Olga the blue rose.
Olga is 7 years old girl with blue eyes and long hair. She loves listening to music, playing games and reading books. Her favourite movies are Frozen, Moana, Minions and Sing. One day she can give you lots of hugs and kisses and then she might tell you to leave her room and close the door when she is asked to clean her room. She can also be stubborn so often needs to be encouraged to do what she is asked to do. She is like other girls from her class except she was born with an extra chromosome. She is living with Down Syndrome This is how I see Olga. She is my daughter with her own personality. Sometimes I hear ‘poor little girl ‘ or ‘ it must be hard for you ‘. Olga is not pure. She is a happy girl with a loving family and a lots of friends. I never feel sorry for my daughter because of Down Syndrome. I only feel sorry for her when I can’t access medical intervention in time when it is needed. It is only hard when you look for help to help your child to have fulfilment in life.
Unfortunately, even though many countries have ratified the Convention of the Rights for People with Disabilities there are still barriers in our society. These include a lack of understanding in relation to intellectual disability in healthcare. I have had to fight for Olga’s needs from the moment she was born. It is a fight for her rights. When Olga was born I was promised by health care workers that I would have all the needed supports. Despite the existence of the Progressing Disabilities policy which places the child and their needs at the centre of service access and provision (HSE, 2012), since she was born I always felt I didn’t have enough support. One example is a simple explanation of what Down syndrome is in easy language so I could understand. Everything was described in big, medical words. When Olga was born she was brought to intensive care. I will never forget the nurse’s words: Did you ever heard about Down syndrome? I cried and prayed. That night nobody talked to me and I was on my own with fears and sadness. I only needed simple reassurance, simple explanations.
When Olga was two she was diagnosed with chronic tonsillitis. For one year she was on antibiotics, admitted to hospital so many times as she couldn’t eat and drink. She was choking so many times as she couldn’t swallow with her enlarged tonsils. I asked so many consultants for help as she needed a tonsillectomy. Olga suffered so much from pain. She wanted to eat and drink but she couldn’t. I only heard that waiting time for tonsillectomy is long and ‘I JUST HAVE TO WAIT’. I even travelled abroad to look for help. Then I met a fantastic doctor and he helped us.
Olga had her grommets done at the same time as her tonsillectomy. A year ago Olga’s behaviour had changed. She started to lock herself in the bathroom, didn’t pay attention, had sleep difficulties, refused to go to school. As a parent, I was told that this is typical behaviour for a child with Down syndrome. Thankfully I’m studying intellectual disability nursing and through my education, I understood that Olga is telling us that something is wrong. In my own opinion, her pain and discomfort were not being heard as a result of diagnostic overshadowing. My daughter couldn’t hear us. She was telling us by her behaviour that something is wrong. I think she felt frustrated as she experienced difficulty in communicating and she couldn’t understand people around her. For a few months, I was trying to see the audiologist and ENT to recheck her hearing. Finally, the hearing was checked and my daughter was diagnosed with hearing impairment and her grommets were reinserted a few weeks ago. Olga’s speech is delayed due to ongoing otitis media with effusion (fluids in ears). Her hearing wasn’t rechecked for four years and this resulted in my daughter having speech delay. According to the American Academy of Pediatrics (2004) symptoms of the middle ear fluids are lack of concentration, poor balance, change in behaviour and difficulties in sleeping.
Since Olga was moved from Enable Ireland to Early Service 6-18 only a few appointments were offered and she is on a waiting list for speech and language therapy and has had two appointments with occupation therapy. The importance of multidisciplinary support tailored to the child’s needs is emphasised in the intellectual disability nursing literature (Gates and Mafuba, 2015; Gates and Barr, 2009). Mc Carron et al. (2018) Shaping the Future of Intellectual Disability Nursing in Ireland highlights the need to develop the availability of both generalist and specialist intellectual disability nurses to support children throughout infancy, childhood, and adolescence.
I hear from other parents of children living with disabilities how hard is to get any service and support. As a full-time carer, they get 230 euro a week. That is not enough if you have to include private speech and language or occupational therapy costing seventy euro a session. The waiting time to see therapists is too long. It is vital to look at each individual with disabilities as a person first. They all have their own personality and health and social care needs that should be addressed in a timely manner to prevent secondary complications.
Recently I read Gerda Klein poem ” The Blue Rose”. It is about Jenny living with Autism. Gerda Klein gives an example of how to look at the children living with a disability. In her view, children with extra needs are like blue roses.
Have you ever seen a blue rose?
There are white roses,
and pink roses
and yellow roses,
and of course lots of red roses.
Every gardener would love to raise a blue rose.
People would come from far away to see it. It would be rare, different and beautiful…
…Jenny is like a blue rose, delicate and lovely.
And because there are so few blue roses,
We don’t know much about them
We only know that they have to be tended more carefully.
Denny’s Poems and Quotes (1997-2007)
Olga is like a blue rose. My role as her mum and a future intellectual disability nurse is to help people in our society to open eyes. Teach them how to be a good gardener.
American Academy of Pediatrics (2004) Middle Ear Fluid and Your Child. Available at: https://www.stonybrookmedicine.edu/sites/default/files/40105177.pdf (Accessed: 25 March 2019).
Denny’s Poems and Quotes (1997-2007). Available at: https://www.dennydavis.net/poemfiles/bbychld/special.htm (Accesses: 27 March 2019).
Gates, B and Barr, O (2009) The Handbook of intellectual disability nursing. Oxford University Press: Oxford.
Gates, B and Mafuba,K ( 2015) Learning Disability Nursing: Modern Day Practice. Taylor and Francis: London.
Health Service Executive (2012) National Policy on Access to Services for Children & Young People with Disability & Developmental Delay. Available at: https://www.hse.ie/eng/services/list/4/disability/progressing-disability/national-access-policy-for-children-with-disability-development-delay.pdf (Accessed:25 March 2019).
McCarron, M., Sheerin, F., Roche, L., Ryan, AM., Griffiths, C., Keenan, P., Doody, O., D’Eath, M., Burke, E., McCallion, P. (2018) Shaping the Future of Intellectual Disability Nursing in Ireland. Health Services Executive, Ireland.