‘It Will Always Be Christmas in my House’ by Karen Gallen
My name is Karen Gallen and I am a mother to two beautiful teenagers, one boy and one girl. My contribution to this book is around life with my daughter who has additional needs. As this term is used quite freely for a range of needs, I will explain that my daughter has both additional physical and intellectual needs. She requires a lot of care above and beyond a peer child of her age and has been diagnosed with severe scoliosis n the lumbar spine, epilepsy, global developmental delay and a clinical diagnosis of a severe to moderate learning disability.
She is a thirteen-year-old with the average intellectual ability of a 3-4 year old. Physically, she is a fulltime wheelchair user who needs full assistance with all daily activities i.e. she needs to be dressed, showered administered multiple medications, lifted in and out of bed, have her food prepared for her to mention just some of the additional requirements.
Socially, she is like a butterfly and loves social settings and has an infectious smile and laugh that masks a lifetime of hospital, appointments and surgeries. Indeed, at this point, she has endured in excess of 30 surgeries on her back.
In my experience, a lot of parents say that they would do anything for their child, but in my case I have to do everything for her.
Normalising the Conversation around Additional Needs
I would hope that my contribution will normalise talking about additional needs and the impact it can have on the extended family, especially siblings. My children are very close but some days I want to be able to open the car door and ‘shoo’ both of them out of the car and see them run to their friends in the schoolyard. Unfortunately, I know that my daughter will never be able to do that.
I have additional responsibilities and worries around her development and medical conditions but I have also the relief of not worrying about other issues parents might have such as teen discos and late night parties. Life is about balance and I have decided to look at the positives in a situation I cannot change. There will always be childlike innocence in my home/life and Christmas and Santa will always be the best time of year in my house.
I am sure most people who have children can relate to the conversation that occurs when you meet other parents. It goes something like this: “How many children do you have? Boys or girls? What do they do or what sport are they into?” A seemingly innocent topic of conversation, that is, until you can’t answer some of the questions without feeling the need to explain your child has additional needs. And, then, the conversation changes and will be met with one of two responses:
- As though you have just announced a death in the family which results in the other person tilting their head to the side and saying “That must be so hard on you” and “You were given a child with additional needs, because you would be able to cope.” I wonder who makes that decision? Is there somebody in the maternity ward vetting would-be parents to ascertain if they can “cope” with a child with additional needs?
- The overcompensating conversation whereby you are flooded with stories that start with “I know someone who has a child like yours….” Or, “if I was you, I’d get a second opinion because they might grow out of it.”
Having a child (with or without additional needs) changes your life forever and unconditional love and responsibility are instantaneously introduced to your world. Along with that comes organised chaos and forever being alert for any potential dangers to which your child may be exposed to. Over the years, many people have said to me, that having a child with additional needs must make life seem out of control. But, in fact, one of the biggest responsibilities and realisations for me as such a parent is the amount of control I have. My child has additional physical and psychological needs therefore I ‘control’ (and I don’t like the terminology) when she gets out of bed, goes to bed, gets dressed, when she eats, what she eats, where she goes etc. It can be overwhelming because if I have an off day or if I am sick, I still, somehow, need to be in control.
Consent is also another word that is prevalent in my life. Will you sign the consent form for your child’s surgery? Will you sign the consent form for anaesthetics? Will you sign the consent form for Special Needs Assistant hours allocation for the classroom setting? Will you sign the consent form to share a report between different therapists? And with that, comes the fear that if I sign something that results in a negative outcome, then I am forever to blame. Heavy wears the crown.
Reactionary or Revolutionary
The above have been applicable to me since the first indication in 2008, that my child was not meeting developmental milestones at her regular developmental checks. Initially I reacted, which I think is what most parents would do. I cried and tried to ‘explain away’ her delays etc. by saying she was born 2.5 weeks early and asking the medical team to give allowances for her ‘early birth’. I also said she was small and would catch up with babies of her age. I started to avoid meeting other babies born close to her birth date. I almost crashed into an elderly couple in the grounds of the hospital following an appointment – this was due to crying uncontrollably after yet another appointment in Paediatrics whereby there was a lot of shaking heads in sympathy by the Paediatric Consultant and Physiotherapist and a list of therapists /consultants mentioned to which she would be referred to such as neurology, orthopaedics, paediatric physiotherapist for a start.
Finally, after a few days and nights of almost constant crying, when she was almost a year old, I ‘gave up’ being upset. I made a conscious decision I would embrace a resiliency perspective. Realistically, I wanted to cease crying as it was not achieving anything, with the exception of making me feel physically sick and ruining my mascara. What I did do or attempt to do was to try to remain calm and take on the challenges that I could see were before my daughter rather than challenging the medical opinions I was receiving. I took every piece of information I could gleam from the medical teams and read all available information about what they were trying to diagnose. I could recite every word said to me at each appointment, along with an exact recital of how her test results were explained, to the point that at a meeting with the geneticist in Temple Street Children’s Hospital she asked me what branch of medicine I was working in. Never underestimate the drive in you to protect and mind your child/the child you are caring for.
