It is interesting looking back to what I was posting 12 months ago and to see that while so much has changed, very little has changed too.
What hasn't changed though is the daily struggles and having some of those in our circle not understand Imogen at all.
Imogen was to go for a sleepover for a few days and she was so very excited that she had her bag packed days in advance. However, things went downhill after only 18 hours.
I received a phone call telling me that Imogen was non compliant, non verbal and collapsed on the floor. Long story short, but Imogen had been awake well and truly past her bed time the night before and her executive functioning wasn't at optimum the following morning. Her poor body was drained and had not had the requisite rest to deal with the extra that is required when embarking on a sleep over.
Imogen fixated on tying her shoelaces and would not respond to anything else. She was tired. Now this isn't uncommon at home, but here we understand what is happening inside her brain; we understand executive functioning. At home we know that if she has a late night (30mins to 1 hour after her normal bed time) then we are going to have to make big allowances for that the following day. At home we know the right words to use to help her understand what is going on and what we require from her. At home we adjust our schedule, our routine, our communication, our behaviour - to help Imogen cope.
We had to collect Imogen and end the sleep over. The sleepover host simply didn't understand what was happening for Imogen. They didn't know how to adjust to help her and thought that Imogen's behaviour was something extraordinary. It wasn't. It is our ordinary.
On the drive home Gavin asked Imogen what was happening when the shoelace incident went down. Imogen said that inside her head it was all dizzy and too fast. In response we have decided to slow down everything. All other holiday plans are canceled. We are here for her first and foremost.
The incident reminds us that there are so few people out there who really understand her, and fewer people know what adjustments to make to help her get through a day. It reminds me that our close friends are the most amazing people and we are so incredibly blessed to have them in our lives. Gavin and I will continue to do our thing to help others to understand her better, and thus make each and every tomorrow easier for Imogen to enjoy.