Chapter twenty-eight
HAVING CHILDREN
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Chapter twenty-eightHAVING CHILDREN |
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Note: This is the original text of the chapter in the 1992 book and it has not been updated. Page numbers refer to pages in the book.
Deciding whether or not to have a child
How can you help yourselves reach a realistic decision?
Taking the arthritis into consideration
Fostering and adoption
Parenthood: some personal experiences
Helpful people and organisations
Publications
Bringing up children on your own
Some shopping by post addresses
"Having arthritis in its acute form, and with two small children to look after… is a bit like trying to climb Mount Everest in winkle-pickers. There are some days when you don't get very far."
So says novelist Marie Joseph! She produced one infant before developing RA, and one after. Both are now grown-up, and to judge from her entertaining autobiography, One Step at a Time (Arrow Books, now out of print, sadly), both flourished despite any mountaineering problems. On the plus side, they probably learnt a lot of valuable lessons about life along the way, and brought Marie and her husband a lot of joy. For many parents with arthritis children are a real incentive to keep going.
Those of us with arthritis but without children face a choice that may be difficult, and raises lots of questions. Is arthritis hereditary? How would pregnancy affect my arthritis and vice versa? How could I give birth with hip, knee, etc, problems? With stiff, aching joints and enough difficulties already looking after myself how could I cope with a helpless, wriggly baby, an energetic mischievous toddler, and the countless physical and emotional demands of a schoolchild and temperamental adolescent? What about my partner, too?
Anyone, with or without arthritis, considering whether or not to have children needs to make that decision carefully, taking into account not only the feelings and circumstances of both partners, but also those of the prospective newcomer to the world. Every newcomer needs and deserves love and security and commitment by its parents for 24 hours a day for year after year. Sadly, too many children are born without careful prior consideration, or for questionable reasons: to patch up a rocky relationship; 'because everyone else has them' and would-be grandparents apply pressure; because they're cute and every other magazine and TV picture shows wonderful mother-and-baby pictures where nothing ever goes wrong; because you want someone to love you and make you feel needed; because you want to be 'normal'. Or it just simply 'happens'. The consequences of such questionable reasons for having children are, alas, only too visible around us.
There's usually no reason why the arthritis itself should stop you producing a child, but you need to think things through extra carefully first. Even if you're fit, child-rearing is a tough and exhausting job physically and emotionally and you'll need to base your decision realistically on your own particular circumstances and abilities. If you decide to go ahead, then it's crucial that you don't just 'let it happen': forward-planning, for instance stopping or altering drugs (even before conception), and making practical arrangements, is essential.
For some of us, as for people without arthritis, the decision may be to remain child-free. That was my decision. Arthritis wasn't the only reason by any means, though it was arthritis which made me think twice about it. I made the decision before I met my partner, so had to make sure any conflicts in our feelings were aired and resolved. For me, my abilities and skills most definitely lie in areas other than housework and childcare and I much prefer to concentrate on what I can do rather than having to struggle constantly with things I'm not good at. I'm fond of children, and enjoy other people's (in moderation!), but am glad that ours remain happily unborn, and happily unaware of what can be a depressing and cruel world.
Deciding to be child-free isn't easy, arthritis or no arthritis, but there are other ways of fulfilling maternal or paternal instincts, or finding a 'purpose in life'. People who don't have children, through choice or infertility, are sometimes thought freakish and given a rough time by others: I do think it would help if everyone were reminded of how much child-free people give to the world and its children without producing a child themselves. Several of the nicest people I know haven't had children. Instead they've been vivid examples to me of how full and unselfish a life you can have without children: so many others have benefited from their abundance of love.
BON (British Organisation of Non-Parents) is a support group of and for people who believe in 'responsible parenthood', and who believe that the choice to be child-free should be respected and unpressured. BON provides information and moral support on the choice of being child-free. Send an SAE for leaflets You Do Have a Choice, Am I Parent Material? and No Regrets.
For childless people (those who want them but are unable to have them) there's the National Association for the Childless.
How can you help yourselves reach a realistic decision?
