA in a position similar to mine to go for it and I hope that your experience is as good as mine.

Ann Stevenson
Sophie’s ESA

Chris starting at Calderstones Community Comprehensive School has been a worry since Year 5 at Dovedale, his junior school, making sure his needs could be met and that everything would be in place for him. Wondering whether he would be able to find his way round such a big school, paying for his dinners, so many teachers, it was nerve racking.

The day came when he started; he looked so grown up in his black uniform with gold and black tie. Colin and I took him to school in the taxi and we saw him into the hall where all his year was meeting. His ESA was waiting for him and off he went without a second glance. We went home and worried, sitting rigid in the chair or just walking round the house doing odd jobs that didn’t take us far from the telephone.

AT LAST - it was time to pick him up. I was very anxious waiting by the gate but along he came all smiles. He was fine, and so it has gone on. Here’s hoping he will continue to enjoy his time at Calderstones.
 
 

Mal Hill
DSL Secretary and Chris’s mum.

My name is Anita Riley. I am a research nurse, working in the pharmacology department of Liverpool University.

Each year I am involved in the Liverpool Women’s 10K Run, and raise money for a different charity each time. On Sunday 18th May 2003, I took part in the run but this time was a little more special. I have a friend, a very close friend. Her name is Janice Botham. We have been friends for 30 years, since we started primary school together.

Adam

Jan fell pregnant last year. All our friends and myself were so happy for her. Janice gave birth to a beautiful baby boy on 11th February 2002. His name is Adam. Adam is a gorgeous, pleasant, bouncing baby boy.

Adam was born with Down syndrome so I decided that it would be a pleasure to raise money for Down Syndrome Liverpool. I raised £266.17 and would really like to thank all the people who supported Down Syndrome Liverpool by giving generously. I did the run in 54 minutes, the shortest time in five years. I was very pleased. I’m quite sure I will do it again next year, only this time I will be aiming to raise more money for Down Syndrome Liverpool.

Anita Riley
DSL Associate Member

Well done Anita and thank you from DSL for all your efforts.

The Down’s heart group have new contact details. You can now call them on a local rate telephone number:-
0845 166 8061
Which means you only pay for a local call no matter where you are phoning from in the UK.

You can also email them at info@dhg.org.uk
or visit their web site on www.dhg.org.uk

The DHG produce Christmas cards each year as a means of raising funds. You will find an order form at the back of this newsletter should you wish to order cards from them.

When DSL applied for charity status, it was a requirement of the Charity Commissioners that we have a formal Child Protection Policy. The following Child protection Policy was accepted by the Charity Commissioners and is produced here for you information.

‘The Child Protection Policy of Down Syndrome Liverpool is that we do NOT, as a charity, have any instances where we look after children (under 18) under any circumstances whatsoever.

Any events held by us are done so on the strict understanding that, at any such event, all persons under the age of 18 MUST be accompanied by their parent, guardian or other person aged over 18 nominated by the parent or guardian to be responsible for them.

Such a person may be a trustee of DSL, but any such responsibility rests with them as an individual and not as a trustee of DSL.

All persons attending such events are responsible for those aged under 18 in their charge and must remain in supervision at all times.’

The DSA will be moving from their offices in Tooting to new premises in Teddington some time towards the end of this year. We will keep you informed about new contact details when we receive them.

PSS, in partnership with Liverpool Children’s Fund, has set up a project that looks specifically at the needs of brothers and sisters (siblings) of children who have disabilities or life threatening conditions living in Liverpool.

The project has developed as a direct result of both parents and professionals becoming increasingly aware of the needs of siblings.

The Siblings Project aims to offer support to siblings through a child centred approach that recognises the needs, interests and rights of siblings.

Support offered to siblings includes advice and information, group work, individual support, holiday activities, opportunities to meet other children and young people who share similar experiences and to enable siblings to have some fun by taking part in age appropriate activities.

Referrals to the project can be made by a Social Worker, Teacher, Support Worker or other professional individual with the family or by self-referral.

