Why autism parents have a different worry meter 💙( THROWING BACK AN OLD BLOG FROM FEBRUARY WITH AN UPDATE)
As an Autism parent now with my worry free parenting days, 5 plus years behind me now.
ALMOST 6 NOW SAME RULES APPLY THE DEEP WORRIES TAKE UP SO MUCH ENERGY AND TIME SUBCONCIOUSLY, YOU HAVE LITTLE TIME TO WASTE ON TRIVIAL WORRIES, BECAUSE THE BIG STUFF FILLS MY HEAD, I ONLY HAVE TIME FOR THE POSITIVES WHICH CAN NEVER BE A BAD THING .
I can honestly say I have a totally different outlook on parenting in general, but also something that’s visited my door a lot in the last few years, crisis!!! Well moments of it , and I don’t use that term lightly the run of events is as follows, this is a short list of key moments each rendered, me completely in emotional crisis .
Oscar fell backwards off a chair seat aged 9 months knocked unconscious for 45 mins ! In France! I will do a separate blog about this when I’m ready .
oscar started to fail his checks as a baby and we started noticing he was different .
oscar had learnt to run with no sense of danger by ten months!! we visited A&E 5 different occasions with head injury’s and eating washing pellets within 3 mths and narrowly escaped a social services visit!
Oscar decided to become nocturnal from one year old and would fall asleep at 445am!
Oscar started to have absent seizures and periods of extreme panic and memory loss from age 2 this includes being unconscious and calling ambulances and throwing up grains of blood .
oscar was referred to a specialist doctor to investigate, we were told to consider he may be deaf or have hearing loss , numerous tests were carried out including an MRI scan and genetic blood testing the results confirmed full hearing present but ASD , he then had further EEG test for absences result inconclusive .cureently awaiting CAT scan as seizures continue .
oscar regressed from drinking from a cup and stopped eating anything except tuc crackers from around 2.5 years
numerous visits to emergency doctor for suspected broken bones , headbangs as Oscar knows no danger and would run everywhere and if he falls he doesn’t put his hands out to stop himself at all .
OSCARS AWARENESS OF DANGER ID STILL MUCH THE SAME, LESS ACCIDENTS THESE DAYS AND I THINK ITS BECAUSE HE IS MORE AWARE OF HIS IEN LIMITS, I DO ALSO FEEL IN MSNY WAYS HES LUCKY AS HE HAS HAD A FEW NEAR MISSES, BUT NARROWLY ESCAPES!
The list goes on and on and at points I have
questioned who the hell is writing this???
These events are not in chronological order and really are just a snip from an Autism parents journey .
I have had a few crisis points in my life before oscar also here’s a couple of examples .
IM GRATEFUL IN HINDSIGHT FOR SOME OF THE EVENTS IN MY LIFE, I FEEL VERY LIFE EXPERIENCED IN MANY WAYS AND A BIT WISER.
I was electrocuted on my honey moon in a swimming pool with my 4 year old daughter leaving her with a irregular heart murmur.
Our 5 year old dog ate all the food inside our fridge he actually ate himself to death ! It was very sudden and a big shock .
many extreme incidents that really do put you temporarily in crisis ,but we come through , easily forget and move on , but not with Autism, since we have had Autism in our lives we look back we reflect ,we weigh up what was/ is a crisis and we act accordingly and my old crisis I look back on fondly ! ☀️
As an Autism parent I’m prepared 24/7 for a new crisis, and if there’s not blood or poo anywhere, I plan my move! autism parents I believe have a different meter they filter out what they need to react too and what they do not , as the impact on the emotional environment for Autistic kids really is the balance they need, and they pick up on stress, every single Autism parent I know to speak too, has there prison that one barrier that they just can’t triumph ,wether it's eating, sleeping or not sleeping , travelling issues or dangerous behaviour, or serious health issues , something that despite all efforts, can’t be easily over come and that’s really all they measure everything else on ,as stress in general to the average person is choice of behaviour and reaction, in parenting it’s stress over your preference sometimes you like things a certain way , but with special needs children sometimes there is no fix ,and I feel that’s why we amend our meters as individuals and filter out what is choice and what isn’t .💙
I THINK THE DIFFERENCE FIR ME NOW I HAVE AN ALTERED WORRY METER AS AN SEN PARENT IS, IT MSKES YOU JUST SO GRATEFUL FOR THE SMALL THINGS, THE GOOD DAYS, THE TINY PROGRESS CAN BE HUGE AND WE CELEBRATE THEM ALL, I MOST LIKLEY WOULDNT HAVE BEEN GRATEFUL FOR A HAPPY DAY IN OUR GARDEN BEFORE WITH A HOME BBQ AND KIDS PLAYING NICELY, THE OLD ME WOULD HAVE DEEMED THAT BORING AND WANTED TO GO ON A DAY OUT, ON A BANK HOLIDAY ,BUT THESE DAYS, THE GARDEN VISION IS THE PERFECT DAY, JUST SHOWS YOU HOW AUTISM HAS CHANGED US FOR THE BETTER .