I don't want to seem too negative! Though some marriages may suffer under the strain of arthritis-plus-baby, other people do cope, and do believe the pros outweigh the cons. It's how you cope with the difficulties that really matters: forward planning's crucial, plus support from other people. If you can cope with problems in an atmosphere of courage and love, your child will learn valuable lessons. But it's only realistic to appreciate that it's not going to be easy. Children do bring joy and happiness, but are you prepared to take on the stresses and strains involved in return? Some of us say 'no', however great the rewards. There are other ways of getting and giving joy and happiness.
Counselling, from your doctor or a Relate or SPOD counsellor, might help you both discuss this complex decision rationally and realistically. Try to get a counsellor with up-to-date knowledge of your form of arthritis.
Taking the arthritis into consideration
Get ARC's Arthritis: Sexual Aspects and Parenthood (free, but send SAE) and remember, if you want to start trying for a baby do first, discuss your plan with your rheumatologist. Some drugs should be stopped even before a baby is conceived, and you'll need to think through between you any other implications. Make sure from then on that any other doctor who treats you knows about your plans too.
Is it hereditary? Haemophilia is really the only type of arthritis which is clearly inherited. Gout tends to run in families. ARC's booklet says: "There may be a small tendency for many other forms of arthritis to appear slightly more commonly in some families than others (for example, rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis). But the chances of an affected parent directly handing on the disease to his or her children is very small indeed." Discuss worries with your rheumatologist. A list of genetic advisory clinics appears in RADAR's factsheet Access to Paramedical Services.
How might pregnancy affect your arthritis and vice versa? Again, do discuss this with your rheumatologist. If you have RA conception may be delayed slightly. During pregnancy itself, many women find the RA magically improves. Symptoms may settle down or completely disappear. Unfortunately the RA may flare up again after the birth, as it did for Mary*:
"I had difficulty coping with him. Mum came along once a week to wash out anything that needed to be done by hand and to do all my ironing. When S was two months old we went to stay with Mum and Dad for two weeks and ended up staying for five or six. I simply couldn't cope. I couldn't pick him up; put him down, feed him solids, bath him or change him. It was like a nightmare and it just got worse instead of better. We went home eventually not because I was any better but because it was becoming obvious that the problem was not just temporary and we'd have to learn to live with it.
"Mum came over two or three times a week. F went into work only when he was actually teaching. I struggled with pain, putting more effort into the simple act of changing the baby's nappy than most people would put into spring cleaning."
(Mary's two sons are now grown up and flourishing.)
With AS your back may play up more during pregnancy. Remission is much less likely than it is with RA, but, again unlike RA, ARC says "the arthritis is rarely aggravated after the baby has been born". NASS spring/summer 1990 newsletter had an article on pregnancy and AS.
In Lupus, a Guide for Patients, Dr Graham Hughes summarises what's known about pregnancy in women with lupus (SLE):
| Facts | Pregnancy is usually uncomplicated in lupus. There is no increased risk of lupus flare in pregnancy. There is little risk of lupus in the infant. |
| Problems | Higher risk of miscarriage. Increased risk of lupus flares after delivery. |
Drugs and pregnancy In February 1981 the Committee on Safety of Medicines concluded that 'it is impossible to prove beyond a shadow of a doubt that any drug is absolutely safe in pregnancy' and 'drugs should not be given during a pregnancy unless they are essential'. Consult your rheumatologist about your drugs before you become pregnant. Some drugs (eg gold or penicillamine) should be stopped even before conception. S/he may advise continuing others, for instance steroids for someone with lupus, but perhaps with altered dosage (see the note above about St Thomas' Hospital).
Consult your doctor too before buying any 'over the counter' drugs (including aspirin). Don't fall into the trap of thinking that herbal remedies are any safer (see page 75). Remember to cut out alcohol and smoking too. If you're thinking of breastfeeding, remember that drugs can pass through the milk to the baby, so you shouldn't breastfeed while taking a drug unless your doctor tells you it's safe to do so.
Men with arthritis: you too should check on your drugs with your doctor before trying for a baby! In Living with Arthritis (Lennard/Collins), Alan Rogers, who has AS, explains:
"I remembered someone saying that the drug I was taking could affect the male sperm and cause damaged babies. I checked this out with the manufacturers, asking them for any research papers they had. I got a whole load of literature from them addressed to 'Dr Alan Rogers'! I read it and, sure enough, discovered that the drug can affect the sperm. I saw my doctor about it and switched to another drug. Later my wife gave birth to two boys and they are both fine."
