Progress. A only woke once last night at 2 ish. She was hard to settle but after I winged my way through telling a story (just off the top of my head - couldn't risk putting the light on) she drifted off. Phew. Unfortunately I was pretty awake but I think I grabbed an hour in the end.

Morning
#LearningDisability #RettSyndrome #SETD5Syndrome #SleepDisorders

A bit niche, but I'm looking for people in the #RettSyndrome #SETD5Syndrome #Autism #LearningDisability #Epilepsy community. Our daughter has all of the above. Would love to meet fellow #ParentCarer #UnpaidCarer folks

School just phoned. A slept nearly all afternoon, then woke just in for the Wellbeing lady to give her a little aromatherapy massage before hometime. If only all schools were this flexible #RettSyndrome #SETD5Syndrome #Disability #LearningDifficulties #epilepsy

Our daughter A, who has 2 rare syndromes and complex needs, has been living her best life out with her wonderful PA this evening #RettSyndrome #SETD5Syndrome #DisabilityMstdn #LearningDisability #Autism