This is the first in a planned series of blogs #LivingwithLD about life with a daughter with a severe learning disability, which is part of an undiagnosed genetic condition. The series focuses on raising awareness of the challenges and joys of living in a household which embraces learning disability.
Living Our Lives on Replay
A typical morning in our household starts with GG before she has even been helped out of her sleeping bag asking….
GG – ‘Me school today’
Me – ‘Yes, GG school today’
GG – (Signing Monday / general hand flapping) – ‘Monday, me go school’
Me – ‘Yes GG, it’s Monday and you are going to school’
GG – ‘Daddy! Me go school today’ (Imagine high pitched, excited, squeaky voice)
GG’s Dad – ‘Yes GG, it’s school today’
GG – ‘Daddy, Monday, me go school’
GG’s Dad – ‘Yes, it is Monday so you will go to school’
GG – ‘Me dressed’
Me – ‘Yes, it is time to get dressed’
GG – ‘Me get dressed, me dinner (breakfast in GG’s world)
Me – ‘Yes, let’s get dressed and go for breakfast’
GG – ‘Me breakfast, me clean teeth’
Me – ‘Yes after breakfast, we will clean your teeth’
GG – ‘Me teeth, me hair’
Me – ‘Yes, after your teeth we will brush your hair’
GG – ‘Me hair, me iPad’
Me – ‘Of course you can have your iPad while I brush your hair’
GG – ‘Me iPad, Daddy me shoes’
Me – ‘Daddy will help you put your shoes on’
GG – ‘Me shoes, me coat’
Me – ‘After shoes we will help you get your coat on’
GG – ‘Me coat, me white bus’
Me – ‘That’s right, the white bus will come for you – shall we get dressed now’
GG – ‘Me dressed, me dinner’ AND REPEAT! REPEAT! REPEAT!
This constant running through of the morning will happen 20+ times every morning – over and over for more than an hour, only pausing when she has her beloved iPad and baby videos to watch. No-one else can get a word in and we have become skilled at conducting this never-ending conversation, whilst also chatting to / giving the usual morning routine instructions to GG’s siblings.
However, we know that not listening or replying will fuel GG’s anxiety and this repetition is part of her coping strategy. She needs to know what is coming next and needs almost continual reassurance of what to expect. We have tried ‘now and next’ boards, distraction and pre-empting the run through by talking it through first, but nothing seems to provide the same level of comfort as GG verbalising it for herself.
In the early days when classed as ‘developmentally delayed’ and the future was so uncertain, we would have been absolutely thrilled to glimpse a future in which GG could communicate. GGs speech is still unclear and to those who do not know her well, you would not understand all that she is trying to say but we know, we hear it over and over again.
We will always celebrate GG’s communication abilities and be forever grateful that she has developed these skills, but living our lives on replay does at times test our patience to the max. #livingwithLD.