X-rays Avoid X-rays during the first three months of pregnancy. Make sure your rheumatologist knows if there's any possibility you might be pregnant, so X-rays aren't done. That's why radiographers usually ask when your last period was, as a check.
Giving birth Discuss this with your doctor. S/he may recommend a Caesarian section for delivery, for instance if you have stiff hips or small pelvis. If you have AS it's important to get mobile again as quickly as possible after giving birth or a Caesarian section.
Emotional adjustments Does your arthritis make you tired and irritable? Do mobility problems make you feel socially isolated? Be prepared, alas, for such difficulties to become worse after the birth of a baby and do what you can to anticipate them and work out ways of coping. Though Sarah Litvinoff's The Relate Guide to Better Relationships is a 'non-disabled' book, it looks helpfully at the possible emotional impact a first baby may have on a partnership.
Ante-natal classes If mobility problems make it difficult for you to get to these, there's a cassette called Happy Birth Day which covers things they'd tell you at the classes, like relaxation, breathing, exercises (from Professional Educational Training Aids Ltd). Some NCT teachers can give home tuition.
After RA struck, Pamela Waterhouse was miserable at no longer feeling "a useful, capable adult", despite magnificently looking after her own family of two sons and a husband. Challenges enough for anyone! She persuaded them to agree to her taking on the extra challenge of being a foster mum. After six months' questioning by social workers and fostering officers she was finally accepted: "Family and friends thought I was mad. And they were probably right!"
She wrote a lively article about her experiences in In Contact spring 1987, and pretty challenging they were too. She had to cope with some very difficult children, as well as her family and the RA. It was "rewarding" but "like hitting your head against a brick wall – it's so nice when you stop!…" Well worth reading if the thought of fostering crosses your mind. Another funny and touching account ('non-arthritic') for anyone thinking of fostering is Beth Miller's Room for One More (John Murray and National Foster Care Association).
The British Agencies for Adoption and Fostering (BAAF) has a range of leaflets and booklets. Send an SAE for information. Parent to Parent Information on Adoption Services (PPIAS) is a self-help support and information service for people already adopting or thinking of adopting.
Talk to someone in a similar situation. The NCT or your Young Arthritis Care Contact should be able to put you in touch with someone. Next best is reading the experiences and tips of other parents with arthritis. In In Contact, a few years ago, Tracey Boardman described how she coped with her daughter aged 9 l/2 months. It was hard work, and her RA flared up after Carly was born, but she was lucky to have help and support from husband and relatives. Her OT, Emma, was marvellous, too:
"My RA affects all my joints, my hands being the weakest. I have four replacement knuckles in my right hand, so lifting Carly conventionally was out of the question. To overcome this a sling was fastened using two terry towelling nappies for strength with webbing for handles. Carly would lie on the sling in her carrycot and when I needed to pick her up, I would slip the handles around my neck and lift. Simple and safe…
"Emma and the team designed a trolley to hold the carrycot at the right height to ease the strain on my back. The trolley had wheels, each with its own brake, which meant I didn't have to carry Carly around the house, I could wheel her there. I am in a bungalow which also helps. A similar trolley was fashioned for Carly's baby bath to the right height for the bed. I can sit and bath her and afterwards put her straight on to the bed. I feel safer like this as the time she is wet and in my arms is only a few seconds. It gives me plenty of elbow room and space for Carly to roll too. The height of the mattress in her big cot was raised, which again saved my back and was ideal for nappy changing. Some cots do have a two position fixing for the mattress when you buy them.
"Nappies – using nappy pins was out of the question. I cannot open or close them. So I hit upon the idea of using velcro on terry nappies instead. Emma arranged for one to be made. However, this proved impractical, it was too bulky, they had to be folded the same way each time, and with repeated washing the cotton bits would stick to the velcro rendering it useless. The answer then? Disposable nappies. Still not so simple, as we were carrying out all these experiments before Carly was born and at that time the tapes on these nappies were such that once stuck they stayed stuck. Quite a bit of force was needed to wrench the tape from the nappy as it pulled the plastic nappy outer with it. This is when my teeth came into use – the day I need dentures, I'm lost! – By biting the end of the tape with my teeth and pulling I manage to undo them. Thankfully shortly after Carly was born the manufacturers brought out 're-sealable' nappies. Now I can just pull the tape from its second cover quite easily…
"From the nappies to clothes. Buttons – yes, poppers no. How many button through babygros have you seen? My answer is velcro. Sewn over the poppers it means I have no problem. Carly has it on babygros, vestpant suits, dungarees and pyjamas.
