Nursing Special Children
How is it like to have patients who are autistic or with down syndrome? Do you have the patience and magic touch as a nurse? Can you tickle their mind and hearts in order for them to agree with your interventions? This article is inspired from a lifelong journey of the author and with her special sister.
- 9 Published Dec 10, '13
How is it like to have patients who are autistic or with down syndrome? Do you have the patience and magic touch as a nurse? Can you tickle their mind and hearts in order for them to agree with your interventions?
Children who are mentally-challenged or diagnosed with incapabilities will always have a soft spot in my heart. These type of patients such as those diagnosed with autism or cerebral palsy needs special attention from health care providers.
Having a younger sister with such is an eye-opener to me and to my parents. My sister was diagnosed with autism accompanying with mild retardation when she was six years old. Being the eldest, I comforted my mother who was very much emotional about the diagnosis. She could not accept the fact that we need to look after her to the best of our capabilities, that independence is not applicable to her, and that patience is something that we should endure always.
To further elaborate this, her IQ is not enough for her to study and learn the way normal kids learn. With the best of patience we can bear, my sister was able to grasp and apply basic things such as toilet training, eating on her own and telling us things she desires through pointing. She can only speak a few words and the rest of it are non-sense sounds autistic children usually utter.
My sister grew up. Illness became inevitable from time to time. What's difficult among special children is that they cannot tell if what they're feeling is normal. I observed this to my sister for the past few years. In 2011, she was diagnosed with GERD. Nausea and vomiting kept her weak and thin during the attack of her illness.
However, she doesn't complain. She just go to her bed and lie down. Far different from other people, GERD is a painful condition requiring hospitalization in some cases. My sister's pain tolerance is not something to be proud of but it is a caution among us nurses the next time we assess these special children.
So being a nurse with a sister with special needs, here are a few tips if by chance we encounter them.
- Understand and Be Patient. They are the ones who needs extreme tolerance even at times of tantrums.
- Constant assessment is always needed as they do not usually say what they abnormally feel.
- Ask the relatives whenever problems arise as they know what their children need at times of confusion with communication.
- Most of the special children do not want to be forced to do something so wait for them to agree with it or you may try to soften their hearts by offering something.
It seems that the best patients aren't those who are obedient but rather those whom we are able to help despite the physical and mental disabilities that they possess. My autistic sister has inspired me to understand these kind of patients.In the future, I'm looking forward to help them at the best of my capabilities whenever they are admitted at the hospital.Last edit by Joe V on Dec 10, '13
Staff Nurse with OB/Onco/MS experience for 2 years.
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1Dec 11, '13 by bluesky94I've been taking care of a girl with cerebral palsy for several years now, and working with her is one of the most rewarding experiences that I've had. She is one of the main reasons that I want to become a nurse. I would love to be able to work with more children like her.1Dec 11, '13 by JeanettePNPThis post really hit home for me as well.
I am a pediatric nurse practitioner. I was always drawn to children with special needs. When I finished nursing school I could not find work as an RN and became a volunteer in pediatric homecare and in a pediatric LTC. I would visit families in their homes and give them some respite from caring for their children with complex medical needs. I'd go to the LTC and hold and play with babies who had no one else to care for them. It was natural for me to choose pediatrics as my specialty.
Irony? Fate? Karma? When I has in my final semester of the PNP program I gave birth to my daughter, with a birth diagnosis of Down syndrome. She is now 14 months and the light and joy of our lives. She shows us every day how meaningless labels are, how we cannot put limits on what our children can achieve. Every day she surprises us, every day she learns something new.
There is so much the healthcare community needs to learn about how to relate to people with special needs, and their families. There were only two people who said "I'm so sorry" to me after I told them about my daughter's diagnosis. Both were pediatric nurse practitioners, and both were instructors in my program. We are not sorry that our daughter was born with Down syndrome. It is part of who she is and we accept that. To wish her extra chromosome away would be to wish her away.
Having a daughter with DS made me a better nurse, especially as a pediatric nurse. I was always motivated to be a resource to families of children with special needs, long before I had one of my own. But I am now aware of the many subtle ways I may have come across as condescending... patronizing... putting them on a pedestal... "better you than me..." all the attitudes that we are oblivious to until we have first hand experience of them.1Dec 12, '13 by tokmomThank you. As a mom of a special needs daughter who cannot read or write quite yet at 11 years of age, and has global delays, sensory issues, apraxia of speech, fine and large motor disabilities, and processing disorders, I'm always relieved when nurses know how to handle her without being condescending and impatient. Some have gotten angry at her because she doesn't react fast enough during hearing tests, eye exams, etc. She needs time to process what is being said. Sigh...
Like the other moms, I worry about her future and leaving her behind one day. It makes me cry to think about it. Thankfully, she has older sibs that have promised to take care of her. I only wish her future would be different for her, but I love this little girl to death. Every day she struggles to make sense of her world, and she is so loving and kind and the best thing that ever happened to me.