My shopping cart
Your cart is currently empty.Continue Shopping
"Before I start my Occupational Therapy story, I want to talk about what occupational therapists (OTs) actually do.
Occupational therapists are health care professionals who help people with an injury, illness, or disability learn or re-learn to do everyday activities.
My Occupational Therapy story started when I was four and a half. At the time, my parents, my two and a half year old sister and I had moved from Sussex on the south coast of England to Wallingford, an old town on the banks of the River Thames about half an hour from Oxford in south east England. I have Spastic Quadriplegia Cerebral Palsy with Hydrocephalus. I have 4 visual impairments which are hemianopia (complete blindness in half of both eyes and a severely reduced visual field for the rest of my eyes), strabismus, astigmatism and nystagmus (constant, involuntary side-to-side eye movements). I have hand tremors and muscle spasms throughout my body and have involuntary movements and seizures. I have good hearing and my intelligence is not affected.
My bad eyesight means I move my head to try and see and the postures can sometimes be not what people would expect. Doctors were concerned about body control in general with me and recommended physical therapy, occupational therapy and therapeutic horseback riding. I was a very nervous child and had already been through a lot medically by then: a very premature birth with many complications and a long NICU stay.
The first place I remember meeting an occupational therapist was the Hugh Ellis Paediatric Assessment Centre at the Churchill Hospital in Oxford. I remember the low white and wood buildings in the hospital grounds, the antiseptic smell in the corridors and the brightly colored walls.
A tall, thin lady with a huge smile and a slight Scottish accent and dark shoulder-length auburn hair approached me confidently before introducing herself as Maggie, my new occupational therapist. I could tell immediately she was welcoming and friendly. I’m not sure if I spoke much the first time I met her but with time she soon realized I was a chatty girl although I was shy and quiet. I wouldn’t initiate conversations and I would wait to be spoken to.
I remember at age seven being told about my identical twin sister, Natalie. I told Maggie about her. Back then, I had a lot of questions about the world and was starting to realize I felt “different” from the rest of my classmates. I went to a mainstream school with Personal Assistant support after having gone to a preschool for children with severe and complex disabilities. The school day was incredibly tiring for me and I didn’t do after school activities.
When I was five years old, Maggie and my doctors recommended therapeutic horseback riding to try and help me with self confidence, balance, posture, strength and body control. I loved this therapy and horses are still my favorite animals. I couldn’t use my body strength to control the horse and always had a carer with me but I could use my voice to tell the horse where to go and I felt free on the horse. The horses were specifically picked for their gentleness and I learned to love them. My Thursday evening classes were the highlight of my week until I was seventeen and a half. This activity improved my self confidence and increased my tolerance when sitting a little, progress which Maggie was pleased about. I am forever grateful to her for suggesting I try therapeutic horseback riding, and I have the memories, certificates and rosettes which I will always treasure.
Occupational therapists work in hospitals or health clinics and also visit people at home or at school.
At school, Maggie focused on trying to get me to hold a pen. The tightness of my muscles meant I couldn’t get the posture right and it would fall out of my hand. She recommended some rubber pen grips but I still had the same problems. She noticed that my lack of strength and stamina, increased tightness and tremors in the muscles in my arms and hands meant I can’t reach far or grip things well.
Maggie worked with me through my school years. By the time I got to university, my PA would help with everything. I had enlarged papers and they were so big that they fell off the table. I had an MP3 player with a microphone to record my classes and my PAs would write for me.
Maggie saw my postural difficulties, that I had severe difficulty moving my shoulders and can’t move them or my toes and atrophy in some muscles, meaning the muscles have become thin and weak. She was conscious of my sitting posture which was slumped with rounded shoulders and how I can’t put my feet flat because they are twisted.
Since I was a baby, therapists worked with me on head control but I still struggle with it. Maggie and my physical therapists and neurologists advised me on head and neck positioning and knew about my shunts and surgeries and how important positioning is to avoid unnecessary pressure on the shunts so they would work properly and help lessen the nausea, acid reflux and dizziness I would, and still, get from being badly positioned.
Maggie also advised me on wheelchairs and seating. As an adult, I searched for advice online and have become my own advocate for that. Occupational therapists always tried to make me as comfortable as possible through the use of a supportive backrest with built-in trunk supports and a cushion for my wheelchair, and positioning belts. I have special seating in my current wheelchair which has molded supports like wings by my ribs but I still slip and am slumped. I have electrical features to help me change position so I can be tilted back, reclined, have my feet and legs, or the seat of my wheelchair, raised. Now, I use a special foam and air cushion, a Hoyer lift and adjustable electric bed together with physical assistance from others to allow me to conserve as much energy as I can.
Because of my Cerebral Palsy, I use up to five times more energy a day than people who don’t have it. Maggie wanted me to be able to do fun things as well as those that were necessary. She knew that my increased energy use from cerebral palsy and hydrocephalus gives me headaches from muscular effort and worked with my family doctors and teachers to ensure I had pain relief for that whenever needed. Maggie knew pain and fatigue affects my ability to concentrate, learn and retain information. She made my teachers aware of this. I was bullied and misunderstood by teachers and classmates alike because of the deformities in my hips and spine which are also painful. My hips are rotated inwards too much which means my legs and feet aren’t straight. My pelvis is rotated at a strange angle and I have scoliosis (a laterally curved spine) and lordosis (too much inward curve on my lumbar spine).
I was conscious of others seeing me as different from them. I also didn’t like how my deformities have always made my body hurt. It’s a stabbing ache that can make me cry. They cause many challenges with positioning and comfort. In spite of this, I accept my body is how it is.