"This brings me more or less up to date. Carly has a high chair which sits on a platform with wheels. The tray also has large handles so I can remove it easily. I can take the chair to Carly wherever she is and I don't have to lift her far. As I cannot get down to the floor either to put Carly down or lift her up, Carly has been restricted to her carrycot or our bed and has not learnt to crawl. So her latest acquisition, a raised playpen, with the base at hip-height is marvellous. One side opens like a gate to give me easy access. She has room to move around and play with her toys. There I know she is safe and I now use it to dress and change her in.
"All these aids are priceless to me. They mean I can keep my independence and look after Carly as I want, without having to rely on others to do everything for me. This doesn't mean I don't want or need others, because without their help and support, life would be very hard indeed. My husband in particular was irreplaceable those first few months, as Carly's night feed, colic and my flare-up all came together. My mother and mother-in-law were a great help too, dealing with housework and meals. These days things are easier and I do the work myself. I will admit though, I appreciate the rest once a week when mum comes over. Hard work – yes, but when I look at Carly I wonder what I did all day without her before."
Unlike Tracey, Phil's RA was diagnosed after the birth of her son. Four years later she had a daughter. In In Contact she gave some tips on coping:
"Really what you need to do is get a bit more organised than you would be normally – and if you are normally so organised that everything has to be done on a certain day at a certain time then you'll just have to learn to relax a bit. Your baby really won't notice if it's Wednesday and the windows haven't been cleaned, and no, your friends won't notice either…
"Take some rest breaks during the day to save you from getting overtired. One way is to take a nap at the same time your baby has a sleep, at least for one session. Don't try to get all your jobs done while the baby sleeps or you'll be shattered. You can do odd jobs while the baby is awake, it will help keep it amused to watch you. And I'm sure that your partner could be persuaded to give you a hand with some jobs in the evenings and at weekends. You don't have to do everything for this little mite of yours, just to prove to yourself and others that you can cope. The baby is your hubbie's too, and of course, you may have some doting grandparents or family, even friends nearby who would like to help – let them.
"When you have visitors (and you'll have loads in the early days) don't pass the baby over if it's feeding time, if you are not breast feeding. And don't rush round making tea, cakes or sandwiches because you feel they need to be entertained… Get your visitors to make the tea (it will make them feel useful).
"Nappies. These are a problem for most mums. If the hospital or your health visitor has suggested you change your baby before a feed, then think again. It really doesn't hurt them to keep their nappy on for another 20 minutes or so, and once you have started to feed, they'll forget any discomfort in the joy of getting some grub and a cuddle to boot. Anyway, most babies choose to wet or soil their nappy during a feed, so you'll have wasted your time and energy and you'll still have to put another one on…
"…Can't manage to bath your baby, don't worry. Most of them scream all the way through it, well at first anyway. Just make sure you give the baby a nice wash morning and night to keep them cool and comfortable and smelling fresh and clean. Save bath days until there is someone to give you a hand and make it a family affair…"
What about when the child or children get to the mischievous, into-everything, stage?"
"As soon as Christopher started to crawl, I knew there would be trouble… that stage was a nightmare; we both experienced a great deal of frustration. Getting down on the floor with him was agony for me, so I tried to adapt. I found myself telling him off more than I wanted to, but I had to rely on words to restrain him because I couldn't keep up with him physically. I could not chase after him and retrieve him from the fireplace, or the wires… or the Christmas tree…" (Phil, again, in Michael Leitch's Living with Arthritis)
In OT Heather Unsworth's Coping with Rheumatoid Arthritis (Chambers) there's an excellent chapter, 'Coping with a Young Family: a Personal Experience', written by a mum who developed RA when her youngest son was one year old. Here's how she lifted him:
"For a child that can stand I devised a method of lifting which puts the weight on to the forearm instead of on to the shoulders and hands. Stand behind the child and put your arm between his legs. Put your other arm around his waist and draw him back so he is sitting on your forearm. Draw him closer to your body as you lift so that your arms and body take the weight with the encircling arm just steadying him and stopping him from falling. After a while the child becomes used to this method and helps…"
Another challenge was how to harness the baby in his buggy:
"I used a Mothercare safety harness to which a rein could be attached and used it for the pushchair, highchair and for walking. However, these have to be attached to two small anchor points in the seat of the chair. They are awkward to get at and fitted with dog-lead clips which are too stiff for a rheumatoid patient to operate. We solved this problem by making a single purchase which gave me total freedom. Go to a shop selling climbing or sailing gear and buy some carabina clips in a fairly modest size. These are used for clipping ropes together. They remain firmly closed in use but are opened easily by simply pressing down lightly on one bar. These we attached to the dog-lead clips and they remain permanently in position on the harness, to be clipped to the anchor points on anything I need or simply to attach the walking reins."
