Today i have been busy working with Hayley, we had lots of fun together she was super excited today. she knows today We were working on self care, shopping and making choices for herself, she had what she wanted to do today already planned in her head, one of her friends motioned a Mickey Mouse sale to her on Friday she had not stopped talking about it since she is a big collector lately one of her special interest that makes excited the most.
Before we started our day off she wanted to use her exercise bike and got me to set her timer for 10 minutes , you have to watch her though or she will forget to pedal, the timer has an alarm telling her when to stop so that helps her to no when time is up.
WE have a pretty set routine for Hayley and try and manage outings to fit in with her food schedule so Wednesday is a treat day she can choose any drink and what ever food she likes, today though she opted to have lunch at mine after we came back from her haircut and holiday shopping. Hayley’s off on holiday for a week. she is really looking forward to it.
Her excitement and happy mood was Contagious its hard not to laugh and smile when she is is great spirits.
She was happy with all her things she brought, at the hair dressers they were brilliant pulling out a book of hair cuts she could have having that helped even them know what style to do for her, sitting watching her have a long chat with the hair dresser as she was working on her hair, was great the stylist helped by asking questions she could answer, Hayley has echolalia so repeats things a lot but if you ask her questions she can give you and answer most of the time it is things she has heard others say, she knows basic things though, she must of told everyone over a hundred times Mickey mouse is on sale over the last week.
Her choice of place to go for a cold drink of course her favorite local pub. she though she would tease dad by sending a picture, thought it was very funny in a i am here and you are not kind of way, they like to tease each other a lot them too.
We returned to my house for lunch and she wanted to show and tell Nik and the kiddo’s what she got. After lunch we were relaxing in the garden together listening to her favority tunes and having a dance.
Her favorite three tunes she has learned the words to, Boney M Brown girl in the ring , Rivers of Babylon and Status Quo’s Rocking all over the world . Quite easy songs for her to sing a long too, she has her own little actions for them I guess I got caught up in the moment and taught her the YMCA dance.
She came with me and Niki on a mad dash to shops for more cold drinks and tons of ice cream. At least I know on hot days when they are all with me they keep thier fluid intake right. Sun cream is applied .
AS well as her amazing stake of Mickey clothes Hayley brought a 3 CDs of Disney songs which she made me play in the car all the way home to her house . so i would say a very Happy Hayley will sleep well to night if the heat is not to much for her.
Jake and Niki and My Nik
MY kids were looked after by my Nik so good having him here to help with them, I can relax and work without worry because daddy’s got it covered,
Yesterday could of been very difficult for us because about 15 minutes after I picked up Jake from the last morning of school he accidently dropped his Wii switch controller and it popped open, easy enough to fix if you have the tiny little y shaped screwdrive , unfortunatly for us we didn`t have one .
I am going to tell you a little story my hubby collects thing screws,tools, computer parts and leads, we have this long standing joke in our family I brought him a man shed to keep his bits and bobs in in 1996 he got around to fitting it in 2006 yep that long i must admit though not really his fault work weather lots of life happening but its full nut every time you have that one thing to fix on a car , the kids tech and yes most of the time we fix it our selves as they are always being dropped or broken like charging leads, i am sure many other parents with kids with extra needs know this gets expensive you have to learn lots of things, as being with out can cause huge meltdowns, this time though Jake has coped pretty well he has even been out side on his chopper bike practicing riding it, he is getting quite good at it now.
We also have too replaced our boxing bag it has been a huge frustration busting thing to have and to Chanel the angry feelings. It has finally said I need a forever holiday. One day I will have to share all the things that have really been beneficial and a huge help with the kids emotions, sensory, anxiety. Thier has been some along our journey that did not help and had a negative impact, some worked for a while, but a few had a massive long lasting impact.
The kids are finding the heat to much Niki feeling faint earlier Jake not wanting to move around much, Just short bursts of moving a round and going in the garden, weather sometimes makes thier palpations worse and they have an increase in insomnia and feeling faint. I wish it wasn’t like that for them but we just get on with it and live with it the best we can it is as much a part of them as being autistic.
NIki is growing a lama it hatched yesterday
She got it for Christmas
She also Made herself into a Pokemon
Mum has been readmitted to hospital today , maybe if the after care was followed up this could of been avoided, but still at least she is getting the treatment she needs for now and she finally was seen by her own doctor today. Shame she had to complain to be seen her issues are complex so she should be monitored properly. I am hoping for her sake the stay is not to long. this wether for her is not so good .
The book and E-book is beginning to show up again on line for pre order so excited, not long now I cant wait.
Anyway I must go now time to sleep
Good night all much love Faye xx