Today didn’t start well, Oscar slept s little later than usual and his medication has clearly worn off , he woke in a real grump I left him a good ten minutes, as if you get that timing wrong and he isn’t ready for people your day can start in a very stressful ugly way, that includes prolonged screaming and possibly being attacked, there are some mornings Oscars really not happy at all ,today was one , sometimes he doesn’t always know who we are upon waking and is very frightened and his behaviour is fear, this is heartbreaking and the reason he is to have a brain scan in the new year to find out why this happens, and hopefully stop it for him , it’s very hard as his mum to know he goes through this ,it must be terrifying and justifies all the associated behaviours, even if it is hard on everyone in the house , it must be x100 for him!
Today he woke actually saying no, then he started screaming no Christmas in a very angry voice , I could tell by the way he was looking at me he wasn’t sure, he was making strange , when this happens if I get him downstairs for juice which has his meds in but also he likes the tv it usually makes things better, but not today it took a good 20 minutes before we left the bedroom, he really was on the edge .
Eventually I got his attention with a book and we went downstairs he then started to calm he wouldn’t look at me , at first he was on the table screaming swiping everything off but I lowered my voice to a calm tone and just kept saying ok, ok ,he then got down sat on my lap and I held him tight he started to calm down , it was a good job we had no school as it took until 930 to calm him down ready to get dressed and start his day, for the first hour and a half he wouldn’t have volume on the tv but wanted it on ,and wouldn’t have any toys out he took his time and that was ok as it’s christmas and everyday can be a pj day if that’s what’s needed.
managing visitors at this time of year is always hard as naturally people want to pop round, but we have to make sure the timings right for Oscar for it to be a success and make sure he’s in the right level of calm , today Oscar was visited by someone I call his partner in crime, his old one to one worker from nursery Teresa ( cheesa)She totally gets Oscar he adores her, it was so hard to say goodbye to her when he started school, as she had been such a support to him since the very early days , but we vowed to keep in touch and she visits him regularly, which I love her with my whole soul for as she is truly part of our support army, and she’s such an honest and true person , Oscar ran to greet her and loved her being here ,he showed her true affection it was really special .
Oscars such a lucky boy in so many ways, Where ever he goes whether it’s nursery. Specialist nursery , therapy privately or NHS he has recruited his support network and they stay with him when he transitions, on its marvellous really how many advocates one child could have, that are always there .
We may not see them often but we do leave doors open always, and he truly is building an army , this is additional to the amazing family he has on both sides with open minds and hearts to learn more about Oscar and the Autism that is part of him , it doesn’t define him but it’s very much part of his life and they all really are supporting him and us .
we are different, our set up , our family, how we work , what we survive on, what we need but we are certainly never less
Special bond