Resting's crucial; but how to fit it in?
"It is really worth ignoring the chores and having a set time every day to put your feet up. We made it a rule even when my little one grew past much sleep that he and I went to lie on our beds for half to one hour every day and I found this invaluable for recharging batteries before the school age ones arrived home. We did this immediately after lunch. Now there are no day-time rests, but I try to ensure we put our feet up on the sofa for a while after lunch and read a book together or watch children's lunchtime programmes. I certainly notice the days we don't."
If you have more than one child, you may find that one may help out with the other, and look on it as fun. A youngster may enjoy picking up the toys flung down by his baby sister from her pram or pushchair, or chasing off to retrieve a straying toddler. Some children enjoy repetitive but helpful jobs, too, like passing pegs to mum who is hanging out the clothes, or careering happily around pushing a shopping trolley. My nine year old godson thought one of the best things about his day trip to the zoo was being able to push me around in a wheelchair! But of course few children are angelic all the time. Mary* describes her youngster's antics on a bad day for her:
"S always seems to reserve his most throttling, boneshaking kisses and cuddles for days such as these. Then he insists on playing games which involve grabbing me round the knees in a fair attempt at a rugby tackle and swinging on me. The pain is bad enough, keeping my balance is practically impossible and the whole thing is aggravated by S's shrieks of delight at, what constitutes to him, a good game. I ought not to shout at him so much at times like these but it really does get me furious that he should find it so funny to inflict all this pain on me. Of course that's unfair because it's not that he finds funny. He isn't even aware that he's hurting. But the sight of him laughing is like a red rag to a bull. I'm sure it does him no great psychological harm anyway when I shout at him. He just shouts back. (Another good game)."
As children grow older you may miss being able to do some things:
"Your physical range of activities is limited, but your vocal chords remain intact. I discovered some time ago, when my footballing and cricketing talents were diminishing rapidly, that a good story laced with kisses and cuddles makes a very acceptable substitute." (PB)
How do you deal with a child's reactions to your arthritis? If they ask questions, children need honest, yet simple explanations, that don't make them feel worried, or ashamed about asking. They may worry that you might die, or might not be able to look after them any more. And they may need your guidance in dealing with curiosity and questions from other children. Margaret Mayson wrote:
"A child's remark, 'Why is that lady in a push-chair?' did not worry me, but my son at eight years of age was embarrassed. 'Silly nit', was his terse comment. I sought to mollify his feelings at being singled out as a child whose mother was 'different', and in doing so, became myself less sensitive to my disabilities. I found it a good plan to make fun of my 'wooden' legs and knobbly hands and to laugh at my struggles with girdles and 'tight fitting dresses – this in private of course; in public we behaved unostentatiously. One time, feeling very much aware of my limitations, I asked my son what he thought mothers were for. 'Oh, to make food and be there', was his reply. Truly masculine philosophy, but it helped me feel less useless. One of the doctors made a similar comment when I was lamenting my inability to dash about and how it affected my family. 'Well, there's one consolation, they know where you are and that's more than can be said of some mothers.'" (In Paul Hunt's Stigma, Geoffrey Chapman, 1966)
Older children might be interested to see Dr John Shenkman's Living with Arthritis (Franklin Watts, 1990), which explains rheumatic disorders in simple terms, with plenty of illustrations. Psychologist Robert H Phillips' Coping with Lupus (see page 27) includes comments for parents on dealing with reactions and worries of children and adolescents.
