Parenting my son with multiple disabilities and working as a professional
WHO am I? I am a child of God, a mother, a grandmother, a wife, and a professional who enjoys working with the most vulnerable and marginalised within our society.
Conrad is the youngest of three boys, an adult with multiple disabilities, namely intellectual, physical and speech disabilities. Conrad also struggles with frequent bouts of seizures and communicates at a level younger than a five-year-old. He also has other health impairments, such as asthma and sinusitis, and both his parents are seniors.
Because of medical negligence, our son was not able to meet his developmental milestones. I laboured for more than 24 hours, which was followed by a caesarean section, which revealed that I had a fibroid in front of the head of a beautiful baby boy weighing 6lb 11ozs.
After birth, and visiting his paediatrician over some time, his medical experiences and expenses became numerous. He was referred to several specialists and clinics throughout his earlier years and into adulthood. These included ear, nose and throat doctor, audiologist, neurologist, optician/ophthalmologist, dentist and physiotherapist. He was admitted to the Bustamante Hospital for Children several times, including to the intensive care unit.
Spanish Town Hospital became the hospital for his admissions in emergency cases after his discharge from Bustamante at age 12. We were told as parents that he would not live past 12 years. Conrad is now 33 years old, and is alive and well. As parents, we encountered many sleepless nights. Some nights he will still get up and roam, turn on the light switches… to avoid this, we have to unscrew the bulbs. He will bang the bathroom door or go in the bathroom and do his antics; the bathroom door has to be kept closed… All these actions wear us out sometimes if we are not on top of things. Can you imagine if both of us fall asleep without doing our contracted work for the night?
Conrad and other people with disabilities are here for a reason and all have a purpose in life, as mentioned by Rick Warren in his book, The Purpose Driven Life. There is never a dull moment with our son.
My journey with Conrad began after we were referred from Bustamante, diagnosed with mild global developmental delays, to the Early Stimulation Programme at Hanover Street, Kingston, then, after a while, to 3D Projects in Spanish Town, St Catherine in the parish of our residence. The intervention and rehabilitation process constitutes seven steps. Before this, the suspicion phase for us as parents, which is the first of seven steps of the intervention and rehabilitation process, began, where as parents we thought something was wrong when we realised he had a head lag and was not sitting between three to four months. This was observed because of my previous experience with his siblings. From a mother’s intuition, I knew something was wrong. After months of observing delays in his developmental milestones, the identification followed, and the rest became history.
I cannot overemphasise my gratitude towards Dr Marigold “Molly” Thorburn, founder of the Early Stimulation Project, and 3D Projects in Spanish Town. She became my mentor and pillar of inspiration, but was a source of information for those who had little knowledge of issues faced by parents of children with disabilities and other self-advocates living with disabilities. She was a guardian angel to us. Her influence caused me to become a strong advocate for this community, and remaining true to the journey of teaching and empowering others is now my main goal.
As a family we consider ourselves blessed, constantly having God in our midst. At this time in our journey, we cannot afford a caregiver, and the presence of COVID-19 makes it even harder. Due to the pandemic and taking into consideration underlying health conditions, we have taken extra precautions as it relates to caring for Conrad as parents.
We have to remind ourselves to follow and practise the protocols and be safe. I must say at this point there are no other family members we can depend on to physically step in, so on weekends I am fully responsible for loving and caring for my son. In other words, both of us as parents constantly communicate and work out a schedule. My husband deserves a break or a breather, so do I. Most times at the end of the day I’m physically, mentally, and emotionally drained, but I take it one day at a time.
Whenever there is an occurrence of seizures at this time, we pray harder and we do not leave his bedside until the episode subsides. This mostly occurs at night. Occasionally, he will experience a seizure in the day, which is scary because he may fall and hit his head. He constantly requires supervision.
I have been employed at the University of Technology, Jamaica for over 17 years as the supervisor of a centre that caters to children with disabilities from the Mustard Seed Communities. My sojourn in this position has been more than a job. It involves a personal mission driven by passion and self-motivation. It’s my ministry!
During the pandemic, balancing home and professional life can be very challenging. However, thank God for my husband, who is presently retired and has full responsibility for Conrad while I am at work.
I think I share the sentiments of other parents, with or without a child with a disability, that balancing parenting and engaging in a full-time job is not an easy task. I am sure we cannot do this alone. Honestly, sometimes I do not know how I get through. It’s hard work; there are just times when I break and cry out to God. Psalm 46:1 reads, “God is our refuge and strength, a very present help in trouble.”
Carol Hutchinson is the supervisor of UTech, Ja Mustard Seed Communities; coordinator, Mustard Seed Communities; caregivers’ long-distance learning training lecturer, School of Allied Health and Wellness, College of Health Sciences, UTech. E-mail her at chutchinson@utech.edu.jm.
