SHARED EXPERIENCE - Chapter 4 - The impact on others

By Charlotte Fielder

- We have two ears and one mouth so that we can listen twice as much as we speak ~ Epictetus

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What did others do around you in those early months?

What helped and what was unhelpful?






As I started to collate the responses for this question, I was reminded of several lines of verse I heard on the radio a few years back.  It was referred to as 'the prayer of the disabled'.  I have never seen it written down but it goes along the lines of:

God bless me through bitter sorrow,
To bear the help I'll get tomorrow!

It makes me smile and often brings to mind a time when I had totally unrequested help foisted upon me.  Picture the scene: busy pub serving pub grub.  I ordered bangers and mash and was sitting there waiting for my lunch to arrive.  Meanwhile the chef decided to cut up my sausages into bite-sized chunks to 'help me'! If I had been a small child I would have understood, but I was an adult and I was out for a pub lunch with my work mates! My colleagues fell about laughing.  I was eventually persuaded to see the funny side, but initially I was annoyed and irritated that the cook had just presumed I needed the help.

However, I didn't laugh much after I had given birth to my daughter and an overly enthusiastic midwife wanted to give me master classes in putting nappies on my baby.  I knew I didn't need that kind of help.  She asked me who was going to come in and help me change nappies when my husband wasn't at home. 

I was seriously upset with such a condescending approach as I just wanted to be left to my own devices and find my own way of doing things.  After all I wasn't the first woman in the world with an upper limb deficiency to change her baby's nappy and I wouldn't be the last.  If Alison Lapper, the famous artist without arms and with lower limb deficiencies, could change a nappy with her teeth, then I could certainly change my baby's bum. 

When I read some of the responses to the question about what helped and what didn't, I was reminded that most of us don't want too much intervention and just want to come to terms with managing in our own time and with those closest to us. 

What really came out from the questionnaires was that for many, the birth and acceptance of having a child with a limb deficiency (and sometimes other conditions) was an intensely private experience for both parents.  It was something they had to figure out for themselves without outside interference.  For parents reading this who have just found out, please be assured that wanting to give yourself space and shut out your wider family and friends is very normal.  It is important to give yourself that space so that you can come to terms with the news and think about what external help you are going to need.  Just because help is offered doesn't mean you have to accept it.

Many parents simply wanted to be left alone.  Even the presence of grandparents was just too much to have to deal with for some respondents.  They had more than enough to cope with managing their own mixed up feelings, never mind having to make their parents feel better about it! Overall what helped from others was gentle acceptance and unconditional love.  What didn't help were platitudes and time worn clichés.

I also realised that some parents had an almost heightened awareness about the events surrounding the birth of their child.  Every comment, 'throw-away' line, facial expression, and personal thought had been carefully stored away in their memory banks.  I'm convinced that some parents who might not remember what they had for tea last night would be able to tell you the midwife's name and recall the layout of the delivery room. 

Consequently, there are grandparents, visitors and nurses who are castigated some years on for saying the wrong thing, and indeed struggling to say the right thing.  Some parents are more forgiving of the inevitable unintended, stupid or 'foot in mouth' comments, and recognize it was difficult for their families, too.

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What I found most fascinating was that parents wrote more about their experiences before and immediately after the birth than they answered to all the other questions put together.  This reaffirmed my understanding that traumatic events stay in sharp focus in our mind's eye.  I kept going over the questionnaires to find out why that was, and came to the conclusion that the worst part of parenting a visibly different child was the initial discovery.  For many it was a loss similar to bereavement.  I am helped here by my husband who is a bereavement counsellor.  On many occasions we have discussed the grief people go through when a loved one dies.

It is said that bereaved people go through experiences that can include:
· initial shock and disbelief
· facing pain, sadness and despair along with other emotions that may include guilt, anger, shame and fear
· acceptance of the way things really are
· reorganisation of their lives and moving on

What has become very clear to me is that, in many ways, the birth of a child with disabilities and especially with visible difference, feels to some parents like bereavement.  They mourn the loss of the limb/limbs for their child (and for themselves).  They may also mourn the loss of a perceived two-handed future life - again for their child but perhaps also for themselves.

Once more I am helped by my husband who explains that not everyone has the same experience of loss.  In some cases, those who have anticipated the death of someone who is terminally ill don't always experience the same levels of shock.  Similarly, mums who had scans and found out about the missing limb did a lot of their crying and grieving for that lost limb before the birth. 

