Deb’s story – why I didn’t make my son’s limb difference a big deal

KnittingDeb’s first experience of limb difference came when her son was born 40 years ago. Deb’s son was born with part of his left arm missing below the elbow due to Amniotic Band Syndrome.

Deb’s story is not dissimilar to many Thrive readers and she has kindly shared her experiences of being a mother, during a time when access to limb difference information and support was not readily available. Deb’s approach to her son’s limb difference was one of treating it as a “non-issue, but backed up with support” which has led to the development of a man who is “resilient, confident and successful”.

Deb is the mother of three grown children, and the proud grandmother of two children with a third expected later this year.  Deb also loves knitting, and relishes in the opportunity to craft beautiful personalised blankets for her grandchildren.

Deb has worked with parents, children and healthcare providers throughout her professional careers.  Initially Deb trained and worked for many years as a primary school teacher, but had a career change into the field of psychology 20 years ago.  “After many years of teaching I decided to go back to University and study for an undergraduate degree and then a Masters in Psychology, something that I did over nine years and while the kids were teenagers,” explained Deb.  This led to working in the field, and Deb is now a Clinical Practice Counsellor who trains others.

Deb lives just outside of Brisbane on a large property where all of her children, except her son who now lives and works overseas as a software programmer, have houses.  “Ït’s wonderful to live so close to my family, be part of their lives and spend time with my grandchildren,” enthused Deb.

Deb’s son was born in the 1970s, a time when ultrasounds were not conducted during pregnancies.  This meant that Deb only became aware of her son’s limb difference immediately after his birth.

“He was my first child, but somehow I knew at six weeks that something wasn’t quite right,” explained Deb. While Deb wanted to have a home birth, because of this ‘feeling’, she opted to give birth in hospital.  When Deb’s son was born and he was handed to her she instantly noticed that part of his left arm and hand were missing, and realised that this must have been why she felt that this pregnancy was “different” to what she expected of pregnancy.  Deb immediately said to the doctor “he doesn’t have a hand” to which he replied “but he has the face of an angel”.  Deb feels that there couldn’t have been a more gentle and supportive approach than what her doctor provided at that time.

Because Deb had felt that something was “not quite right” during her pregnancy, the fact that her son was born with a limb difference gave her a sense of relief that he hadn’t been born with a more serious condition.  Deb thought “well if he only has a missing hand, then that is something we can deal with”.  Deb was so calm over the coming days that the medical staff felt that she was not coping and therefore should be seen by a psychiatrist, but as Deb didn’t feel that necessary she opted not to receive psychiatric support and headed home with her beautiful new baby son.

Deb doesn’t deny that she felt some grief, sadness and worries afterwards.  “Will he be able to ride a bike, will he be able to swim and how will he tie shoelaces were some of the concerns I had in the early months,” recalled Deb.  However, with positive support from family and friends, many of whom were also pregnant or who had recently had their first babies at the time, enabled Deb to “just get on with it”.

“The most important thing for me was to ensure that my son had a really positive home environment, filled with people who would support him and take cues from us to treat his limb difference as a ‘non-issue’,” explained Deb.

Indeed, it was such a non-issue with Deb that when her daughter was born she felt that the fact her baby daughter had both hands was strange as she was so used to “rolling up my son’s clothes to accommodate his missing hand”.

Deb doesn’t remember ever sitting down with her son and specifically discussing his limb difference with him.  “It just wasn’t a discussion point, and something that we all just accepted as normal,” stated Deb.  So much so, her daughter returned home from secondary school after hearing a presentation from a person who used a wheelchair and her daughter was angry with Deb for “doing her a dis-service by not introducing her to amazing people with disabilities”.  Deb had to remind her that “technically your brother has a disability” to which her daughter said “really, well he doesn’t count then”.

Deb also found that when someone would ask “what happened to your son’s hand” her immediate response was to check as she thought it meant he had just hurt or injured himself.  It often took a moment for Deb to realise they were enquiring as to why he only had one hand.