It took a while to realise that life as I had imagined it might be, had dramatically changed so I tried to be logical and do what was required such as attending every appointment offered to her. I even asked for additional referrals to Ophthalmology and Audiology to ensure that all bases were covered. I continued to plod along for approximately two years until it came to a time for her to attend preschool. This is when the revolutionary in me kicked in.
It was suggested to me by her Community Nurse who visited her at home two days per week, that I complete an application form to send my daughter to a specialised school with nurses on site. But by completing this form, it was an acceptance by me of her limitations. I was informed there were six places available and normally a low level of applications received as parents were often anxious to let their child be under the care of another outside the home/immediate family. A few weeks later, a letter arrived stating that her application was unsuccessful. I was annoyed after the effort and emotion I had put into the process. so I decided to query why she was not accepted. Basically, places were offered to children who had little physical and emotional support at home, so effectively because she had a ‘good’ and supportive home environment, she was refused entry.
Several other children were left in a similar position, so I decided to take action and wrote a lengthy e-mail to the mangers of the service with proposals for expanding the classroom size and relocating staff. Fortunately, they read the e-mail and met with me to discuss it. The outcome being that she was offered a place in the classroom from 9am to 2pm Monday to Friday along with two other children and the remaining children who were not offered a classroom place were given supervised play time for a short period of time each day. From that day onwards, I decided to take action rather than have a reaction (wherever and whenever possible). This, to me, is resiliency.
As a mother, father, guardian, your focus is wanting the best for your child, whatever that may be. From the day my daughter was born, I knew that my focus was going to be getting her access to the best healthcare. A mother’s instinct that all was not well proved to be right. It took me three months to persuade my GP to refer her to the hospital and from three months to one year it was a constant series of appointments and approximately 25 physiotherapy sessions in Galway over a period of six months until the dreaded announcement was made that she would have her care transferred to Temple Street Children’s Hospital in Dublin. It seemed like the end of the world at the time as it would mean any appointment would have to factor in a lengthy car journey, however, it turned out to be the best decision for her medically. This was a hospital specialising in the care of children and with some of the top consultants in Europe. Twelve years later and she still attends the hospital regularly.
Thirtyplus orthopaedic surgeries later and I feel like we have become friends with the Professor there. There have many little ‘blips’ along the way and the Professor is so calm and confident that he says ‘everything is fixable’. I have to admire his confidence but after all you do want a calm, confident surgeon. Fixable means another trip to theatre – if there were loyalty points to be collected, we would be top of his loyal customer list!!!
I learned that you should trust your own instincts. As a parent/guardian, you are the advocate for your young child, so, if you feel that they are not meeting their milestones, be that from experience of older siblings or from observing other children of a same age, you should trust your instincts. Then seek the expertise of a medical professional or whatever professional help is required. Do not always accept what you are told by anyone, be it layperson or professional. Seek additional knowledge, to ensure that the medical or health professional is confident in their diagnosis or suggested treatment plan. It is not disrespectful to disagree,
rather it is healthy to have an open discussion about the positive outcomes and potential negative outcomes of a plan/procedure. Every surgery requires a consent form to be signed by me, followed by an explanation of the procedure and a reminder that I am signing for ‘plus additional procedures’ if required when she is in theatre. As her current surgeries are adjacent to the spine (but not directly on it), it is explained that there is still a possibility of damage to the spine. This is followed by a discussion with the anaesthetics team who explain the risks of anaesthesia and that she is difficult to intubate etc. All of her surgeries to date have been performed by the Orthopaedic Team at Temple Street Children’s Hospital, however I have been advised that if she ever requires any non-orthopaedic surgery that I should bring her to Dublin as she is a difficult patient to intubate. Listen to everything. Question everything. Be open to everything. There is not always a potential solution to a unique diagnosis or lack of diagnosis.
Nuggets for Millennials
Never underestimate the power of family and friends in a difficult situation. It is so empowering to have someone listen to you without judgment, without giving opinion and also tolerating the waterfall of tears that accompanies the conversation. Accept help when offered, be it a walk with a friend or a coffee or an invitation to dinner. It can be all too easy to shut yourself off from other people as the situation can seem lonely and, at times, does feel very isolating.
If your child gets a definitive diagnosis, look for a support group. These can be found online, through your consultant, public health nurse etc. I would absolutely involve your child in everyday activities as much as possible; talk to them, bring them for walks, car rides, for ice cream – whatever brings happiness to them and whatever makes the circumstances a little easier for both of you.
Do not hide your child away at home and always be open to answering questions about their condition if asked. From my experience, other children will ask ‘what is wrong with…..?’And their parents often scold them for asking the question. I appreciate the openness of the questions from children. Whilst at a playground, a child asked me why my daughter was in a wheelchair so I explained that she was unable to walk and needed the wheelchair to get around. She looked puzzled and asked “
Why can’t she walk?” so I explained that her muscles are weaker than those of other children and they ‘Don’t allow her to walk’. The young girl smiled and said ‘Ok, I understand. I hope your muscles get stronger when you are older.’ Some simple questions, followed by some simple answers.
If only we could look at each situation in such simple terms as children do. This would foster a greater sense of resilience in us all.
*From Mental Health For Millennials Vol 5 ‘On resilience’. Published by Book Hub Publishing (2021) pp 135-142.