Those who only found out at birth seem to have experienced higher stress levels and in some cases took longer to accept their situation.  Some returned to the scan photos in search of clues in a similar way to bereaved people returning to the last place where their loved one was alive. 

Those who knew that their baby had a limb deficiency were more receptive to help after the birth, and by definition found the actions of others more helpful than those who didn't find out until the birth.  Parents who only found out when their babies were born and who were, by and large, too shocked and upset to consider the relative positions of others, were consequently more likely to find their actions and interventions unhelpful.

Looking through the responses, parents were actually very clear about what helped, and sometimes honesty from family members was welcomed.

The hospital was terrific.  They gave us space to cry and helped us to see she was just a normal baby.  Our family were also very supportive - they mainly just listened to me and my worries and concentrated on the positive stuff.  I have an uncle who became suddenly completely deaf at the age of 20, and he cried and said he knew how hard it was to be disabled, and that she would have a tougher life than most - but I appreciated his honesty.

One mum was grateful for the help she received from a maternity nurse.

In the early weeks/months my maternity nurse was amazing as she supported me when I needed it and left me alone when I needed some space.  Her advice was brilliant and helped me to face the issue, involving both arms at all times when clothing, by dressing the normal arm and then getting the little arm through and talking to the child so that he was aware despite him not understanding.  She helped me to strengthen his limb by lifting it up and down to encourage it to do normal things, which helped the new muscles to strengthen after birth.

Reach also got lots of mentions.  Quite a few parents were able to communicate their hopes and aspirations for their child by using examples of what older Reach children were able to do.

What helped was to provide grandparents with as much information as possible about Reach and what could be achieved.

Friends and family also provided support and reassurance. 

People we knew, friends and relations, were kindness multiplied.

It was also appreciated when friends and family gave parents space.

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Helpful aspects were having friends and family who were supportive during this difficult time and were there when we wanted to phone them, and they were kind with giving us space and time to come to terms with it.  I didn't publicise his limb problem in the early days as I couldn't face it, but after time I adapted more quickly than my husband as I was dealing with my son daily.  I found when speaking to friends about it that it was best to tell them in advance of visiting so that nobody was shocked and so that we didn't feel uncomfortable.

Some parents found that thinking about the practicalities of life helped, too.

Cutting his garments has allowed my son's shorter arm to protrude beyond the sleeve allowing him maximum use of both hands.  We have also found that this makes it less apparent to strangers that his arms are of different lengths.

And trying to find ways to make life more comfortable for baby was also mentioned.

The only problem we had was because Jonathan had 'bobbles for fingers', which fell off one by one.  Jonathan sucked his stump which made the bobbles sore and painful.  I had to force him to suck a dummy so it allowed the bobbles to fall off for themselves.

A sense of humour was something else that proved invaluable during the early months and years.  The ability to laugh at yourself and the situation you're in probably helps more than any amount of external reassurance.

A sense of humour and acceptance.  Nothing would change it so let's move on and deal with it attitude.  I have to say her being number four probably helped as there wasn't time for too much fuss.  We had a family joke, too - we called her our Raggy Doll - a character from a TV series about rejects in a toy factory.  Sounds cruel but it helped her treat life with humour and realise that the odd tease here and there isn't a big deal.

There were quite a few short or one word answers to what didn't help, suggesting respondents were just as clear on the negatives as they were on the positives.  Common unhelpful behaviour included:
· pity
· ill-informed comments about the wonders of modern science
· excessive optimism about what a wonderful future lay ahead of the child
· excessive pessimism about all the problems the child would face.

Excessive optimism really did grate on some parents as it was almost like being instructed to believe that the absence of a limb meant their child would be bestowed with a whole number of other virtues and talents.  And well they might, because nature does seem to have a way of compensating, but it's not what parents wanted to hear at the time. 

Parents just wanted their relatives to acknowledge their sense of loss and pain and not be overly optimistic or unduly pessimistic.  They wanted those around them to be sad with them, not launch into the 'everything will work out in the end' routine such as, 'They might not become a concert pianist but they are sure to be a mathematical genius'!

I can only comment that Reach members must be a very patient and forgiving lot.  Quite frankly I find it totally amazing that there isn't a correlation between missing limbs and matricide! There is no happy medium on this one.  The questionnaires revealed that excessive optimism is just as irritating as excessive pessimism.  I have included a number of optimistic quotes which speak for themselves. 
A saying that was well-intentioned and meant to bring comfort was, 'At least it's not her brain'.  For us this went without saying and we would often feel extremely guilty for showing our devastation at the loss of our normality and our beautiful little girl so malformed.  So whenever this was said to us we just agreed, but would silently scream that they didn't understand.
Don't worry, they can work miracles these days.
Well, of course, they have bionic arms nowadays.
What didn't help was the constant banter (made to make me feel better) of, 'Well, there's nothing she won't be able to do'.
It seems that family and friends really do walk a tightrope in trying to say the right things. 

