New RJCHC parenting workshops give families strategies and solutions
Angie Butt’s daughter, Eva, was born with a variety of health challenges. Over the last few years, she and her husband have been focused on getting Eva, 6, the help she needs from specialists at McMaster Children’s Hospital (MCH). And now there’s an opportunity for them to take part in a series of parenting workshops called Conversations in Wholeness and Agency Fundamentals to learn strategies to direct their own care.
In the first workshop, Butt says she learned about listening skills and the benefits of slowing down and being calm to better receive information.
“My daughter was non-verbal until she was almost four and still struggles to verbally communicate. I have had to learn to listen differently already,” she says. “It was a great conversation about how our choice of words directly affect behavior and outcome. I am looking forward to continuing great conversations in the next workshop.”
Complex, integrated care at MCH
Butt’s first pregnancy ultrasound showed very low amniotic fluid and so her pregnancy was considered high-risk. Once Eva was born, Butt knew her child was different than others. Eva didn’t try to move like other babies. She wasn’t making the usual baby sounds and she had trouble feeding.
Eva received care in the MCH neonatal intensive care unit. She had low blood sugar and a dislocated hip. She needed a pavlik harness and then surgery to put her hip back into place, followed by months of recovery in casts and braces. A few weeks before her fifth birthday, she had a second hip surgery and a blood transfusion.
Butt says at times the amount of care Eva needed was overwhelming and made her feel shaky about her parenting. “I didn’t feel I could trust my instincts. I felt like I had no idea what I was doing,” she says.
As time went on, and with help from community services and services at MCH’s Ron Joyce Children’s Health Centre, Butt has gained confidence as a mother and an individual.
RJCHC offers many services that work together
Eva was referred to Ron Joyce Children’s Health Centre (RJCHC) for physiotherapy, which then resulted in referrals to many other services there, including occupational therapy, speech therapy, recreational therapy, the Technology Access Clinic to help children communicate in alternative ways, audiology, and the prosthetics and orthotics department.
She was diagnosed with Global Developmental Delay, meaning she takes longer to reach developmental milestones, plus a secondary diagnosis of Dyspraxia, which affects movement and coordination.
“We also have an eye doctor, a neurologist, an allergist, of course a surgeon, social workers and now an endocrinologist,” says Butt.
Services for caregivers, too
Butt and her husband have attended a variety of workshops at RJCHC, including the latest workshop offered by the Developmental Pediatrics and Rehabilitation Program (DPR), called Conversations in Wholeness and Agency Fundamentals.
DPR provides outpatient services to children with developmental, behavioural, physical, or communication needs and their families. The program has partnered with Holland Bloorview Hospital in Toronto to offer free virtual parent and caregiver workshops on a variety of topics.
The sessions are based on “solution focused coaching” styles.
“Humanist Solution Focused Coaching is really about children and families having agency and driving their own care. It’s about recognizing that they are whole and have the resources and ability to drive their futures. And providing families with the communication tools to do so,” says Nagham Azzam , a social worker at RJCHC and one of the workshop facilitators.
The introductory session, Conversations in Wholeness and Agency Fundamentals, was first offered in May. It’s a prerequisite to the other four courses in the series:
- Advocacy: Caregivers will learn how to more effectively advocate for their child, using solution focused communication principles
- Conflict reconciliation: Caregivers will learn how to manage conflict in ways that emphasize mindfulness, strengths, resources, dignity and respect
- Re-framing and goal setting: Caregivers will learn how to reframe their child’s behaviours and thought processes in a manner that amplifies positive development
- Self-care: Caregivers will learn different tools and techniques to promote caring for yourselves as caregivers
Butt has taken Eva to many community programs over the years, where she has met supportive staff who she calls “everyday heroes,” “friends,” and “fantastic advocates.”
She also attended a RJCHC workshop that helped her find the language to advocate for Eva’s needs at school and participated in virtual music therapy sessions where she enjoyed seeing other children use their communication devices, just like Eva.
Then, she was offered the opportunity to take part in this new workshop series – and she’ll keep learning and growing with her child.
“When I first had Eva I was in a very negative headspace. Still, I always worked with Eva the best I could. At some point I realized if I really exaggerated my positivity towards favourable actions, Eva had more incentive to keep trying. Lots of compliments and praise and hand clapping in a slightly over the top kind of way was helping her overcome her struggles, so I kept going even though it felt strange to me,” she says.
“Eva is very intelligent. She can hear perfectly and then some. In some ways, she is ahead of children her age, in others she’s well behind. Eva doesn’t appear to care that she is different and I love that.”