Giulietta is a 19 year old with a strong love of learning, a solid work ethic, and a great sense of humour. Her days include learning literacy, numeracy, and life skills in the community, volunteering on a farm, and working as a personal shopper at Loblaws. She approaches each activity with focus and determination, whether she is exercising, using her iPad to communicate, trying a new recipe, or learning something new.
Giulietta is active in an exercise program at the gym and in the community as part of a healthy lifestyle. She is also involved in choosing and preparing her meals, which she loves.
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In her free time, Giulietta enjoys visiting the library, going to the mall, biking around the neighbourhood, horseback riding, reading, and listening to music. Her wide range of interests keeps each day full.
Giulietta is an active participant in shaping her own life. The program is designed to build on her interests, honour her choices, and create opportunities for her to engage in what matters most to her. Her progress reflects what becomes possible with agency and support.
Giulietta's Journey
2007
Birth!
4
months old
Phelan-McDermid Syndrome (PMS) Diagnosis
By 3 months, Giulietta showed low muscle tone and delayed motor milestones. Formal genetic testing confirming PMS was not performed until 2012, but it was clear early on that she had similar findings to her brother Benji, who is a little over two years older and also affected by PMS.
6
months old
Early Interventions
By 6 months, Giulietta began physiotherapy and occupational therapy. MEDEK helped her learn to stand and walk, while occupational therapy focused on sitting, crawling, balance, and fine motor skills. By 12 months, she started speech therapy using PROMPT, a tactile approach for childhood apraxia of speech. Finding therapists familiar with Phelan McDermid Syndrome was difficult given its rarity, and progress was limited. Giulietta also required frequent specialist consultations, medication trials, and procedures.
18
months old
First Day of School!
At 18 months, Giulietta started a neighbourhood toddler learning program. Despite her enthusiasm, love of learning, and one to one support, severe verbal and sensory apraxia and limited independence made participation difficult. Progress in therapy remained slow to nonexistent. The program was designed for neurotypical children, which meant there was little she could be included in and few learning opportunities suited to her needs.
3
years old
Giulietta's First Steps!
Having learned from Benji's experience which therapies were most effective, we started Giulietta on MEDEK therapy at three months old. MEDEK was demanding. The home program required learning specific techniques and practicing them daily. Through intensive sessions and consistent daily practice, Giulietta gradually gained strength and coordination and walked independently at around three and a half years old
4
years old
Meeting Laura Hunter
In 2011, we met Laura Hunter, founder of the STEPS Program, a life skills program for individuals with developmental disabilities. Through structured physical activities like adapted biking, therapeutic horseback riding, and barn chores, Giulietta gained strength, confidence, and practical skills. In 2013, Laura began working with us privately to build a program across home, school, and community.
4.5
years old
First Day at MJDS
In 2011, Giulietta started at Montessori Jewish Day School with dedicated 1:1 support. The hands on, experiential approach aligned with how she learns. She followed an individualized program rather than the standard curriculum, while participating alongside classmates in classroom activities, cultural events, and gym. MJDS provided a community where neurotypical peers modelled friendship and inclusion.
5
years old
First use of Proloquo on iPad
Giulietta began using the Picture Exchange Communication System (PECS) at an early age, then gradually transitioned to Proloquo on the iPad. By 2022, with her team's guidance in developing a more advanced format, she gained the ability to express opinions, ask questions, and engage in conversations. She continues to build on this progress. The iPad is her voice.
11
years old
14
years old
Volunteer Work at Windreach Farm
Since 2018, Giulietta has volunteered at Windreach Farm, helping with barn chores like pushing the wheelbarrow, sweeping horse stalls, and feeding animals. She also participates in therapeutic horseback riding. Her goals, including literacy, communication, and physical skills, are integrated into the Windreach programming to support her broader development.
16
years old
First Day At Work: Loblaws Grocery Store
Giulietta visited Loblaws daily for years as part of her life skills program, learning to match food items, navigate the store, and develop competence in the grocery environment. In December 2023, she was offered a job as a Personal Shopper at Loblaws, selecting and scanning items for online orders. She works with 1:1 support and her broader goals are integrated into her work. She has been there for a year and a half and continues to grow.
16
years old
Make-A-Wish Trip
In 2023, Giulietta's Make A Wish trip took her to Clearwater Beach, Florida. She visited SeaWorld and Busch Gardens, relaxed by the pool, enjoyed dinners out, and spent time on the beach with her family and support team. Make-A-Wish is an organization that makes dreams come true for children facing significant illnesses or disabilities.
Giulietta Today
Giulietta continues to build a rich and fulfilling life. Through the life skills program we developed, she works on independence and literacy, including learning to read. She stays active with biking, hiking, swimming, and other sports. Her social, cognitive, and communication skills continue to grow, and she expresses her wishes, humour, and emotions more fully each day. At Loblaws, she practices real world skills and engaging with colleagues and customers. Giulietta thrives knowing she belongs, is capable, and has the support to keep growing.