When asked by adults why her son’s hand was missing, Deb would usually provide an explanation in medical terms as this was a means of expanding knowledge about limb difference in an appropriate manner. Explanations from her son were completely different and generally humorous; ranging from “a crocodile bit it off” to “I lost a sword fight”.  Although he was also well versed in how his hand stopped growing in utero and could reference that where appropriate.

Deb felt that her son was more conscious of his limb difference when he was young, but by the time he was a teenager it was never an issue for him.  Deb recalled only a few occasions where someone made inappropriate comments regarding her son’s limb difference, and generally any enquiries were inquisitive ones.  Deb was keen to build confidence and resilience in her son so she had a policy of giving him three minutes to deal with the issue or respond to the question on his own before she would step in and assist him.  “I very much believe that if parents always jump in and fight their child’s battles or answer on their behalf it can lead to a child feeling that they can’t cope or that their parents don’t have confidence in them,” explained Deb.

Deb’s son was an incredibly active child participating in all manner of activities with his friends and family.  He could swim a lap of the pool by the time he was four and received his scuba diving accreditation by the age of 12.  He also enjoyed BMX riding and tricks, skateboarding, archery and general fun with his friends during his childhood.  However some rules had to be set because her son’s limb could be used as a potentially dangerous asset.

“I had a strict rule that he was not allowed to use his left arm if wrestling with friends or family, as the bony end of his limb could be quite a dangerous weapon and potentially hurt his siblings or friends,” recounted Deb.  In addition, on becoming aware of it, Deb had to put a stop to a prank that her son and his friends used to play on others.  “My son and his friends used to hide in the bushes with a bottle of tomato sauce and wait for someone to walk past, upon which they would jump out of the bushes with sauce dripping over his left arm screaming that he had just had an accident and his hand had been ripped off.  As soon as I realised they were doing that I put a stop to it as I was really worried that they would frighten someone or, even worse, cause a heart attack”, recalled Deb.

Despite the fact that his limb difference posed no challenges, Deb’s son would also try and use it to his advantage, “with a wry smile”, to get out of doing his chores around the house. Sometimes when Deb would ask him to vacuum or clean he would say “but Mum, I can’t possibly do that as I only have one hand”, to which she would laugh and say “nice try, but just get on with it”.

Deb’s son was fitted with a prosthesis, which he called ‘Nippers’, but he only wore it occasionally.  “Nippers generally lived in my son’s toy box and he rarely wore it, finding it more inhibiting than useful, and he has never worn a prosthesis as a grown man,” explained Deb. “To this day it absolutely astounds me that he can fill a hot water bottle using only one hand, without injuring himself or losing a drop,” extolled Deb.

When growing up there was little in the way of occupational therapy offered to Deb’s son.  “In most cases when my son needed to participate in a new task we just supported him to find a way to tackle and accomplish it – he always found a way and it helped him to build resilience and have positive self-esteem,” recalled Deb.

Deb said that there was no need for special help or treatment whilst her son was at school, and he was just treated like any other student with the freedom to learn manual things his own way.  Indeed, the only time Deb had to step in during the school years was when the teacher expected him to learn two-handed typing, something which Deb feels “highlights how much of a non-issue his limb difference was at school, and just the way we wanted it”.

While there was very little support offered to Deb after the birth of her son, she is pleased to see that more services are made available to families of children with limb differences today.  “Limbs 4 Kids resources and the facebook group are a great way for families to connect, access information, and not feel alone,” said Deb.

Deb’s lived experience as the parent of a child with a limb difference, coupled with her psychology training and experiences, have led her to hold a few personal philosophies and beliefs.

Firstly, don’t make a big deal out of a child’s limb difference. In doing so it will then become a big deal and people will see the limb difference before they see the child.

Secondly, don’t consider limb difference to be a tragedy. It’s not one and the joy is in having a beautiful child in your world.

Thirdly, don’t excessively fuss over or provide special privileges.  Doing so will reinforce that the child is different and needs special attention because of it.

Limbs 4 Life is grateful to Deb for sharing her story and hopes that her experiences and thoughts might help other families and children on the limb difference journey.