#LIVING WITH LD – Snow Days

fruit-3074848__340There are a plethora of memes across Facebook at the moment depicting the idyllic view of a snowday, families building a snowman, having a snowball fight and sledging making for a day full of fun. For most people, the reality is very different and it certainly has been for us.

Our children have very different reactions to news of a snowday. Once our eldest had been reassured that she would not be missing out on swimming at school, the prospect of a day or two at home was celebrated. As for our youngest, he was outside building a snowman before he had swallowed the last mouthful of porridge!

For GG it was a much more stressful experience. We had talked about snow and not being able to go to school but GG works in certainties. Routines are very important to GG and being told suddenly, midweek, that the normal school routine was disrupted was a tough message and it took a good hour of constant questions for GG to understand that she was not going to school.

Despite the bitter winds, the other two braved the outdoors for a good part of the morning. GG all wrapped up, lasted less than 5 minutes – it is hard enough walking through snow, so being unsteady on your feet makes it almost impossible. However, GG has thoroughly enjoyed watching our 6 month old puppies bounding around like lambs, and loves helping to dry them off when they finally decide to come back in.

winter-1861704_960_720 snow.jpg

For most kids, one of the positives is being allowed to watch TV or a film – particularly if like us, there are two parents trying to work from home! GG has never engaged with TV except for the odd episode of Mr Tumble. For GG, the iPad is her time out as she watches snatches of YouTube videos of babies and toddlers. Her current obsession is watching birthday parties for 1-3 year olds and she happily joins in a chorus of ‘Happy birthday’! The iPad has been GG’s saviour for the past two days.

The toughest part for GG is not knowing what will happen tomorrow. The continual ‘where me go tomorrow’ is part of our everyday. Even when the answer is certain and welcomed – for example, a clear answer of ‘GG go school tomorrow’ – GG asks over and over the same thing. Options are not helpful for GG so an answer of ‘maybe school or maybe stay home if more snow’ is anxiety inducing. We have tried hard to reassure her as we cannot give a definite answer – even putting out two lots of clothes ready for morning, to demonstrate the point.

We have had a few lovely moments today with a game of boccia (a type of sitting down indoor bowls), all 3 kids trying to peel mushrooms for dinner was a rather wonderful / stressful 10 minutes and there have been snippets of sibling harmony when all of the sofa cushions were used to build a DIY soft play! However overall, GG has had a much tougher couple of days than her siblings and this is something we need to try and improve on in the future.

I have taken lots of photos of our house and garden in the snow. Some pictures of the kids over the past two days so that in the future I can build a social story based on a real life example that will hopefully help us to prepare GG for future snow days.

In the meantime we will keep our fingers crossed that the snow stops, the wind dies down and GG can return to her normal routine ASAP.

Note: #LivingwithLD is a blog series about living with a daughter with a severe learning disability as 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.

 

#LivingwithLD – Living Our Lives on Replay

fruit-3074848__340

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.