If you require further information or would like to make a referral to the project please contact:-

PSS
Liverpool Siblings Project
56-58 Parliament Business Park
Block E
Commerce Way
Liverpool L8 7BA
Tel: 0151 708 5600

Merseycare launched a new website in July of this year, which aims to inform and involve staff, service users, carers and partner organisations. The Merseycare website provides a wide range of information about Mental health and Learning Disability services. For more information, you can log on to the site at:
http://www.merseycare.nhs.uk

Carers Unite are organising a petition throughout the UK, at present there are over 6,000 signatures in support of their campaign. The aim is to get a fair and decent deal for carers.

The request of Carers Unite is simple, they would like to see an increase in the Carers Allowance and the cut off point abolished. It is estimated that 6 million carers save the government £57 million per year. Carers Unite have the support of Liverpool City Council and other organisations that are joining them in the fight for justice for carers.

If you wish to support the campaign, please contact:-

Audrey O’Keefe
Tel: 0151 933 3662
Email Keefe12@blueyonder.co.uk or
Carersunitecampaign@hotmail.com

The following article appeared in ‘The Age’, a Melbourne newspaper, on September 28th, 2003. It seems to sum up what all of us have felt at some time or other.

Fourteen weeks ago, Kathy Evans gave birth to her third child, a beautiful daughter. Nine hours later, she was given the news everyone dreads - her baby has Down syndrome.

Let me start by saying that Conor and I are good parents. Everyone says so. When our third daughter was born with Down syndrome, the same sentiment echoed through the congratulation cards; it couldn’t have happened to a nicer family.

We appreciated the comments and the spirit in which they were made. They were attempts to be consoling by people who were lost for words, not knowing whether to offer congratulations, or commiserations. Still, sifting through the cards in the aftermath of our crisis, Conor remarked dryly: "Next time I’m coming back as a Complete Bastard."

Not that either of us believes in an afterlife. That’s our problem, Conor and I, we’re devout atheists. At this moment of reckoning in our life, when people turn to their faith for support, we couldn’t even draw comfort that Caoimhe was the baby that God had sent us or that this was our Fate; there was no spiritual buffer. No, we had been starkly confronted by a random act of the universe, Caoimhe McCooey was the one in seven hundredth baby born with Down syndrome, and suddenly our lives had changed forever.

It was, we reflected later, as if we had gone on a road trip, lost the map and ended up in a town inhabited by aliens. Overnight we had entered the strange new world of disability where up until now, my only acquaintance with such a place had been occasionally sneaking into a wheel chair allocated parking spot.

We had spent months agonising over whether to have a third child. We already had two headstrong, capricious yet delightful daughters, and wondered what a third child could bring. But the primal urge to reproduce eventually drowned out the small, but insistent voice of reason at the back of my mind, which banged on about lack of money and time, and last October I became pregnant. Right from the start there was something wrong. First, a low, nagging pain, and then a blood test that revealed the levels of human Chorionic Gonadotrophin, the hormone needed to sustain this pinprick of life, were rising at a snail’s pace. An ultrasound at six weeks showed our baby, a tiny star in a vast black universe winking down at us from the monitor. Next to her, a puddle of grey spilled across the screen like the Milky Way. I was bleeding internally and was, as the medical jargon puts it, about to "spontaneously abort".

I was devastated. Even at this early stage, she was still my baby. I went home, wrote her a letter and waited for the inevitable. It never happened. Instead, a vague sickness crept over me, which grew stronger and stronger as the days passed. An eight-week scan showed a healthy embryo with a strong heartbeat and a 90 per cent plus chance of survival.

We decided not to have the 11-week tests for Down syndrome. At that point, we were just thankful she’d survived. Termination, with its jumbled spaghetti of ethics and emotions, was not something we could contemplate. And of course, we believed it would never happen to us. For a start, I was only 35, at the crest of fertility’s slippery slope. I ate well, didn’t drink, didn’t smoke, and was physically healthy. How naive I was! Now I know that 80 per cent of babies with Downs are born to women under 35, who, perhaps like me, believe the odds are strongly in their favour.

We did have the 18-week scan. The doctor who performed it raved about the new technology which showed our baby pirouetting in the womb in glorious colour 3D. Conor thought she looked perfect, but when a close-up of her face loomed large on the screen, I couldn’t help but exclaim, "Blimey she looks like Spud from Bob the Builder."

