Saturday, 25 August 2012

Artist meets Artist

Like-minded women

We will never forget Claire Beynon's beautiful words she wrote in her blog the day after the launch of The Madonna in the Suitcase in the Dunedin Public Library.   I want to acknowledge my gratitude to Claire for those words and for her friendship all these years.  There are not enough words to describe Claire.  She is truly amazing, talented, gracious, and a true and beautiful friend to many.  Her artistic energy branches out into art, into writing, into LIFE, and into issues that need attention.  And much more.  Read her blogspot to be enlightened, spiritually nourished and uplifted.

March 2012: Claire and Miriam on Miriam's 50th birthday

ODT Article

Down Syndrome Scanning and Choice

Just over three years ago the ODT published an article about Down Syndrome and its Ups and Down's.   This article also highlighted the choice parents-to-be  have of taking tests for possible defects.
As I have mentioned in a previous post, both Bart and I are glad we did not have the option to choose these tests.  We have loved Miriam and our sons from the moment they were born.  We have always been aware that our daughter would need just that extra care and we will stand by her for as long as we can.

Saturday, 18 August 2012

MIRIAM'S LIFE In May 2009 our family and many friends celebrated, not only the launch of The Madonna in the Suitcase but also the life of Miriam, our courageous daughter, and of all those people who have been, and will be, born with an extra chromosome. Our good friend Janice Rowley of Timaru took the following photo:

Miriam, Bart and Huberta at the launch of The Madonna in the Suitcase

Several people have asked me why I wrote this book. But how could I not with such a Life Inspirational Model around me, day-by-day? With this book I want to share my love and admiration for her, and a little of my own journey too. Miriam's journey has also been my journey, a journey of learning and understanding and I want to share this adventure and the small and large differences which we had to learn. Miriam's life is the book's main focus, with an emphasis on Ability rather than Disability. But it is also a story about Bart and I making a new life in a strange land.

A talented artist and a woman whose intelligence and involvement in life has been admirable, Miriam had a full life before her stroke. She was involved in many different activities. She worked at the IHC's Food Packing Department, weighing and sealing different types of food. Four times per week she went to art classes at Queen's High School, she was on the committee of People First, and she appeared regularly on the Hills AM Radio Show (now Toroa Radio), where the No Limits radio program was organized by clients of the IHC. Every Friday during term time she worked a few hours in a voluntary capacity at Knox College Library, sorting filing cards into alphabetical order, photocopying and performing other tasks. Barbara Frame, the librarian at Knox during part of that time, told me that each week she was amazed how fast Miriam worked and how she was always looking for other things to do. She also said, 'We looked forward to Miriam arriving.' Our daughter – a woman of intense individuality, and with an ability to reach within herself and express complexities, profundities that enrich the world. Her life has reflected an unspoken motto: Get on with it. Even now. She has an independence within her, trying to do things first by herself.

Right from the beginning I've wanted this book about Miriam to be a love story with a difference where readers are allowed to overhear a private conversation; and also experience a bit more than just a glimpse into the world of a family with a handicapped child. I also hoped that the story’s positive content would allow readers - and especially parents and caregivers of people with special needs - to be able to identify with aspects of living with limitations. But one task I set myself: I didn't want it to be sentimental and I wanted to focus on Miriam's ability. I didn't want to put too much about myself in the book. It has been about my learning and understanding of the reality of another person, a person with an extra chromosome. Her reality was different, and we had to learn it and to interpret it to ourselves. And to others. Whatever I've written has been gained from Miriam's life, from our life in Dunedin, New Zealand. Any research has been done by delving into my memory, often helped by browsing through old photo-albums and reading letters we wrote since 1960 to our family in The Netherlands and which were returned to us when we visited there for the last time in 1999.

In this book I've also tried to explain how, as new parents, we coped after we were told that our child would have special needs. I was 24 when Miriam was born, statistically very young to have a Down syndrome child. In the early sixties it was quite common for a Down syndrome child to be called a Mongol. I resented that term even long before Miriam was born. It was hard to define my feelings at that time, but I have tried to separate them into three different aspects: feelings of guilt; feelings of isolation, and fear for the future.

 Feelings of guilt: Often, with the birth of any child that has special needs there are feelings of guilt. As parents we keep asking ourselves, Where did we go wrong? I tell you where my thoughts and feelings went after Miriam's birth: my husband and I had arrived in Dunedin in May 1960 – coming from a country still recovering from the effects of the second world war my weight was below normal for my size but within half a year I'd added 20 kg. The butter, the shortbread, the cakes! The chocolate bars, the milkshakes with ice cream! It was lovely. But after nearly a year I decided to loose weight, and with the help of pills I gradually managed to get back to what I weighed when I arrived here. Then I got pregnant. So, naturally, after Miriam's birth I wondered whether those pills had been the cause of Miriam having Down syndrome. Even though it was hard at the time to put those wandering thoughts to rest, yet even as a young couple and inexperienced parents we soon realised that Miriam's extra chromosome was nobody's fault. And it was a relief to reach the point when we decided that we wanted to move on rather than waste a lot of precious energy trying to pinpoint a blame.

 Feelings of isolation: During those early years I remember being consciously aware of having no family around. No email, no cheap phone calls. Letters took a week to arrive and although there were many questions I'd wanted to ask my mother, by the time she would have replied, most problems would have been fixed. But there was always Dr Spock's book which became my main resource of finding out what babies needed. I admit I was lonely, my husband away to work all day, no car, no phone, an old house with a loo outside. We had made friends but they were settled and as lovely as they were, most of them had an attitude of: you've chosen to come here, so make the most of your life. In Chapter 16 of The Madonna in the Suitcase I write about Miriam's psychotic episode caused by an undetected thyroid deficiency. That again was a lonely time because Miriam could not tell us exactly what was going on inside her body, and Bart and I felt as if nobody understood the extent of her illness.  That time was so very different from the period after Miriam's stroke when she came home from ISIS. During that first year we had all the help we needed and we were supported by the caring and dedicated staff at ISIS. A supervising care continues to this day for which we are deeply grateful.