Maggie noticed tightness and movement limitations in my hands, fingers and wrists. She saw the abnormally quick reflexes in my legs and feet and how I startle easily.
My doctors and Maggie noticed that my needs are complex and severe. I have difficulties with speech, controlling the small muscles of my mouth and drooling (decades later, I would learn this is called dysarthria). Even now, the skin around my mouth will get red. I was self-conscious about this and was bullied at school as people said they didn’t understand me and they asked me to repeat words, pronounce better, laughing at me when I couldn’t. I was also bullied about everything from my weakness around my mouth, which affected my speech and made me drool, to my scars. I talked to Maggie about these things and being bullied.
In addition to my dysarthria, Maggie noticed I had dental problems: overcrowded bottom teeth, sensitive gums that bleed easily and mouth ulcers. I explained I can’t brush my own teeth because of arm strength, coordination and precision as well as head and neck positioning problems.
In spite of my dental problems, people say one of the best things about me is my smile. I adore makeup and picking out different lipsticks.
I love clothes. Being interested in my appearance, I struggled to accept my body after my shunt surgeries for hydrocephalus because of my deep scars. My abdominal scar is in a large L shape and part of my skull is missing where I had Intracranial Pressure (ICP) monitor surgery. Some parts of my hair haven’t grown back (but they are under the rest of my hair). My scalp scars are deep. I have had short hair much of my life and feel it suits me. I like how I always have it cut so It helps cover my scars, but if it’s brushed or styled people will see my scars. I am proud they are a part of me.
I felt my body was different after the surgeries but with time I learned to see my scars as reflecting what I had been through. She understood me and had so much empathy.
Maggie recommended equipment for my home. I saw her at the hospital, but she also paid me a lot of home visits. She realized OT equipment was incredibly “trial and error” with me because of the severity and complexity of my disabilities. There were aids I just couldn’t use. She did recommend Dycem, a non-stick material to hold things in place on surfaces, and speech recognition software for my computer. I loved both these things. During one home visit, she recommended the Nottingham Rehab Supplies catalog to my family for me and we always had a copy. She said she could order anything I wanted.
Eating and drinking was another thing she focused on with me. As a baby, I couldn’t suck or swallow. As a girl, when I had symptoms from hydrocephalus such as severe vomiting, dehydration, drowsiness and headaches, I had to be hospitalized and fed through IVs and an NG tube. I couldn’t eat because of nausea and grew quicker than I put on weight. The doctors and nurses were worried. Because of this, Maggie had me try adaptive utensils and I have had various models throughout my life. They all had built up handles, some handles were made of soft foam, others were hard plastic but they were all lightweight.
OTs help with activities of daily living. They also help people with physical disabilities and other health conditions learn new ways of doing things, regain skills or develop new ones. Maggie and all the OTs in my life tried to look for ways to help me do things although I always needed help from others.
Maggie worked with me on a lot of things. She tried to make tasks fun. She used beads, blocks and different shaped objects. She tried using a ball and noticed I have slow reflexes and tend to startle very badly when a ball is thrown or something moves unexpectedly because my eyes and brain can’t figure out what I’m seeing or the speed at which something is happening.
She noticed I can’t recognize a 3D image, trace or draw. I cannot navigate the world around me or move so I don’t bump into things and hurt myself. I have figured out I have to use my senses of touch and hearing, as Maggie and others suggested and this is an advantage to myself and others. For example, I can hear a phone ringing or an alarm clock going off or food cooking before others or if it’s raining although a door or window is closed. When crossing a street I listen for cars stopping and prefer traffic lights with audio signals. I know my lack of sight is compensated for by good hearing and am glad for that. I call this one of my “gifts.” OTs tested me for whether I was able to orient myself in relation to my surroundings. I still have difficulty knowing which is right and which is left.
Years ago I started my memoir, Twin Number Two and I wanted to contact Maggie but I learned she passed away. This made me sad. I’ll never forget her.
In 2009, I met Helen Charles. She wrote a housing report that was thorough and professional. Like Maggie, she listened to my concerns and opinions and gave me good advice. She was witness to my poor posture and the way I would slide around in a bed or wheelchair and she was able to get padded covers for my bed rails so I was better supported. She was supportive on more than one occasion. I was sad when she left her department and hope to contact her in the future.
The occupational therapists who are special to me are those who love their jobs and treat me as the person I am. They have given me equipment and advice so I can live my best life.
I am now 40 and I am looking forward to meeting other occupational therapists and hope they will be as special and unforgettable to me as Maggie and Helen.
Maggie taught me to embrace my disabilities and celebrate who I am. She was proud of how far I’d come in terms of confidence and my level of acceptance of my disabilities and the maturity with which I spoke about them at seventeen years old which was how old I was the last time I saw her.
I don’t hide behind anxiety or embarrassment about my disabilities, After all, I have never known a world without them. They are a part of me and always will be.
My aids help me with my disabilities and I wouldn’t have them without the help of my occupational therapists. To anyone who has an occupational therapist, I would say celebrate them if they help you well. Try and be your own advocate as far as you’re able. If you aren’t, get someone else to be. I have my husband as my advocate although I can say what I want. That doesn’t mean I’m always heard. I have had to search for independent advocates too.
Embrace the individual you are and never feel less than anyone else because you have a disability or health condition that means you need occupational and other therapies. If you’ve never had occupational therapy before, I wish you the best of luck on your journey.
This is my occupational therapy story and it’s for Maggie and Helen, two of the best occupational therapists I have had the pleasure of meeting and who just saw me as Katherine."