The name stuck. From then on, my bump was known as Spud. We bought clothes for Spud, made plans for Spud. In my fantasies, I saw her with red hair cascading down her back, long, delicate fingers running up and down the piano with an effortless grace that I had never acquired in all my years of practice. My daughters painted endless pictures of Spud. Spud on a horse. Spud going shopping. Spud in her pram. And as the due date got nearer and nearer, they’d ask, "Will Spud come out today?"

Spud needed a proper name. Her Irish father was determined it would be Gaelic and we decided to call her Caoimhe (pronounced Keeva) which means grace.

On Tuesday, June 17, at five-o clock in the afternoon, in the middle of a clothes shop in North Brighton, I went into labour, six days overdue. Not the gradual escalation of pain, but sharp peaks erratically spaced. I went home and played the piano, crashing out disharmonious chords, which crescendoed with each contraction. At 10pm, we headed for the hospital. In that drunken euphoric state of active labour, I remember chanting: "Tuesday’s child is full of grace,".

At 11.45pm, my friend Annabel who was acting as birth attendant said: "If you want this child to be born on a Tuesday, you’d better hurry up." Caoimhe emerged eight minutes later.

She was beautiful. At seven pounds three ounces, she was smaller than my second child, bigger than my first. There was nothing to suggest anything was wrong. She wriggled and grimaced with all the vigour of a typical newborn who had been rudely evicted. And when she opened her huge eyes, I could see they were slate blue, with the promise of hazel, like her sisters.

I held her to my breast but for some reason, she couldn’t suck. The next morning I was still struggling to get her to feed. A midwife, whose face remains seared on my brain, casually asked me if I’d had any screening tests in pregnancy. Puzzled, I asked her why she wanted to know, and she told me it was believed my baby had Down syndrome.

Heavy words, so lightly spoken. It couldn’t possibly be true. I snatched up Caoimhe and looked at her. How could I have not seen it? Her beautiful eyes were indeed slanted, her tiny ears folded down at the tops. From that point on, it was as if Spud had evaporated and a changeling placed in the crib. Whenever I looked at this strange new baby, I could no longer see her beauty, just her defects.

No one at the hospital really seemed to know what to do from that point. It was left up to me to break the news to Conor. He’d taken our two daughters out to celebrate with chocolate cake and babycinos, and came home to find my broken message on the answering machine.

Naturally, he was devastated. In some ways, it was harder for him. While I could allow myself the luxury of tears cocooned from the humdrum of everyday reality, he struggled to be stoic for the sake of our two daughters.

The rest of the week passed in a blur. The public hospital was a busy, bustling place but I felt suspended in time. Staff came and went, watering the roses, collecting food trays, slipping in and out like shadows. My feelings of grief and sadness, and overwhelming sense of isolation felt so out of place on a maternity ward where happiness hangs like thick smog. On the second night, the mother in the next bed held a party to celebrate the birth of her first child. As the champagne corks popped, and the cameras flashed, I stifled sobs into my pillow for the baby I hadn’t had.

Conor and I were left alone to deal with the fallout of our dreams. On reflection, I find it ironic that couples agonising over whether to terminate a foetus with Down syndrome are offered counselling by trained professionals, whereas we hardly got as much as a cup of tea. There was a general awkwardness among the staff when it came to talking about her diagnosis; or else it was ignored completely.

Maybe I came across as a person who was coping, whereas inwardly, I was flooded with the strangest sensations. Grief, anger, disappointment, fear and an overwhelming love for this tiny creature who was still my child, and who was struggling with the very basic survival skill of sucking. Every minute was spent trying to get her to feed, but her low muscle tone made it achingly difficult. I felt so helpless after each attempt left us both angry and confused. Sitting with her on my lap, stroking the muscles of her cheeks and throat in an attempt to stimulate a reflex, there were fleeting moments when I hated her for being different. I felt impatient with her for not being able to do something so basic, and terrified that this was a pattern that was going to be recreated all her life. How old would she be before she was toilet trained? Would she be able to read and write? Hold a conversation? I wanted to know everything about Down syndrome, but I was too terrified to find out. The nurses gave us a badly printed handout from the internet, but the words ran off the page, and didn’t make sense anyhow. I managed to absorb the fact that Caoimhe had standard Trisomy 21, which meant that in every cell of her body lurked an extra chromosome ready to cause potential damage. I could still manage a twisted smile to think of all the years I’ve militantly refused to buy genetically modified food, yet I’d given birth to a genetically modified child.

