Mama and Dad

No child likes needles, and coaxing kids to remain calm while receiving Botox injections to relax tight muscles caused by cerebral palsy was stressful for parents in Bloorview’s spasticity clinic.

But an innovative program that combines music, visual arts and medicine is reducing children's anxiety, helping them find creative ways to cope, and cutting procedure times in half.

Armed with a guitar and a variety of drums, rattles and art supplies, Bloorview music therapist Andrea Lamont (above) and artistic co-ordinator Sarah Dobbs meet with families before the procedure to “assess what type of music will work well to distract this child and what pieces are soothing – whether there's a familiar lullaby mom and dad sing at home,” Andrea says.

Dr. Darcy Fehlings, the developmental pediatrician who leads the clinic, says the music intervention reduces anxiety in most children before the procedure and decreases injection pain in about 50 per cent.

Before the procedure, “they have fun, find instruments they like, make choices, make mom and dad play, conduct the music, and feel more in control,” Andrea says.

Children then take the instruments as companions when they get up onto the clinic bed and lie down to receive injections. “We let them know that it's okay to bang the drum hard when they hurt,” Sarah says. “Normally when a child is in a medical environment and makes a lot of noise, they're told it isn't good behaviour.”

Andrea, who sings and plays the guitar during the procedure, matches the child's emotions in her music. “I watch Dr. Fehlings and as the needle goes in, I increase the tension by going from regular sounding music to something like the Spanish or Middle Eastern idiom, or adding volume or texture and more tension in my voice. From a therapy point of view, when you're willing to match the child where they are, they feel the music is a partner through the procedure. It's telling the client 'I hear you and I recognize your pain, and I'll scream along with you.' When the needle is removed I bring down the tension and sing soothing, calming pieces and the parents give the child a hug.”

While Andrea sings, Sarah supports children by offering them ways to express themselves with a drum or rattle. “A child may feel trapped by their vision of how the procedure will be," Andrea says. “They may tell themselves: ‘It was terrible last time and I'm going to be in pain and there's nothing I can do about it.’ We help open the blinders by offering creative activities that promote problem-solving: ‘I can't do anything about the pain, but Sarah is offering me the shaker. I can do something. I can hold onto something and I can make the bells go.’”

Megan Perron, a nurse in the clinic, says the procedure time of 10 minutes has been cut in half since the introduction of “the music ladies. When the anxiety level is down and the child is cooperating and less scared, we can get the injections done in five minutes. They can hit the drum or bang the symbol to get their frustration out, and they know it’s acceptable to be upset by the whole process. They may still scream, but with the music, they lie still. The parents see the difference. When the child is calmer, everyone is calmer.”

A favourite instrument is a large ocean drum with a pattern of fish on the outside fabric and a clear plastic top. Inside are ball-bearings that move and swish as if in water when the drum is moved. “You can increase or decrease the intensity, so it sounds like a soft lapping of water or a big rush of waves,” Sarah says.

She notes that the arts are accepted as “an integral medical tool” at Bloorview and are increasingly used alongside traditional medicine and therapies. “In the 1950s the World Health Organization said that health had to do with the wellbeing of body, mind and spirit. The clinicians on the medical side can take care of the body, the child's physical needs. But the mind and spirits, those are fed by the arts.”

When my son with disabilities was younger, I often felt a failure because I still grieved for him. Why did I feel sad, mad, guilty and anxious – when I adored my son and he brought me such delight?

Here are some of the reasons.

I couldn’t give him a clean slate in life. When I shared the joyous news of his arrival, I had to mention his suspected genetic condition, and worry about how people would react. I felt guilty that I had done something to cause his condition. I couldn’t fathom why this had happened to my son, to me, to my husband. I was terrorized when Ben choked on solids – leading to frantic 911 calls and ambulances – yet was told (incorrectly) they were isolated incidents. From age one to four he had severe, recurrent ear infections that couldn’t be treated with eight sets of tubes or antibiotics, and caused excruciating pain. He lost words, never to speak them again. The list of diagnoses he collected over the years felt like cruel blows: failure to thrive, uncoordinated swallow, dwarfism, submucous cleft palate, inability to speak, hearing loss that wasn’t properly diagnosed till age five – despite repeated hearing tests! – fine-motor problems that meant he would never write, early-onset arthritis and pain, bony growths that would have to be removed surgically and mental retardation. Whenever we were adjusting to one diagnosis, another was walloped on.

Physical and speech therapy were gruelling and didn’t result in the gains we had hoped. Ben was not the poster child for early intervention. If success was measured by his ability to reach rehab goals, I had never been so unsuccessful in my life.

Surgeries that were explained as simple, routine, didn’t go as planned (an epidural that didn’t ‘work,’ a testicle lost to infection, plastic surgery to reconstruct his ears that so failed that the resident who saw us post-surgery asked: ‘So you’re here about having his ears fixed?’).

Heartless professionals, like the surgeon who walked into a room full of residents being charmed by a babbling Ben and demanded angrily: “What is WRONG with his head?” Or the perky pediatric dentist who asked me in a pitiful voice, as I held my precious 18-month old son, in whom I was so proud: “Will he E-V-E-R walk?” “Is he short for his age?” “Is he mentally retarded? Oh, I guess you wouldn’t know that yet anyway!”

