Investing long term
To me I feel it’s so valuable to be setting the correct rules now , Autism has no limits my child will smack me in the face if he feels like it, it’s a reaction to something perhaps but I don’t turn a blind eye.
That makes the day to day stuff hard as I’m on it constantly I’m not just going to let him do what he likes for an easy life.
We have expectations and yes sometimes I do feel like burying my head in the sand fir an easy life but long term that’s a fail, for the average Autism parent , there’s always a plan there’s always structure, we have tidy up time we use visual clues, we rotate toys to keep mind busy ,and no he doesn’t always play ball but I battle on and deal with the reaction in the hope that one day it may just click, oh this is what we do ok !it’s continuity and a long term investment I feel, I do not want my child to think it’s ok invade personal space or lash out , it is easy to turn a blind eye when there small, but I know people with older Autistic children who are hurt, then they cover it up as the fear of residential is too real, then they become prisoner as they have created an adult they have fear for, for me I’m mindful of this so I will happily take the battles now , it’s the hard way but I feel the long haul is the way .
im constantly looking for behaviour techniques , communication tools to attempt connecting with him to create that level of understanding to my child, we fail sometimes and others we progress but we keep going , as long term if he is having the same level of input from us hopefully through speech therapy and Occupational therapy both of which I pay privately for , I’m hoping we can all work together to keep Oscar in a constant state of feeling ok so he can enjoy his early years education and ultimately achieve his targets .
The brain space you must allow for this constant battle of your goals personally for him as his mum , his educational and health goals set by his school and his private therapy targets are to be honest overwhelming as everything looks good on paper , however in the driving set is an unknown quantity who is mood lead and sometimes his anxiety means Autism wins 😕
and reading his EHCP report literally if he was up fir adoption without a photo would have no chance!
we remain really hopeful about the level of support Oscar is getting and how well we are supported with Oscar , and treat everyday as brand new , every tiny achievement we celebrate as everything is huge it has to be when nothing feels possible sometimes as you just get shut down and your efforts thrown back in your face, but that’s Autism it’s the non flexiable part of it , if a door gets shut I simply try another route , there are some battles I’m not willing to tackle yet getting undressed and dressed is certainly one , he attacks and to be fair I don’t go there, we preoccupie him and dress and undress him using the laptop he watches something and we dress him with super speed , I still name the items but we are just not ready for dressing yet to a schedule but it’s ok it will come , clothes and shoes are a huge deal , Oscar didn’t wear shoes until 2.5 yrs he refused we would put on he would take off! It was a nightmare I would carry slipper socks in my bag so if it was cold he wouldn’t get freezing cold feet, we once lost a brand new kicker boot! We soon learned to pick our battles! And for now dressing isn’t something I’m ready to take on, mornings are stressful he must have his medication it’s vital so as long as he drinks that I’m willing to let him watch the laptop while I dress him , we are out by 8 am and to be beaten the crap out of at that time of the morning is just added stress .
so for me ultimate long term goals are
Develop Oscars speech and understanding of language as much as possible , this I will need help with.
to work with him to help him to understand his emotions , this I will need help with I know
to divert or stop violence also will need help with
over time with constant input from familiar professionals and the level of pro activity we currently have , I would like to feel and I’m hopefully with the rise in Autism awareness, that Oscar could lead a full life and be accepted in society as himself, be able to communicate, maintain friends and relationships and have equality that’s why I take the hard road now 💙
One thing that’s been on my mind a lot lately is I need to build an army for Oscar as he grows ,which is why I wanted like ten kids so he had a big network once I’m gone, as he may never have his own family but he could be connected to his siblings families , one thing that weighs heavy on me is who would attend his funeral if I’m gone? I read a blog about it the other day and she’s right what happens to our boys once everyone who loves them has gone, what if they don’t make friends? This bothers me a lot and yes sometimes blogging is a bit depressing as writing things like that is depressing but it’s were we are at guys! It’s that real ! There are the fears of an Autism parent! They don’t go away and I will blog about them as it’s unspoken those fears! And I need to keep worrying and building so that isn’t a reality , I’m pretty sure sticking my head in the sand wouldn’t fix it .