Unpredictable yet amazing
Symbolised for autism awareness you will see a puzzle piece a lot , it marks ongoing research into Autism , which until the end of time I would imagine they will continue this , which to me shouldn’t ever stop but I also think considering no two diagnosis present the same , proves tricky .
my take in matters and understand , and accept the future there will always be a bit missing of that puzzle ,there is a mystery about autism , my experience of Autism daily is , it is unpredictable I feel sometimes with Oscar I make huge strides, but then he can be so unpredictable ,I look at him and he’s lost the knowing look he may have given me the day before like somethings not connecting ,that was so certain the day before , on those days I head back to the predictable things with him , keep his world small so he feels safe , as I think on those days he must be working really hard to hold it together , I do think there’s truth in the belief that , yes the spectrum is vast but they all have the same trio of impairment , socially, emotionally and developmentally I think when you see some people completely lost in autism, compared to the more able to cope, it’s perhaps a case of whether they have mastered the art of control or a level of understanding and self regulation ,to be able to present as perhaps someone who’s not as autistic as others , for me with Oscar it’s 50/50 ,some days he has to work really hard , other days he has less control over regulating , the world is loud , he is less able to function emotionally and becomes overloaded , they are the days I doubt my ability to make him feel ok ,he can be violent out of knowhere , he will fight me to get away and in those moments you have to put yourself in his shoes , the behaviour is his feelings in a physical sense, he can’t tell me , we assume kids that don’t talk have nothing to say this isn’t true at all, Oscar has given me two hugs purposely I can recall in the last five years ,one when I was carrying him he hugged tight held my face and I never wanted him to let go , non verbally he was telling me he loves me , and just this week he gave me a hug and sought reassurance from me when he was poorly , That was a sideways sitting hug but in my book, it was a hug , the flip side of this is the negative behaviour ( letting me know how he feels) just this morning he attempted to scratch my face multiple times with his toes while I was changing a messy nappy , that was a clear get off me mum but it came out through aggression , I can only imagine how I would feel emotionally if I was to be forced mute! I would be on the rampage that’s for sure .
the unpredictable side if Autism is hard as a mum as you can get into a false sense of security, it can all be fine then seconds later things are far from fine, but there’s been no warning , not all meltdowns are predictable , for Oscar he can like something one day then despise it the next , a coping tool I’ve found here is expect the worst but hope for the best , as I feel personality can also be a factor not all little boys and girls are only about Autism they have personality too .
The only way I can describe Oscar when he’s not feeling able to cope is
imagine your looking after a baby you don’t know? Who does not like people! And you don’t speak the language , that’s how I feel about my child sometimes, in all honesty some days he’s calm and feels ok and some days he wants me away , doesn’t need me , doesn’t know me , in those moments I remind myself of his affections this year, as I think mums need that , he may never tell me he loves me using words, so I take the other things as that and fill my heart , lots of people struggle with the fact that there child doesn’t talk , I did ,I was once told your not listening ! Not all talking is words , and if you think about it they are right , look harder you will find unspoken words ,they are telling you through reaction and behaviour , even if it’s not all cute , even if it is a bit unpredictable. They are telling us none the less .
autism as a puzzle could compare to those really annoying puzzle boxes with more that one puzzle in, that is a payback gift from someone you might have bought play dough for !😂there also all mixed up loads of bits look the same but none fit , with some bits missing completely even though it’s new , and by this I mean it doesn’t have to be perfect to work , it can still make part of a picture but you have to fill in the gaps and not give up , your child is seeking what they need from you , you have to lower what you expect from them.
for me if we have had a mixed day like today, scissor kicks to the face with no remorse as there’s no understanding, but yet despite three absences at school came out a bit vacant, but very compliant and cute as a button , you have to try and take something from the day that’s positive , and try again the next day , this morning Oscar was semi feral but I felt glad he knew his own mind and ultimately can defiantly defend himself! And tonight he was happy to see me which was a lovely feeling as it told me he likes home .
we have to take out from it what we can to draw the strength to get up and do it all again tomorrow 💙