By the time Ben was a preschooler I felt I should be “over” my painful feelings and was petrified that I might never come to a place of acceptance. I sensed friends who hadn’t experienced disability in their children were tired of hearing me express my angst. Physicians said things like: “You need to face reality” – as if I could choose acceptance the way one chooses a shirt to wear that day.

I recently read an article by psychologist Ken Moses that helped me understand that the painful feelings I experienced served a purpose, and I now see them as a natural and healthy part of parenting a child with disabilities.

Dr. Moses explains how different aspects of grief – denial, anxiety, fear, guilt, depression and anger – allow us to cope in the early days, mobilize resources and support, and over the long-term to self-reflect, grapple with and redefine our values, priorities and beliefs, and change and grow as people.

I wanted to interview Dr. Moses, but couldn't locate him. In addition to being a psychologist, when his article was published in 1987 he had a child with disabilities and worked with groups of mothers of children with special needs.

Here are some relevant points I pulled.

In working with mothers he notes: “It became evident that these people were manifesting a grieving process…The impairment, not the child, irreversibly spoils a parents’ fundamental, heartfelt yearning. Disability shatters the dreams, fantasies, illusions and projections into the future that parents generate as part of their struggle to accomplish basic life missions. Recovering from such a loss depends on one’s ability to separate from the lost dream, and to generate new, more attainable dreams…Each feeling state, no matter how negative, serves a specific and helpful function.”

Dr. Moses says grief emotions provide the context for self-examination that can lead to positive change. There’s no recipe for the order in which we experience them, he says, and no “right” way to grieve.

He argues that “the concept of acceptance” as an end-product for parents “is totally unfounded. In almost 20 years of working with bereaved people, as well as dealing with my own losses, I have never seen anyone achieve acceptance of loss, only acknowledgement. Belief in the concept of acceptance leads parents into feeling like failures for not being able to attain it.”

Here are some of the positive uses Dr. Moses sites for the different emotional states of grieving:

Denial: “Denial buys the time needed to blunt the initial impact of the shattered dream, to discover the inner strengths needed to confront what has really happened, and to find the people and resources needed to deal with a crisis for which one could not be prepared.”

Anxiety: “To deal with having an impaired child, parents go through dramatic changes that affect their attitudes, priorities, values and beliefs, as well as altering day-to-day routines. Such changes require a great deal of energy. Anxiety mobilizes the energy needed to make these changes...Anxiety is the inner source of the need to act.

Fear: Fear is a warning that alarms the person to the seriousness of the internal changes that are demanded…The parents experience the terror of knowing that they will be required to change on a fundamental level, against their will, with full understanding that the process of internal change is very difficult. Significant losses produce a profound sense of abandonment and vulnerability…Fear is the medium that encourages the struggle to reattach, to love again in the face of loss.”

Guilt: “Generally, parents of impaired children express guilt in one of three ways. One way is by telling a story that explains how they are responsible for their child’s handicap. The current emphasis on the prevention of birth defects has brought many parents to feel that they caused their child’s impairment. The issue is not the logic, but the feeling of guilt. Another way that guilt is manifested is in the conviction that the child’s impairment is punishment for a past inappropriate thought, feeling or action. Lastly, guilt can be expressed through the parent’s belief that good things happen to good people…Because parents have an impaired child, they must be bad people...How can such painful explanations of tragedy be useful?...Simply by being explanations. Guilt “explains” the unexplainable. When people confront a loss, the beliefs they held regarding cause and effect, right and wrong, and their impact upon life are deeply shaken. Basically the guilt-ridden person is saying that they are accepting responsibility for everything. It feels better to do that than to believe that they have no influence on anything! Guilt, in this sense, helps one to redefine the issue of cause and responsibility in the light of loss.”

Depression: “Depression is part of normal, necessary and growth-ful grieving. As we mature, we develop and modify our definitions of the following words: competence, capability, value and potency. They are words of profound personal significance. They are the criteria that people use to decide if they are okay or not. When parents are confronted with an impaired child, whatever definitions they held for competency, capability, value and potency usually no longer apply. How does a mother feel competent when she has a retarded daughter? She can’t use the measures of her peers, like having a daughter graduate from college…What is the worth of a father who cannot 'fix' what is broken in his impaired son? A parent feels unable to act effectively (helpless), unable to imagine that things will ever get better (hopeless) and unable to believe that their lives are touched by good luck (hapless). Depression is the medium that helps parents come to new definitions of what it takes to be competent, capable, valuable and strong people, even though their child has impairments they cannot cure.”

Anger: “Parents feel anger at the harm done to their child and the shattering of their dreams…One’s internal sense of justice is severely challenged. As events occur that violate one’s sense of justice, the outrage must be expressed. Those expressions help to redefine one’s concepts of fairness and justice…and develop new beliefs...that make the world a tolerable place to live, even though terrible losses can occur.”

Dr. Moses says that expressing grief emotions deeply and fully with other parents and professionals enables parents to develop new values, priorities and beliefs that promote growth and resilience.