And if saying the wrong thing is upsetting for parents, then trying to cope with the distress of family members is really draining.  The mum quoted below found it hard dealing with the upset of close family. 

When Jessica was born and once the initial shock was over - we spent more time managing 'others' expectations' than we did our own.  For example, grandparents were a big issue.  All, especially the two grandmothers, were overwhelmingly worried, and one made herself ill with worry.  This in fact made me angry rather than sympathetic, if I'm honest, as I had enough to deal with.  I shut them out for a while - they just irritated me.

Crying relatives were viewed as unhelpful.

Unhelpful aspects were when close family broke down in tears either on the phone or when they visited after delivery of my son.  This I found unhelpful as I still was so emotionally wrapped up in the situation which I was unable to change.  I also didn't appreciate being put under pressure over what I should or should not do for my son.  I needed time to grasp this on my own as it was my son that I had to think for and had to support.  Nobody else had the right to intervene.  They can suggest but the ultimate decision lies upon your shoulders.

There is a school of thought that suggests that unrequested advice is of no value.  In fact my least favourite word is 'should'.  If I hear a sentence that starts off 'you should', I immediately look for reasons why I shouldn't.  It did come through loud and clear that parents did not want to be told what they should and shouldn't do.  And parents particularly rejected the 'you should' advice in the early days. 

Suggestions were good but not appreciated at the time, as shock made it all a haze and I was emotionally wrapped up in the situation which I was unable to change.  I also didn't appreciate being put under pressure over what I should or should not do for my son.

However, parents did recognize that people were trying to help and that grandparents were upset for their own children as well as the new grandchild.
I think grandparents feel double the worry as they are worrying for their child as well as their grandchild, but I found her way of dealing with it quite annoying.

I ended up feeling a bit low after compiling the above list of unhelpful comments and deeds.  But then I found the following response, where the mum says what felt wrong at the time has now proved to be right.  I include her quote to add balance. 

Everyone said how lucky we were, which made us want to scream - we now realise that they're right.  Realising she's not the only one-handed person helped enormously.  Reach helped and just being up-front and normal.  Trying a few jobs one-handed also made me realise she'll be fine.

Relationship difficulties and breakdown
This chapter is based on responses to the questions, 'What did others do around you in those early months?' and, 'What helped and what was unhelpful?' But what if the person who did or said the worst things, or was the least helpful, was your husband or wife? How did parents cope with that?

I realise that perhaps the least spoken about, but perhaps one of the saddest, outcomes from the birth of a visibly different child (or from a traumatic amputation) is when an established marriage or relationship breaks down because one parent cannot come to terms with their child's disability.  In such cases the impact on each parent and the child can be immense. 

It must be noted that relationships break down for very many reasons and there are often contributory factors, but parenting a disabled child can be one of those factors for some people.  However, it can also be a relationship-affirming event that pulls a couple together and helps them face the realities of life.  Each relationship is unique, and the way each person responds to the birth and upbringing of their disabled child and how this affects their relationship is unique, too.

When reporting discord and difficulties in their relationships, respondents chose their words very carefully.  Although I didn't receive any questionnaires in which the respondent directly related a subsequent separation or divorce to their child's arm or hand deficiency, they made it clear where they were no longer together.  It was evident that in some instances their child's disability put marriages and relationships under additional pressure, and parents noted frustration and irritation with each other.

Some respondents specifically mentioned the strain of repeated hospital visits on their marriage, and especially where one parent made the child their main focus of attention - sometimes to the exclusion of the other parent. 

Other parents struggled with the fact that they had major differences of opinion as to whether their child should have elective surgery such as toe to hand transfer.  Such procedures clearly divided parents when one was opting for surgery and the other wanted more time to think it through or didn't want it at all. 

So I noted the tension and occasional conflict between parents and I also spoke to a newly separated mum at a Reach AGM.  She explained how her relationship had become strained and that they had split up, but like the parents who completed questionnaires, she didn't quote her child's disability as being a significant contributory factor. 

Then one night I took a phone call from a mum I'll call Alison.  She hadn't completed a questionnaire because she found her experience so painful that she couldn't bring herself to write it all down.  But she agreed to a telephone interview to explain how her husband had ended up leaving her because he couldn't accept that his child had upper limb deficiencies.

