Very busy day yesterday.
Job number one was to call at the hospital and pick up Islas piedro boots that have been in for repair. Annoyingly Isla has been without her specialist footwear for weeks now because the first time they were sent for repair they came back still broken.
Isla needs her specialist footwear due to her hypermobile joints. It’s not really until she’s without them that I realise just how much she needs them. Without them she loses her balance, she’s stompy, she’s flat footed and she’s clumsy. As soon as we picked them up she kicked her other shoes off to put her repaired shoes on, Isla obviously notices the difference.
Then we had Islas wheelchair appointment. Isla has been too big for her chair for a while. Before Christmas wheelchair asked me to come back in a few months and they would replace Islas chair. They also told me we would need a bigger car as Islas new chair would no way fit in my old car. We don’t get high rate dla mobility for Isla and so we don’t qualify for a mobility car so we went out and bought our BMW specifically with this in mind.
As soon as we got in the room yesterday Isla more than proved her chair isn’t working for her anymore. She bounced it across the room with her feet flat on the floor and she almost tipped it. Sure enough we’ve been graves a new chair which should be here in 5/6 weeks but I wasn’t even prepared for the size of it, it’s huge! I just hope I’ll be able to lift it in and out of our boot as it’s quite high up!
By this time I was a bit frazzled. I wondered why it had taken so long to sort out Islas shoes which she desperately needs, why Isla had to wait for a new wheelchair and why our car had anything to do with it. I thought about how these are the only services now involved in Islas care and I’d even had the run around with them. I thought about why you have to fight for everything and realised autism still isn’t taken seriously, it’s still ‘that disability’, and I felt sad. I didn’t want to show the kids how frazzled I was so I drove them to the place they worship – KFC. You will often find us in KFC in the holidays because both kids like it there, it gets us out, I know both kids will eat it and we get a few minutes to relax. As always they behaved impeccably. Isla is that much of a KFC gravy addict she even drank the gravy that was left.
Billy was ready for home after that, his tonsils are still hurting and he’s tired so off we went.
We watched films all afternoon before Isla had her hair cut.
Isla having her hair cut is a bit of a workout for me and Islas hairdresser Georgina. We now have it done rally regularly so Isla knows what’s going on and gets used to it.
Usually I have bags of crisps and kinder surprises at the ready and I sit and bribe her and hug her and hold her while it’s done. She sometimes runs away, she always lets us know she’s not happy and it’s all a bit of a trauma for us both.
Last night though as she’s proved each time , it was better. She sat for starters without crisps or food bribes, she just sat on my knee and watched YouTube. She did get fed up eventually and run off but she did come back and she did show us she’d had enough but she did accept that it was nearly finished and let Georgina finish.
So much better each time, it used to be so bad we would both cry!
Then to fat class I went where I lost 1.5lbs, hooray for me!
I got home and Isla was giving her dad a thorough examination with her doctors kit. I was stunned, I’ve seen her play with it numerous times and use each bit properly but never heard her say anything. Last night she was saying ‘check your heart’, ‘poorly’, ‘temperature’, ‘oh no’. It was amazing! She was now scripting, she was not using echolalia, she was using her words in context! Just brilliant.
A very busy day but lots achieved, just got to get our poorly boy all fixed now.