Personal Experience with Public Judgment

• 10 years as "that mum" being stared at in supermarkets
• Judgment came from multiple sources: friends, family, healthcare professionals, school staff, social workers
• Consistent judgment diminished self-esteem and self-confidence
• Left feeling crushed and broken
• Impacted ability to parent effectively when children needed it most

Toby's Profile and Challenges

• Middle child, described as gorgeous, funny, boisterous, loves people
• Has profound intellectual disability, autistic, cannot talk
• Communication primarily through behavior
• Also subjected to judgment and stares
• Lives in scary world without ability to ask questions for understanding

Family's Decade of Struggle

• 10 years of terrifying, violent, challenging behavior
• Someone getting hurt nearly every single day
• Fantastic team of specialists around Toby but nobody knew how to help
• Staff lacked training in anxiety-led challenging behavior
• Very few services developed to support families like theirs
• Situation unchanged after nearly 20 years

Misguided Professional Advice

• Families repeatedly and wrongfully blamed, shamed, judged for children's anxiety-led behavior
• Told they were "too soft" and "spoiling their child"
• Everyone urged stricter, harder, firmer parenting approach
• Following advice made Toby's behavior worse, not better
• Child was frightened and distressed, needed love and kindness
• Harsh approach was never going to work

Hospital Experiences and Adaptive Strategies

• Hospitals: controlled, structured environments with highly trained professionals
• Toby: noisy, playful, chaotic, disruptive - complete disconnect
• Toby hospital-savvy, can spot healthcare professionals at 100 paces
• Knows hospital corridors create magnificent echoes when shouting
• People gave wide berth, rolled eyes within seconds of arrival

Specific Communication Strategies Developed

• For blood tests/blood pressure: thrust arm out, ask staff to pretend on mother first
• Better chance of Toby understanding and cooperating
• Toby understands better when things sung to him
• For chest examination: "Where is Toby's tummy" song to get T-shirt lifted
• End of appointment game: "Where is Toby's face" with cupped hands
• May need to perform entire routine before leaving

Professional Reactions and Consequences

• Average clinician reaction: sheer horror and fear
• Clear assumption mother had "lost the plot and gone bonkers"
• Worst case: clinician tries to take over
• Sometimes Toby physically manhandled out of room while both told off loudly
• Guaranteed to frighten Toby into worst possible behavior
• Some fantastic experiences with staff happy to join in and play along
• Hide and seek games effective for assessing cognition, communication, mobility, breathing

Impact of Judgment on Healthcare

• When feeling judged, mother wanted to run away as fast as possible
• Almost impossible to open up and share real concerns about Toby's health
• Makes clinician's job much harder to assess and develop treatment options
• Impacts Toby's long-term outcomes and well-being
• Judgment can be starting place of health inequalities

Discovery of Effective Support

• Eventually referred to fantastic team: Dr. Helen Simmons and David Smith
• Team totally understood why young people like Toby develop anxiety-led behaviors
• Listened, understood, "got it"
• Never made mother feel ashamed, blamed, or judged

Breakthrough Moment

• Mother's question: "How are we going to change Toby's behavior?"
• David's response: "I'm not here to change Toby's behavior, I'm here to change yours"
• Initial horror - sounded like same old blame
• Actually about mother changing first

Learning and Transformation

• Had to unlearn almost everything about parenting
• Learned about anxiety and why Toby's behavior became difficult
• Anxiety made him terrified
• Lashing out was screaming for help - felt frightened, world confusing
• When he hurt mother, wasn't because he hated her - trusted her most to help
• Previous approach: went "up and up and up" - stricter, harsher, firmer
• New direction: "down and down and down" - more loving, understanding, collaborative, kinder

Results and Current Status

• Toby responded brilliantly - "like watching magic happen"
• Toby now 28, incredibly happy, doing well
• Never about Toby's behavior - about helping him feel safer and less frightened

Bold Hope Organization

• Mother now runs Bold Hope - parent-led organization
• Teaches parents and professionals how to help children with anxiety-led behavior
• Over 2,000 children successfully achieved positive outcomes through their work
• Research shows prison population significantly over-represented by adults with ADHD, learning disabilities, autism
• Doesn't have to be this way

Systemic Issues and Solutions

• Decades of giving parents wrong advice, then blaming them when it goes wrong
• Early intervention with proper strategies, supports, skills, confidence can change child's life course
• Not parental competence issue
• Parents have "Ninja level" parenting skills already
• Need to provide right support and understanding

Call to Action

• Don't judge - stay curious
• Keep asking "why" questions
• Clear logic may exist for seemingly strange behavior
• Help people feel valued, understood, included
• Aligns with NHS values