Elizabeth is a 13 year old who has a magnetic personality and who’s 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 the planning of these dates.
Elizabeth is an early riser! She needs to go to bed early due to fatigue and has restless sleep patterns 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 do still quiver at times which is most apparent when she is writing. She also needs prompts to alternate her feet on steps or more unstable surface, for which she would hold on to a support. At school she has Physical Therapy, Occupational Therapy and speech therapy. Apraxia impacts her ability to make sounds and to recall words without prompts. Elizabeth’s intellectual disability is especially prevalent with her struggles with reading and math. She requires great repetition and automaticity is problematic. Yet, her visual memory of places and people is a tremendous strength. As Elizabeth continues to age, more sensory needs are apparent ranging from issues with hot temperatures, to wearing socks constantly, to the feeling of tags or certain shoes. She also tends to perseverate on schedules and patterns and benefits from an activity chart and plans. Behaviorally, she needs support to use the right tone and volume with her voice. Behavior plans or contingency charts are very effective when outbursts occur or unhealthy routines develop. I have found it to be imperative to have cohesion between medical, educational and behavior components, including the state self-direction program to best support Elizabeth holistically. Facilitation and guidance so that programs are not done in isolation, but rather infused and connected, is beneficial since all entities impact each other.
Elizabeth is so loved! She has an amazing support system at school. Maybe we should use the nickname, the “Mayor.” Everyone knows her! She has been fortunate to have many of the same fabulous teachers for multiple years. She also is loved in the community. The priest at our church, thinks she has a special connection with God, for which I agree too. I truly believe that kids with special needs are here for a special purpose. Life wouldn’t be the same without her “CHARM” and love.
As a baby, Elizabeth was delayed with meeting all developmental milestones. She utilized a walker to support her ability to walk on her own by age 3. Another challenge as a baby was strabismus with her left eye. She had corrective surgery by age 2 and since then has had no complications, but has needed glasses ever since. Due to her social and charming personality, her delay was not initially as concerning to specialists. Early intervention services were started by age 2 in speech, physical therapy and occupational therapy. All of these services have continued through the present. In 2016, Elizabeth went to Kennedy Krieger Hospital for a more thorough evaluation. A MRI showed bilateral symmetric perisylvian polymicrogyria and genetic testing identified her with MAPK8IP3 variant.
Elizabeth goes to bed every night with a stack of books, notebook, pen and flashlight! She would love to be able to read and honestly, it breaks my heart that I cannot make this easier for her. Even if this dream does not come true, I want her love of life to be appreciated by the community around her. My hope for her is that she is always safe, happy and builds independence. I’m so appreciative to have found this community to support each other and our wonderful kids. Thank you!