Discuss medical aspects with your rheumatologist. Plan with your OT how to overcome practical problems and minimise strains on your body and on your family.
Social services departments Services available vary considerably, and may not be widely publicised, so keep ferreting about. One YPA was particularly lucky:
"I have a Family Aid who comes four times a week… she takes us to Playschool in the car and on Mondays we go to Toddlers with my two year old daughter. The Aid stays with me so she can run after R and generally help me should my hip decide to be more awkward. On E's playschool days we go shopping, and do any other jobs I can't do while I am by myself. The Family Aid can work flexible hours, such as hospital appointments, which never seem to be on time. She's a great friend to all the family…"
Another mum going through a very bad patch paid out a fortune in taxi fares taking her son to and from school only to find later that her social services ran a service called Home Care which would provide different people to take and fetch him from school each day.
National Childbirth Trust (NCT) is a charity offering support and advice for mothers, on topics such as breastfeeding, ante-natal classes, post-natal and mother and toddler groups. Write with SAE for their useful publications list, plus Maternity Sales catalogue (mail order of all sorts from nighties and nursing bras to gadgets to help with baby care).
NCT runs a national Parents with Disabilities information/contact register that can put a mum or mum-to-be in touch with another with the same disability for support and information. And there's a resource list for disabled parents covering pregnancy, birth and early parenthood. One young mother with RA explained how NCT helped her:
"I still find it difficult to cope with vast hordes and for this reason we did not persevere long with 'mums and toddlers' although certainly my son enjoyed the rough and tumble. Instead we joined the NCT which has branches in most areas and runs good supportive services, social events and regular coffee mornings. This introduced my son into groups of children which were not too overpowering in number for either of us." (In Heather Unsworth's Coping with Rheumatoid Arthritis, Chambers, 1986)
Meet-a-Mum Association (MAMA) Post-natal support groups for mothers, specially any feeling tired or isolated after the birth of a baby. There's a network of groups who can arrange for two or three mums to offer practical support to another in their area.
Play Groups for three to five year olds. Contact the Pre-School Play Group Association for details of theirs. Others are run on a voluntary basis. Social services and health visitors have lists of registered child-minders and local mother and toddler groups.
Self-help support groups for parents under stress OPUS (Organisations for Parents Under Stress) runs a confidential telephone helpline (Parentline) for parents, can offer a sympathetic ear and, if you want, put you in touch with local contacts and groups. Parents Anonymous is a support group run by parents for parents having problems with older children. Look in your phone book, or contact the London branch for more information.
Maternity Alliance is a charity which helps pregnant women and parents of young babies with queries about benefits and practical support. Your local Citizen's Advice Bureau (see page 118) will be able to help with benefits queries too.
Home Start Consultancy is a home-visiting scheme run by parent volunteers offering support, friendship and practical help to families with pre-school children. Ask if there's a Home Start Scheme near you (there are over 130 schemes in the UK).
If you want to search further, Fiona Macdonald's The Parents' Directory (Bedford Square Press) lists around 800 voluntary organisations able to give help, advice and information to parents on a wide range of topics.
Don't forget to look at the pregnancy and baby books listed on pages 227-228. Some of the organisations listed above produce useful publications too. Beg, borrow, or buy these key books: they'll in turn lead you to other sources of information and help:
Other books listed here don't deal specifically with arthritis/disability, but may be helpful. The Healthwise booklist has a section on pregnancy, birth and childcare. Many books listed in this chapter can be bought by post from Healthwise. Relate has booklists on 'fertility, pregnancy and birth, adoption' and 'children and teenagers'.
Magazines: Parents and Practical Parenting contain useful news and tips. The NCT publishes a quarterly newsletter, Newsletter for Parents with a Disability.
Some publications to inspire you in planning non-physical activities with your children:
To keep you in touch with books being published for children:
See also the Book Clubs in the last section on this page.
Get information, support and advice from Gingerbread (see page 218) and the National Council for One Parent Families (NCOPF), whose publications (many free) include relationship breakdown, housing, benefits and legal rights, and We Don't All Live with Mum and Dad (£4 inc p&p, 1991), which lists over 100 publications aimed at children and adults in one-parent families. Another book (non-arthritic) that may be helpful
Three mail-order firms for wonderful toys, hobby materials, etc, for children of all ages:
For children's party goodies by post (besides the three firms above):