I personally let a lot of stuff go ,my meter consists of safety and health and that’s it .🙏
It’s how I cope , it’s how I stay positive it’s how we progress .
In Autism parenting you really do need to evaluate what is really important, and what’s important to you personally, then maybe change your own meter and go back to the safety, health meter, as we all know happiness in Autism can’t be manufactured , in the Past with my other kids, I’m probably guilty of creating a false environment at points , faked happiness to get the memories with them , I think we have all done that , an example is ,we’re going to have a really lovely day out today because it’s a family day! Regardless of mood you set the scene and it’s expected then everyone has to enjoy it regardless.
ALL OF THESE VALUES I THINK YOU DEVELOP AS AN SEN PARENT, AND KEEP ITS GOOD GROUNDING , ITS GOOD TO REVISIT MY FIRST BLOGS AS YOU CANT ALWAYS NOTICE THE CHANGES OVERALL, BUT LOOKING BACK I CAN SEE MY OUTLOOK AND ENERGY IS THE SAME ,BUT WE ARE MAKING PROGRESS IN SO MANY AREAS, OSCAR IS STARTING TO TALK MORE, MAKE CHOICES, EXPRESS HIMSELF AND APPEARS HAPPIER OVER ALL WHICH HAS LESSENED ANXIETY, AND MELTDOWNS WHICH HAS A POSITIVE OUTCOME ON EVERYONE .
Autism parenting that’s not a possibility, if it’s bad it’s bad ,there’s no faking for them the emotions real and there expressing it .
Autisms very honest like that, and in the moment , one thing it’s taught and teaching me is ,it’s ok to accept those emotions and not paper over the cracks .🌈💙
I FEEL ITS REALLY IMPORTANT TO TEACH OSCAR TO EXPRESS HIS FEELINGS, HE HAS A MOOD BOARD AND DOES TELL ME IF HE IS HAPPY AND TELLS ME IF HE IS SAD ALSO, IT IS OK TO FEEL SAD SOMETIMES AND FOR HIM TO BE REASSURED BY ADULTS ITS OK, ACCEPT YOU FEEL LIKE THAT WORK THROUGH IT AND MOVE ON, OSCAR WASNT ABLE TO DO THIS BEFORE SADNESS AND ANGER WOULD BECOME CONFUSED ,AND HE WOULD SCREAM AND NOT WANT ANYONE, THE TURN AROUND IS THIS, NOW IS HE IS ABLE TO RECOGNISE HIS FEELINGS MORE THAN BEFORE, AND HAS ALLOWED ME TO COMFORT HIM WHEN HE WAS HURT, AND WAS REPEATING ALL BETTER, WHICH IS A GREAT SKILL DEVELOPING IN HIM, HOW FO I FEEL? WHO CAN HELP ME? AND IF HE CAN DEVELOP THAT FOR HIS LIFE ,I WOULD BE SO HAPPY ,ITS PEACE OF MIND, AND IN THE SHORT TERM ,IM LAPPING UP BEING ABLE TO COMFORT HIM AND TRULY KNOW I MAKE HIM FEEL BETTER, IT GOES WITHOUT SAYING FOR MOST KIDS, BUT MY SON WHO HAS AUTISM USED TO WANT TO BE ALONE IF HE WAS SAD/ HURT WHICH WAS HEARTBREAKING, SO IM HOPING NOW TO KEEP BUILDING THIS SKILL ALONG WITH HIS EMOTIONAL REGULATION SO HE CAN BECOME MORE EMOTIONALLY ADJUSTED, AND KEEP MOVING FORWARD AT OSCARS PACE💙