As the days passed, I continued to struggle with the breastfeeding, with little support. I remember feeling incensed when one of the midwives called her lazy. I knew nothing about Caoimhe’s condition, but I could see her gamely trying to latch on and I could feel her frustration when each attempt failed.
There were blissful moments too. When the ward was quiet, Conor and our two girls had gone home, and I could look down at her and she was just my beautiful baby with perfect skin and big dark eyes. It was like the two of us were encased in a safe warm bubble, but then thoughts of the future would barge into my mind like a gatecrasher at a party and the moment would be lost.

I couldn’t equate this perfect child with my image of a person with Down syndrome. I feel embarrassed now, 12 weeks down the track, with my ignorance. But I have had very little contact with anyone with the condition, and my images were outdated. Growing up in a small village in the north of England, there had been a home for the mentally handicapped on the periphery and I’d seen them there. Badly dressed, overweight men and women with pudding bowl haircuts, who talked funny. People to be feared and avoided.

Nobody wants that for their child. I felt like the 13th fairy from Sleeping Beauty had come along and cast a wicked spell. For Down syndrome strikes at the heart of society’s two most valued attributes; looks and intelligence. Needless to say, I was ashamed of such thoughts. I’d worked hard to bury my prejudices and develop some sort of godless spirituality. Neither Hi Five nor Barbies are encouraged in our house because I do not want my girls to grow up obsessed with their appearance. But look at me now! Crying because my youngest daughter may end up with a bull neck.

Four days passed in the hospital, with me struggling to contain my intense and ambivalent feelings, not to mention the incessant thoughts, which ricocheted around my brain like boiling bubbles in a closed pan. On the fifth day, she came home and we attempted to reconstruct family life from the wreckage of our crashed hopes. I remain eternally grateful to friends who rallied round with their quiches, cooked dinners, and bottles of wine, who’d take our children on outings to give us space to grieve, without expecting anything in return. Conor and I are both private people who up till now have been crap at asking anyone for help, even each other. We felt gauche and awkward in the face of such kindness; our vulnerability made us cringe.

Slowly we began taking bigger forays into the world of Down syndrome, only to beat a hasty retreat when we inevitably bit off more than we could chew. We’d go to the local library and arm ourselves with books we were too afraid to read. The higher incidence of disease and illness to which Caoimhe was prone, read like a shopping catalogue. Heart problems, respiratory infection, leukaemia, epilepsy, blah blah. Like children watching a horror movie we’d peep through latticed fingers at the black and white photos contained within the pages and then cover our eyes. I could only go so far before casting the book aside in favour of a Jilly Cooper blockbuster I’d also picked up to cushion the shock. How lovely it was at the end of the day to run away to Larkshire, where all the people were sleek and gorgeous and the only thing they cared about was humping each other.
 
 
 

The problem was that the literature we found was woefully outdated. Reading the bibliographies at the back of one book, with titles such as ‘Bernard: Bringing Up Our Mongol Son’ and ‘Johnny’s So Bright, What A Shame He’s Retarded‘, left us bleating with laughter whereas just a few months ago, we’d be too politically correct to see the humour. Conor reckoned it was like Irish jokes, only the Irish are allowed to tell them. Similarly, it was OK for us to laugh because we were now part of this world. Black humour, but then there is no place where laughter is more needed than in the dark.

We lost count of the number of people who kept telling us that babies with Down’s are "happy and loveable", which was like being offered a consolation prize on school sports day. It annoyed me because I felt it denied Caoimhe the chance to be seen as an individual with her own personality. I didn’t want her to belong to a homogenous group of happy halfwits.

She is a jolly baby, but so were her sisters. In fact, if it wasn’t for the obvious physical differences, there isn’t much to set her apart. So far, she has reached all the expected milestones and slowly we are daring to dream.

When she started babbling - early too - I proudly joked about her being the first person with Down syndrome to graduate from Monash. In Ireland a teenage girl with Trisomy 21 was in the newspaper last week after scoring two As in her Junior Cert (Year 10) exams. Perhaps we are only on the cusp of realising what these people can do given the chance.

