💖 About Me
Get to know me — my strengths, my needs, and what helps me thrive.
🌸 A Little About Me
I am a happy, enthusiastic and extroverted person. Above all, my goal is to live a happy, healthy life where I feel proud of who I am. I want to recognize the strengths that come from my differences and have the tools I need to live a life that fulfills me.
I thrive with a balance of low physical demand activities and downtime. I am eager to chat and participate in a wide variety of crafts, games and short outings. I am very keen to learn new things through reading, researching and discussion. I love technology especially when it is functional rather than just scrolling.
My abilities are disparate and impossible to summarize. Caregivers working with me must spend time learning about my strengths and support needs as each skill and task can be very different from the next, even when related.
😊 Personality
I am a happy and enthusiastic person who thrives on routine and low-demand social interaction. You'll usually find me in a positive mood, eager to talk and participate in activities, games, or conversations. I enjoy making small group activities fun and inclusive.
When my needs are met—enough sleep, being well-fed/hydrated, and having lots of rest time—I am at my best. I need support to track these needs every day.
I like to know what the daily plan is and contribute to decisions. Writing important things down (daily schedule and tasks) and having it available to reference is very important.
Maintaining contact with family and friends is important to me, so having opportunities to see or connect with them helps me feel happy and supported. It's important to know that I have a supportive adult nearby.
Spending too much time on devices causes me to lose motivation, which makes it harder for me to engage or start on tasks. I like to know when something will happen. Transitions are smoother with a heads-up or timer.
⚠️ Important Health & Safety
💤 Neurological Fatigue
Managing my energy is very important. My fatigue is neurological, which means no amount of training will change it. Avoiding viruses (and other infections), getting 9–10 hours of sleep each night and having downtime throughout each day is essential.
🍎 My Digestive Health
I eat a high-fiber whole foods diet to manage chronic constipation stemming from low muscle tone. I enjoy this diet. I avoid choking hazards like hard candy and I sit down calmly to eat. I avoid tomatoes, pineapple, oranges and grapefruit due to Oral Allergy Syndrome. I need reminders to hydrate sufficiently and supervision to ensure that constipation is kept in check.
🦠 Illness & Recovery
When I get sick, it takes me a long time to recover. I'm at risk of developing post-viral syndrome, so we work hard to prevent illnesses with lots of handwashing, sanitizer, avoiding sick people and masking when appropriate. I need treatment for fevers and specific support for respiratory and gastro illnesses.
🌡 Temperature Sensitivity
- In hot weather, I need to stay in the shade, hydrate well and keep my time outside short.
- In cold weather, I can only handle being out for short periods even when dressed appropriately.
🩺 Chiari Malformation Safety
- Avoid roller coasters, spinning/jerky rides, trampolines and activities that cause forceful movements front to back or side to side.
- If I ever hit my head, I need to be monitored or seen by a doctor to check for issues with my brainstem crowding.
🚨 Emergencies
I tend to stay quiet or seem reluctant to talk about something if I'm not feeling well or if something is wrong. I might not tell you right away—so if I seem unusually quiet or withdrawn, please check in with me and ask specific questions.
🩺 Information & Supportive Devices
- I am left handed.
- I wear glasses for distance.
- I have retention wires behind upper/lower teeth.
- I am proficient with computers, tablets, phone and other technology.
- I wear a nightguard and retainer at night.
💧 Water Safety
Although I love being in the water, I do not swim because of low stamina. I'm okay paddling a little, but I must wear a flotation device anytime I'm near or in water.
🧩 Day-to-Day Challenges
- Neurological Fatigue - Severely limits physical activity (sports, long walks). Worse in crowded environments and demanding tasks.
- Cognitive Challenges - Slower processing, difficulty with problem-solving in real time.
- Low Muscle Tone - Affects core strength, gut motility, oral motor function, and cough reflex.
- Post-Viral Syndrome - History of 2 bouts of PVS with profound fatigue and nerve damage lasting ~2 months, requiring home rest.
- Executive Function - Support needed to manage diet, meds, hydration, planning, organizing, initiating, and follow-through with tasks.
- Motor Planning (Dyspraxia) - Struggles with planning and executing coordinated movements.
- Fine/Gross Motor Skills - Difficulty jumping, climbing, tying shoelaces, navigating new spaces, braiding hair, etc.
- Balance - Support needed in crowded spaces, new environments, escalators, steep staircases, and navigating tight spaces.
- Proprioception Issues - Limited body awareness impacts balance and spatial orientation.
- Memory Impairment - Challenges with both short- and long-term memory. Written schedules, rules, and information are vital.
- Social Communication Differences - Difficulty interpreting social cues and engaging in age-typical social interaction.
- Specific Interests and Routines - Strong focus on specific topics (a strength as well). Transitions and waiting can be difficult.
✅ What Works Well for Me
- Provide extra processing time. I can't think clearly when rushed or pressured.
- Be calm and positive to help me feel safe. I am highly sensitive to the moods of those around me.
- I need rest throughout my day and recharge with preferred activities or quiet time. 2 hours of activity, without lots of walking, is ideal.
- When making choices, I answer very quickly. Help me by talking through options and pros and cons.
- Repeating questions due to short-term memory challenges is not distraction or lack of effort. Help me to remember.
- Schedule demanding tasks in the morning/early afternoon. After a full night's sleep, I am better able to focus and perform tasks.
- Learning new things and feeling successful is exciting and important to me.
- Offering choice is essential, especially if I'm struggling. Having a sense of control helps reduce frustration.
- Praise my accomplishments. Positive reinforcement encourages me. I like using token boards and tracking charts.
- Break tasks into small steps with clear written instructions that I can also refer back to later.
- Incorporating humor and silliness to connect with me and reduce anxiety.
- Small social settings with 1-3 people are ideal. I enjoy connecting with others but struggle in large groups or chaotic environments.
- Social cues are difficult, especially when I am focusing my energy on learning or remembering. Gentle reminders help.
🚫 What DOES NOT Work Well for Me
- Removing my personal property. I am content to put away an item if it is important to do so. Provide a timeline of when it needs to be done and when I will have time to access it again.
- Negative reinforcement/punishment. If I am having a difficult time with something that is a non-negotiable, talking it through and distraction works well.
- Scheduling multiple outings/activities in one day.
- Scheduling 2 back-to-back days of too many activities.
- Giving too many instructions too quickly overwhelms me. I need directions broken down into small steps, with time to process and check my understanding before moving on.
- Rushing me or abruptly stopping an activity without warning is upsetting and stressful. I need transitions and time to finish what I'm doing before moving on to the next thing.
- Unexpected long wait times to access downtime activities and/or items.
- Fast-paced conversations or multiple people speaking are hard for me to process.
🎨 My Hobbies
I love technology, especially when it is functional rather than just scrolling. I also enjoy reading, researching, and discussing new topics.
🌈 My Vision
Above all, my goal is to live a happy, healthy life where I feel proud of who I am and what I have achieved.
📑 Helpful Lists & More
Purse - What to bring?
- Hand Sanitizer
- Glasses/Sunglasses
Favourite Movies & TV
- San Andreas
- Wizard of Oz
My Collections List
- Acrylic gems, animals and more.
- Beads
Favourite Meals
- Fried tofu, mashed sweet potatoes, black lentils and salad.
- Raw broccoli, peppers and miso dressing dip.
Grocery List
- Staples
- Protein
I'm bored!
- Paint a wood birdhouse or sign.