Find What You Need
You came here with a question. Something is happening with your child, or with you, right now, and you want the resource that actually speaks to it. Everything is grouped into five areas that follow what families are really living.
Most resources suit all ages and stages. A few are designed for families supporting teenagers or adults with 22q, noted in each category.
All on-demand webinars include subtitles. If you cannot find your preferred language, get in touch and we will organise it.
We keep adding resources across all five areas, so it is worth checking back as the library grows.
Looking for something you have not found yet? Get in touch. We would love to hear what would help.
Anxiety & Hidden Struggles
6 resourcesBehaviour & Emotions
3 resourcesCommunication & Social Life
4 resourcesEveryday Challenges & Wellbeing
7 resourcesFamily Life & Parenting
5 resourcesNot sure where to start? Most resources suit all ages. Ask us →
Where families start
A good place to begin. This updates itself as families explore the library, so it always reflects what is resonating right now.
The Hidden Struggles
The mental health landscape in 22q: anxiety, depression, OCD, and what families can watch for.
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Making Sense of Language
The gap between fluency and understanding in 22q, and what it means for school, home and relationships.
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Stress & Happiness in Early Adulthood
The specific stress landscape for young adults with 22q, and how families can support independence.
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Siblings and 22q
What siblings carry, what they do not say, and how parents can support them without adding to their load.
View resourceAnxiety & Hidden Struggles
In your child, anxiety often doesn't look like worry. It can show up as meltdowns, avoidance, physical complaints, or a child who holds it together all day and falls apart the moment they're home with you. This category covers the mental health dimensions of 22q: anxiety, depression, trauma, and the difficulties that often stay invisible until you're looking for them.
Anxiety First Aid
In-the-moment tools for supporting a child or young person when anxiety is running high.
View resourceThe Hidden Struggles
The mental health landscape in 22q: anxiety, depression, OCD, and what families can watch for.
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Preverbal Trauma in 22q
How early medical experiences are stored in the body and nervous system, and surface years later.
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The Quiet Struggle
Mental health in adolescence and adulthood: what to watch for, when to act, and how to stay connected.
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Quiet Shifts
A practical eBook for recognising early signs of mental health change in children and young people.
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Psychiatrische diagnoses
Dutch-language webinar on psychiatric diagnoses from a psychological perspective.
View resourceBehaviour & Emotions
What you see is only 10% of what's happening. Beneath a meltdown, a shutdown, or a moment of explosive anger, there's almost always a nervous system under pressure, not a child choosing to be difficult. This category helps you understand what's underneath the behaviour and respond with calm and confidence.
Decode the Behaviour
Why children with 22q behave the way they do, and how to shift from reacting to understanding.
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Big Feelings, Simple Fixes
Practical emotion coaching tools for supporting children and young people when emotions run high.
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Calming Big Reactions
Advanced strategies for de-escalation and co-regulation when a child, teen or adult is overwhelmed.
View resourceCommunication & Social Life
Children with 22q often sound more capable than they are. Clear speech doesn't always mean clear understanding, and that gap is easy to miss, even for people who know the syndrome well. This category covers language, communication, and the social world: how 22q shapes the way children and adults connect, process language, and build friendships.
Making Sense of Language
The gap between fluency and understanding in 22q, and what it means for school, home and relationships.
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Making & Keeping Friends
How 22q shapes social connection, and what families and educators can do to support it.
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How to Talk About 22q
Age-appropriate ways to explain 22q to your child, and why the conversation matters more than perfection.
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Chromosome Magic
An illustrated book for children aged 6–12 explaining chromosomes and 22q in a warm, accessible way.
View resourceEveryday Challenges & Wellbeing
None of it is a crisis on its own. A sleep problem, a school meeting, an assessment report to read and understand. It's the accumulation that wears you down. This category covers the practical terrain of living with 22q day to day, including understanding cognitive assessments and supporting your family's wellbeing across the lifespan.
Testing Made Simple
What cognitive and developmental assessments actually measure, and how to use the results to advocate.
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Better Sleep, Better Days
Why sleep is so disrupted in 22q and what families can do about it, for children, teens and adults.
View resourceStress & Happiness in Early Adulthood
The specific stress landscape for young adults with 22q, and how families can support independence.
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Seeing the Whole Person
A practical eBook that walks families through the assessment process and what the results mean.
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Ontwikkelingspatronen bij 22q
Dutch-language webinar on developmental patterns in 22q: strategies for home, school and daily life.
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Primary School Guide: Empowering Students with 22q11.2 deletion or duplication syndrome
A practical 18-page guide to put in a primary teacher's hands: what 22q11.2 really looks like in the classroom, and the small
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The Bridge to High School: Empowering Students with 22q11.2 deletion or duplication syndrome
A practical 21-page guide for secondary teachers: how a teenager with 22q11.2 copes and masks at school, and what educators can realistically
View resourceFamily Life & Parenting
Parenting a child with 22q is a marathon. The appointments and advocacy are real, and so is living loss, the grief that comes and goes over things that haven't happened yet or never will. This category is for your whole family: siblings, parents, and the relationships that hold everything else together.
Beat Parent Burnout
The specific quality of stress in 22q families, and practical tools for managing your own nervous system.
View resourceSiblings and 22q
What siblings carry, what they do not say, and how parents can support them without adding to their load.
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Walking With Your Adult Child
The shifting role of parents as children with 22q move into adulthood: the worry, the love, the connection.
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Care4Parents
An 8-week mindful parenting course covering stress, self-care, living loss, and the emotional landscape.
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Feelings in Focus
A 6-week emotion coaching programme helping parents understand and support emotional development.
View resourceA community, coming soon
We are building a 22qMinded community, a place to connect with other parents, and with Linda and Sasja, between webinars. It is not open yet. If you would like to be among the first to know when it is, leave your details and we will be in touch when there is something to join.