Still, the worry remains. There are so many questions we long to ask but are too afraid of the answers. The nights are the worst, when life’s existential questions rain down like a meteorite shower. Who will look after her when Conor and I die? The natural order of life sees your child gradually unravel from your apron strings till they are mature independent adults. People sigh about their children growing up too fast, but I panicked at the thought of Caoimhe being with us for good. I know there is sheltered housing for people with disabilities which gives them semi-independence, but I imagine I’d never stop worrying if she was OK.

Would I come to terms with the disappointment? Ours is a society that is used to getting what it wants and while we can tolerate and accept people like Caoimhe, nobody actually wants a child with a disability. Pre-natal screening and terminations exist to relieve us of the fear of difference and the pain, heartache and responsibility, which goes with it. Here, in the midst of a reproductive heat wave, the fertility gods can design babies right down to their eye colour. Sperm sold on the internet boasts of its owner’s high IQ. Perhaps mine are the misshapen memories of youth, but as a child I saw more people with Down syndrome than I do today. I worry that by the time Caoimhe emerges into adulthood children like her will be gone forever.

Paradoxically, the future is brighter today for people with Down syndrome than it’s ever been. The average life expectancy is 55 plus, and there is a whole smorgasbord of experts out there who can help my child live as normally as possible. At 10 weeks into life she is already hooked up with a physiotherapist and speech pathologist. Chances are she’ll attend the same state school as her sisters. I can’t help wonder what it would be like for her, though, to be the only child in the class with Down syndrome. I worry she’ll be the butt of playground teasing. Sometimes in my mind’s eye I see her as a teenager, boarding a bus and everyone staring at her. I see her trying to buy an ice cream and being laughed at as she struggles to count her money. I see her wanting to look like the pop diva of the day, and crying because she never will. But these are piffling concerns compared with others I have. They are too scary to voice.

Meanwhile, I throw myself into early intervention programs. With my other two daughters, I took all their milestones for granted. They were both early movers and shakers without much input from me. I thumbed my nose at the so-called educational toys and left them to play with their imagination. Now I’m filling the house with brightly coloured squishy rattles that ping and buzz, and mobiles that play canned lullabies. I read somewhere that listening to Baroque music can improve the number of brain synapses, and Bach’s rhythmic, methodic counterpoints fill the space between conversations in every room. Bach at breakfast, Bach at bathtime, Bach at bedtime. Baching mad.

Sometimes I wonder if the therapy is about helping her, or me, by making her more acceptable to a critical society and giving me something to focus on. I had no say in constructing a child with her condition, but I can play a part in how she develops. Yet in doing so, I sometimes wonder uneasily if I’m creating a child who is too sophisticated for institutions, but still too vulnerable for the real world.

I hope in time as her personality continues to emerge, I will get better at separating the child from the condition. My two daughters can help me with this. When the time was right, I told them as matter-of-factly as I could, that Caoimhe had a condition called Down syndrome and would learn everything that they learnt, but in a different way. The next week my eldest child stood up in front of her class and told everyone about her little sister whom she accepts unconditionally.

Will my sadness ever leave? Probably not, I decided. It will continue to be trammelled by a whole host of other feelings most of all joy. Time, that great Band-Aid, will see emotions shake and settle like the flakes in a child’s snow dome.

I guess that’s why I am writing this. To make sense of the senseless, to create some order from the chaos in my head, so perhaps I can sleep at night. The days are too busy to pay attention to the incessant thoughts, which form a continual backdrop of interference. So far, Caoimhe’s life’s been a conveyor belt of tests and appointments, which provide reassurance, but leave little time for me to get on with the job of mothering. It takes a plethora of professionals to raise a child with a disability and I can’t help but feel at times that my nose has been put out of joint, my role diluted.

Still, we’ve come along way in a short time. A lot of my initial fears remain unfounded, as is so often the case. People ask if I wished I’d have discovered her condition in pregnancy but the answer remains an emphatic no.

Fear permeates our perceptions, it is easy to be afraid of the unknown, to create monsters where there are none to be found. From the very beginning, holding her has been my strength. I can bury my nose in her neck and she will grab my finger. In these moments, nothing else matters.