Alison was 20 years old when Finn was delivered by Caesarean section.  Finn was born with three digits on his right hand, two of which were fused together, and he also had lesser abnormalities to his left hand.  Alison's husband, Gerry (not his real name), was so shocked that he left the hospital straightaway.  He went to both sets of parents and then to his sister who persuaded him to return to the hospital.  Alison recalled feeling incredibly hurt by his reaction and what she viewed as a very early rejection.  She noted that right from the beginning he couldn't or wouldn't deal with it, and she described him as 'burying his head in the sand'.

She brought Finn home, but said she has no happy memories of the first few months and felt that she 'just about got through it', because she had no support from Gerry.  When I asked her what memories she did have, she described the early months as a 'blur of screaming arguments'.

She spoke about how she wanted and needed help and advice from external sources, but the more she discussed her need to get 'professionals involved', the more reluctant and unsupportive her partner became.  On one occasion Alison wanted to talk to the health visitor about a particular concern and explained why to Gerry.  Alison said he 'went mad' at the suggestion and told her not to get anyone else involved because they would think she couldn't cope.  He told her 'he didn't want the health visitor sticking her nose in'. 

The atmosphere at home was characterised by conflict and, given Gerry's inability to accept the situation, it is perhaps no surprise that he did not bond with his son.  Alison felt that he saw the disability as bigger than it really was.  He was negative towards her attempts to do things for Finn to support his development.  For example, she told Gerry that she wanted Finn to learn to swim; Gerry told her that he didn't know why she was bothering as Finn would never be able to manage it.  A few years later she shed tears of joy when Finn swam from one side of the pool to the other. 

As Finn grew and time passed, Alison started to feel Gerry was 'not on her side'.  She realised that the more help she sought and received from outside, the more the relationship disintegrated, until they eventually separated when Finn was six years old.  After that Gerry chose not to have a relationship with his son. 

Soon after the separation, Alison started to build a new life for herself and Finn.  Now that Gerry's restrictive influence had gone, she pursued surgery and support for the other special needs that Finn had in addition to his upper limb deficiency. 

At the time I first spoke to Alison, Finn was 11 years old and life for them both had moved on, but the early rejection of her son by the person she thought would love and care for him as much as she did, had hurt and affected her deeply.

I was saddened by Alison's account and was only heartened when she described how joining Reach had been a turning point for her.  She said that, in many ways, Reach had provided the support missing from her marriage, which speaks well for the care, contact and advice Reach offers parents. 

I spoke to Alison quite recently for an update and to check that my description of our original interview was accurate.  Finn is now 12 and hasn't seen his dad in five years.  Alison was reflective and said she didn't resent Gerry but she will never understand him.  She has been in a new relationship for a year with a man who fully accepts Finn for the person he is. 

My conversation with Alison prompted me to look again at the questionnaires to explore this further.  Respondents certainly describe how they 'got through' difficult times, despite differences of opinions and other challenges to their relationships.  But it is important to note that there is sometimes a tendency to shape the past to fit the present, and I sensed a general reluctance to re-visit any negative aspects of their personal relationships that could relate to the parenting of their visibly different child. 

Some parents were able to acknowledge the painful memories of when they were not in accord with each other, and had been unable to respond to their child's arm or hand deficiency in compatible ways. 

There were cases where the impact of relationship problems had led to parents deciding to have subsequent children, sometimes in quite short time frames.  Others approached their child's condition as if it was a unifying project, and developed an 'it's us against the world' approach that glued their relationship together. 

Some parents seemed to be able to communicate well about their situation and get to a more settled stage of mutual understanding and shared goals, but of course some didn't manage that and their relationships struggled as a result. 

If there is a message for new parents, it seems to be that it's normal to encounter difficulties in your relationship because you are suddenly confronted with a situation you didn't plan for, or even consider a possibility.  To be upset and experience a whole range of emotional responses is normal and understandable.  So it's perhaps therefore not surprising that couples get upset and emotional with each other, too.

Those couples that seemed to cope best were able to accept these wide ranging responses even when they were each in different emotional places.  They accepted that sometimes they needed each other's support and closeness, yet at other moments they needed independence and time alone.  There was an understanding that they could be out of step with each other.  They had tolerance and acceptance of each other's different ways of coping but also had shared ways of coping, too.

A key factor seemed to be the ability to communicate openly and with respect for each other - to at least attempt to understand what it was like for the other person and consider life from their perspective.