Daily routines that help
Children with often feel safer with predictable routines. Try:
- Visual timetables – pictures showing the day's activities
- Now and Next boards – what is happening now, and what comes next
- Consistent bedtime rituals – calming, repetitive, the same each night
- Simple choices – "Toast or cereal?" rather than "What do you want?"
Siblings
Brothers and sisters need support too:
- Explain in words they understand ("His brain is learning more slowly, but he is still your brother")
- Give siblings one-to-one time
- Let them ask questions without judgement
- Watch for them taking on a caring role too young
Some areas have sibling support groups — ask your local children's centre or contact Sibs (sibs.org.uk).
Parent wellbeing
Caring for a child with can be exhausting. You may:
- Feel anxious about the future
- Compare your child to others
- Worry about diagnosis delays
- Feel isolated
This is normal. Consider:
- Carer's Allowance – check if you qualify
- Short breaks – respite care via your local authority
- Parent support groups – online or local
- Counselling – many carers' centres offer free sessions
Easy Read and accessible information
As your child grows, they may benefit from Easy Read materials. Ask for:
- Easy Read letters from the hospital
- Picture-based communication
- Accessible apps and games
What families say
"We stopped trying to keep up with other families. Our weekends are slower, our holidays are different, and we are happier for it."