 Fear for the future: After Miriam's birth my fear for the immediate future was: how can I manage, how can I cope? During those early years finding the right words was a barrier. I'd learned English at high school and had worked as an au pair in the U.K. Yet, although I spoke it reasonably well, there were always the subtle nuances which made communication just that bit harder. Those years were full of many uncertainties, many unanswered questions. When the twins arrived, I was even busier but I still managed to read. Novels, autobiographies, biographies – books which presented their own way of finding out about life and fears other people had experienced. Writing letters to our family was good too - but, oh well, it didn't matter that there were complaints that my letters were like newspapers! I can't remember exactly when, but one day I realised that it would be important to talk to others about some problems we had experienced. Any information is important in this context so that outsiders get an idea what it is like to cope, not only with the family member concerned, but also with issues surrounding a young or not so young person with special needs. Not only physical and emotional needs, but also how one's child is perceived by a community. Years ago I met a woman who at that time had teenage children. I used to tell her little bits about Miriam - what she had done; what her next plans were. I'd repeat some of Miriam's delightful and often strong remarks. This woman, in turn, would relate this remark and other comments to her children. Later, she told me that her son hadn't realised that handicapped people had feelings. He had said to her, 'I didn't think that people like that could say things like that.' From that time his perception changed and instead he would greet rather than abuse. This episode again was for me an indication of the need to keep talking about Miriam and about her achievements, and about our experiences. Even at that time it also raised questions about the narrowness of our view of intelligence.

 Perhaps all of society is like the boy who was surprised that Miriam could 'say things like that.' She cannot only say 'things like that' but she has proved that same openness and intelligence in her paintings. Miriam loves to watch television and while she watches she likes to make running comments, whether the programme is netball or one of the soaps such as Shortland Street, Coronation Street, The Eastenders and the police dramas. The other day Miriam and I were watching a Miss Marples programme: a policeman was interrogating a suspect. After the policeman had asked a particular question, the only reply the suspect could make was, 'what did you say'? Miriam leaned forward in her chair and said instantly, 'You heard'! Next that comment was repeated by the cop! And I thought, You don't miss much! You hear, and you observe.

Miriam talking to Foster

 We are fortunate if we can hear and if we can see. And my hope is that by reading this book, more and more people will understand the importance of acknowledging the gifts and talents of our special children. The birth of our daughter has given us so much. An awareness of important values. Unconditional love. Acceptance of people and situations. There have been very difficult times as you will read in the book, but as a family we have stuck together. From the depth of my heart I can say that in our case I am glad that scientific advances have not stopped us from making the most of whatever has come our way. It is probably easier to say this in retrospect but I know that Bart and I would not have wished it any differently. So much emphasis has been placed on perfection, everything bigger and better and more streamlined to suit the extreme consumerism. Yet I cannot think of my daughter as being imperfect. She is not in any shape or form. She is different. As we all are different!

Wednesday, 15 August 2012

Caring for an adult child

Our daughter Miriam was born in 1962 with Down Syndrome. My husband and I were 25 and 24. Our twin sons Foster and Raymond were born in 1964.
Miriam's birth: Miriam was the first baby our GP delivered. I remember that day asking the nurses 'is she all right?' I looked at the space between her eyes, how she held her arms and legs like a frog. That first night I asked the nurses again, and again. The nurses must have contacted the doctor because the next evening at visiting time he came into the room, I looked at his face and said, 'she is not all right, is she!'
A few months before Miriam turned 40 she had a stroke which left her initially severely paralysed on her right side. Three months after the stroke she came back home to live (she'd been in a supported flatting situation since 1995). She'd had a full life which now had been drastically curtailed. My husband and I again became her full-time carers in a different way.

Caring for an adult child: A child that stays a child, perhaps a 'young 10-year old'. But also an awareness of how that child is nearly the same age as I am now due to the accelerated ageing of DS people.

The last few years Miriam has had a lot of medical problems, often resulting in operations. Gall bladder, eye operations. Ever since the stroke she's had to wear a splint on her right leg but her foot/ankle never came back to 90 degrees. Consequently ulcers under her feet. In 2009 she had an operation to have her Achilles tendon lengthened. Wasting of her leg, massage. Last September she had a bad fall and we are now back to carer support for showers etc six days a week as well as 3 x per week physio exercises. She now also has to wear a knee brace. We cannot leave her by herself any more, sitters and problems. MoH helpful but with closure of the ISIS facility no alternative care place can be found.

Aspects of caring:

Emotional level: protective, aware of her feelings – her inability to voice her thoughts. Careful to be a translator, her 'voice', her autonomy.
Social limitations: not the same flexibility as peers. We now need to get sitters to stay with her whenever we want to go out. I learned also that I have to check I don't make her wellbeing my main topic of conversation.
Personal level: I want to cope for as long as I can but have to accept that in my mid-seventies I am sooner exhausted than I was ten years ago.
Coping techniques: Acknowledging the stress incurred. As hard as it is I need courage to let others know that I am stressed. I've learnt to be more aware of my needs. I am grateful to be able to meet friends for a good natter and am lucky to have lots of hobbies: writing, reading, music, swimming, walking, gardening, Pilates. There are not enough hours in the day.
Financial: Stressful, using alternative remedies, costly appointments both for Miriam and me. Prescriptions by doctor often generic, and I end up paying heaps more for the original medication. I'll never forget the audiologist who suggested I needed a regular massage to help with tinnitus.