Elizabeth's Story
Elizabeth is a 13 year old who has a magnetic personality and whose smile can brighten a room. She has a heart of gold that always shines through even when behavior outbursts occur. She has more nicknames than anyone else I know, ranging from: my sugar bear and sunshine to Miss Picky.
When she is swimming, a true sense of peace surrounds her. She is an animal lover who adores her family and friends. Her calendar is consistently set for the next big holiday or celebration, and she loves the excitement of planning these dates.
Elizabeth is an early riser. She needs to go to bed early due to fatigue and has restless sleep patterns during the second half of the night. She continues to have weak muscles throughout her body, but has grown strong enough to run and bike on an adult trike. Her muscles still quiver at times, especially when she is writing. She also needs prompts to alternate her feet on steps or unstable surfaces, where she holds on for support.
At school she receives physical, occupational, and speech therapy. Apraxia affects her ability to make sounds and recall words without prompts. Her intellectual disability is especially apparent in reading and math, where she needs repetition. Her visual memory of places and people is a tremendous strength. She also has sensory needs involving heat, socks, tags, and certain shoes. Activity charts, plans, and connected medical, educational, and behavior supports help her thrive.
Elizabeth is so loved. She has an amazing support system at school and in her community. Maybe we should use the nickname “Mayor”—everyone knows her! Her life is full of charm, love, and purpose.
As a baby, Elizabeth was delayed in meeting developmental milestones. She used a walker and walked independently by age 3. She also had strabismus in her left eye, corrected with surgery by age 2, and has worn glasses ever since. Early intervention began at age 2 with speech, physical, and occupational therapy. In 2016, an MRI showed bilateral symmetric perisylvian polymicrogyria, and genetic testing identified her MAPK8IP3 variant.
Elizabeth goes to bed with books, a notebook, a pen, and a flashlight. She hopes to read independently. Our hope is that she remains safe, happy, and increasingly independent. We are grateful for this community and the families who support each other and our wonderful kids. Thank you! one another.