I thought it about time for a lighter blog after a couple of weeks of turmoil for us health wise with Oscar , we made a decsision to withdraw from the trail of his anti anxiety meds, and were not looking back, were going for it ,new energy ,fresh outlook and very much working with what we have , which currently presents as some unpredictable behaviours due to anxiety , seizures managed by medication and a little darling boy who seems very happy an unaffected by any of his own behaviour currently, if anything he’s definitely benefitting from returning to normal medication doses and long may it continue .
oscar has always had little quirky ways and this week they have started coming out more and more and I absolutely love it , firstly because it shows personality which lately hasn’t been that present, and secondly because there’s so many parts of being an Autism parent at points that can be dark, and with this in mind we really do make sure we enjoy the highs, and make sure they outweigh , as on the dark days the highs are the moments I reflect on ,and I feel excited to make memories with Oscar in the future as he grows , one things for sure it’s never boring around Oscar, he is the spice of our lives and we certainly have more happy tears than sad .
so this week after black monday( see my last blog) I was feeling really defeated and worried , I needed to take control back, we started Tuesday no nasty mind altering drugs well not new ones anyway, just the usual meds we know are safe for him that help him regulate his mood and control 75% of his seizures ,we began our day happy, it was so lovely I felt content taking him to school he was chatting away in the car ,he ate his toast and skipped into school, on pick up I was nervous as the end of the day usually can be hairy!!!!! lots of throwing himself on the floor and mostly I hear him before I see him but today he was skipping around the room, I knew then I had made the right decsision to withdraw from the trail.
Wednesday he wanted to wear his sticker he earned for getting dressed nicely, on his forehead so that’s how he went into school again happy, reports from the teacher we’re much more tolerant in class and calmer , and I was then glad I was so proactive in my forward planning this week, after Monday’s fiasco I called a talk about child meeting and requested his private OT started a new assessment towards his EHCP review, as we have a new diagnosis now and we need to tool up , so he had had a great day at school the teacher says sorry he’s not wearing socks he was walking like there was a nappy malfunction! But it turned out it was no socks he looked very happy with himself and pulled his hands from behind his back to reveal his, socky cats he called them he had made himself hand puppets called them socky cats and was chatting away he was also singing on the way home with them .
And I felt really smug as this is typical behaviour of an average 5 year old he also said going home whoever said kids with Autism have no imagination is wrong!
I don’t ever know what the situation will be when collecting Oscar, as he’s so unpredictable and his seizures are also unpredictable, he’s a big deal in my book Autism, epilepsy, extreme anxiety and when he’s in a good mood , am I skipping up the road alongside him? Hell yes I am ,I’m enjoying every minute
I do tend to not measure in days , I measure in moments as it’s those that count , we dont have bad days we have bad moments then a good one swallows up the bad
The whole experience of being an Autism parent is eye opening, heartbreaking, liberating, exhausting, heartfilling, heart hardening, and full of hope and love , it’s all the good things of parenting, mixed with all the sad things of advocating and all the pride filling of parenting and advocating together , and you never stop learning, and if you open your heart and your eyes you can meet some amazing people that stay with you ,and hitch hike your journey with you , we hope to be part of yours too