I’ve ceased to anticipate what people might think. I used to dread people’s reactions, especially the elderly. I envisaged a weathered face peering in the pram, buckling with shock, and a voice exclaiming, "Oh! a mongol!" But when Conor wheeled her down to the local milk bar the old lady who runs it merely smiled and said: "What beautiful eyes."

There are people who don’t know what to say, who stumble over comments about her lack of hair, her tiny size. But there are plenty that admire her beauty, who can see beyond the physical traits that go with Down syndrome, to find Conor’s cheeks, my mouth, an expression of her sister’s.

I look at my baby, with her beautiful almond eyes, and her slow smile, which starts at the top and spreads downwards so that her whole face beams. All my fears are momentarily quashed, my prejudices melt away. She raises her hands and waves her fingers with all the grace of a Balinese dancer. They are beautiful fingers, long and tapered. Just right for playing the piano. We are back in our bubble, Caoimhe and I, and life is good. The feelings that wrap around my bones are blissful; they warm the very core of my existence. Beautiful girl, we are so lucky to have you. I don’t know where she fits in society, but a family is a world in microcosm. And I do know that right here, right now, she fits perfectly within my arms.
 

We do not always get to hear straight away about the birth of a baby with Down syndrome in Liverpool. This may be because the ‘professionals’ involved are not aware of our existence and, therefore, do not pass on information about us.

On the other hand, some ‘professionals’ are under the impression that we are a group of paid workers with office facilities etc. They are often surprised when we explain that we are parents of children with Down syndrome who work voluntarily to offer support, advice and a listening ear to other parents in the same situation.

Now and again, parent members of DSL will tell us that someone they work with, a neighbour, a relative or friend of a friend, has had a baby with Down syndrome but has not received any advice or support. My response to that is, “Please tell them about us and we will do what we can to help!” All contact details are on the cover of this newsletter.

We provide a ‘New Parent  Pack’ containing literature about Down syndrome, which is free to new parents. If they would like to talk to someone we will try to arrange to visit.

We are all unique and deal with the birth of our child with Down syndrome in our own way. The wishes of parents are always respected and we will only make contact if requested to do so by them but if they don’t know about us they don’t have the choice!

Pat Baxter
DSL Treasurer & Listening  Ear!

Our Saturday morning football coaching sessions are continuing well but there is still room for more children to come along, girls as well as boys. Alan, our coach, is insistent that these sessions should be about having fun and there is no doubt that the children do enjoy themselves. However, because the children enjoy themselves, they are picking up lots of football skills along the way. An added bonus is that parents get the chance to have a good old natter in between cheering the children on.

The session runs from 10.00 a.m. to 11.00 a.m. each Saturday morning at the Greenbank Project Gymnasium in Greenbank Lane, if you need directions give Alan a call on 0151 724 6181. There is no strict age limit, we leave that to your discretion, so if you think your child would enjoy it, bring them a long. Although the sessions are primarily for children with Down syndrome, if you think it would be helpful for a brother or sister to come along as well, that would be fine.

It costs £18 for us to hire the gymnasium each week, each child contributes £1.50 per session, Mossley Hill Athletic Club contributes £6 per week and any shortfall is made up by DSL.

Back in the summer, Mossley Hill Athletic Club held their medal presentation ceremony at The Police Club in Kensington. Alan arranged that our footballers each received a medal in recognition of their achievements (see picture above).

A big ‘Thank you’ to Alan and his team of helpers from all at DSL

CHILDREN WITH DOWN SYNDROME, THEIR BROTHERS AND SISTERS, MUMS DADS, CARERS, GRANS AND GRANDDADS ARE CORDIALLY INVITED TO OUR CHRISTMAS PARTY
TO BE HELD ON
SATURDAY 6TH DECEMBER
FROM
2.00 P.M. TO 5.00 P.M.
AT
ST ANTHONY OF PADUA CHURCH HALL,
QUEENS DRIVE, LIVERPOOL 18

BARNABY THE CLOWN WILL ENTERTAIN THE CHILDREN AND THERE WILL BE A BAR AND BUFFET AVAILABLE.
WE ARE ALSO EXPECTING A VISIT FROM FATHER CHRISTMAS.

To help with the catering, please inform:-
The Secretary, Down Syndrome Liverpool, P.O. Box 1,
Mossley Hill D.O., Liverpool L18 4SD
No later than 29th November 2003