Friday, March 23, 2018


Yep we all feel it , special needs parents especially

There is so much to our one day than you could ever imagine

It typically starts at 2 am for us, sleep disorder in special needs children is quite common, while there are medications to get your child to go to sleep there aren't really any that keep them asleep

Mornings are hard, its quite stressful to seperatley feed 3 autistic children who hate the noise of each other, that's great craic all together, there is a lot of crying

Than just dressing 3 hyper stubborn children, its like trying to wrestle crocodiles

Packing bags, lunches, giving meds

So your already tired and drained before the school bus even arrives, then it's the mundane house work or appointments

Then home for 2 to meet the kids off the bus then homework, dinners, after school activities, showers, ready for bed routine

It's a horrific stressful day from start to finish, there can be several tantrums and meltdowns in between, and that's just the adults lol. The bed refusals are hard too, preteen does this a lot, sometimes your up till 11 waiting for him to nod off and you can't go to bed till he is asleep, that's also getting difficult especially when you know you will be up at 2am
That's a pure killer

Phone calls and paperwork can be quite daunting, the paperwork is the one I find hard because I'm so bloody brain tired
Trying to keep concentration and remember dates and hours and dates they did this that and the other, I can't remember yesterday in fairness

Social welfare forms are the worst, that drives me silly as requires gp signature, consultant signature, photocopied reports, form chasing
Some forms can stress you out so much you can go into a fit of utter rage and wanna just tell them exactly what you think of them  and where they can stick their form, I have done at times too

I hate being denied something i know my child is entitled to, that really winds ms up, so your leaft writing an appeal, more paper chasing, Dr chasing, signature chasing, photocopies, then you win, why, why put a parent through that bull shit.  I am the kind of parent who won't look for what I don't need, but will look to get everything they do need, and I'm like a pitbull fighting for it, but if I know I don't need something that I could be entitled to, then no if I don't need it I haven't the time or patience to put into looking for it

I've had many a form and application almost send me demented and you kinda turn into a psycho as your that riled up by it, it can make you very anxious and depressed also as it's always a battle and waiting game
You are anticipating bad news or them needing more info, and you are more times right than wrong

Appointments can be good or frustrating
Drs mostly on our part listen and are very helpful as are therapists and teachers but then you get one who might just not really listen and offer you useless information or ask you to try something that's impossible to achieve in your  families circumstances, and you just want to thump them.  They heavily rely on their books for answers not their brain.
I hate these people
Autism is not written, it is felt, experienced and  witnessed, you can not learn from a book

I'm living with autism a long time and even I'm no expert and I'm still learning
I know nothing yet I know something
Every day you learn something new in this life
But at times you feel you know more than the supposed expert your sitting in front of and your baffled at their ignorance and lack of common Sense

Not all are like this and thank God I've come across very few but they have upset me greatly when I have encountered them, which I always write my letter of complaint to the head of whatever and ask for them to be removed from my child and my family as I am entitled to, and yes they get removed as I won't drop it till they are gone

No one and I mean no one needs to put up with that bullshit on top of everything else they are going through
Always take up the offer of social workers if they are offered with your services, never fear a social worker
They are your back up voice and support system, I am in awe of my children's social workers and all they do and put up with
They are amazing

Always remember you are your child's and families voice, if your not happy and you feel angry, make it known, do not take it, stand up for yourselves
You are your child's voice and advocate

They can't help if they can't hear or see you

Yep angry
We all sure do feel it don't we

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