Wednesday, May 6, 2015

autism not once, not twice but 3 times a bastard


How the hell did I get here, how???????

Suppose I can only start from the now and work backwards as I need to remind myself let alone explain it to yee.

Today May 7th 02.18am, yes 2 am, ffs what the hell am I doing awake at 2am, well insomnia seems to be back in full swing, back for some shits and giggles cause hey life isn’t tough enough eh?

I’m going to lead you into a piece of my world, not my inner most’s but my public life, the shattered, drained, mum of 5 kids, of whom 3 are autistic. Yes Autism strolled into my life for the first time 7 years ago, well 8 but that’s a long ass story in itself so we’ll go with 7 for now. It came again 2 weeks ago for a 2nd time and now again a week ago for a third and what I hope the final time.

I’m truly heartbroken but yea we survived the last 8 years surely we can survive another 8, but more stressful as we have autism times 3 now. I remember hearing thing 2s dx, which was hard but expected kind of, the severity not so much but the area of dx, yes.
I thought she flew her assessment, I looked at hubby and said, Jesus she done brilliant, maybe they’ll just say global developmental delay again, and we’ll be fucked for services. The assessment lasted an hour, they blew bubbles, asked her to play with toys, observed her behaviour and attention, interaction, communication, balance like walking etc eye contact, independent skills, social skills yada yada  my nerves where everywhere, I felt sick all that morning about it.  You see in this lame ass country services rely heavily on a dx, you don’t want a dx nor do you care what your child has but for services, you have to care a little.  Certain dx means set in stone services while others can place you in the unknown that is primary care; no one wants to be there.  We anxiously went in to get her results. 
So we went in thinking one thing and came out upset thinking another, you see I thought worse case would be autism spectrum disorder, we where told she was autistic and the severity of her delays would be enough to dx intellectual disability also.  What, for real, what???
I cried a little although silently, I don’t do the hand me a tissue cry or blubbering mess cry.  I do the composed yet tear slowly running down my face cry. I challenged the ID dx but was shot down.  The good news though was that it meant placement in a new early intervention unit attached to a mainstream school close bye, it already had a classroom in operation but is expanding.   
Hard to believe there can be really good news with really bad news but there you go. I really think she has, is and will be very well looked after by the early intervention services team and so lucky to have been dx so young,  You see I had some suspicions at 4 months something wasn’t right with the twins, at 8 months I was positive so I placed them on an assessment of need observation
The government take your application, assess it, decide what’s the best thing for your child, assess your childs  multi disciplinary needs and give you an idea what’s wrong, they than continue to assess your child and have regular meeting as a group about your child to than leading to if your child has a dx, additional needs or is fine (well that’s my brief understanding a
and outline of it, I could be very wrong, but that’s how it went for us)    

So that was Wednesday, skip forward to the following Monday, round 2 yeeha only this child, haha thing 1 ain’t nothing like the gentle
thing 2. So the exact same thing, nothing different, their watching all the same things like they did the last day.  I looked at hubby, now he was truly flying it, almost made me out to be a liar at times.  I said to hubby while waiting for results, ah shit, they’ll end up separated for first time ever, she’ll go to the EI unit and he’ll go to a EI pre school, ah I got sad as they’re never apart. 
So in we went, and boom, slap, bang, what??? No you’re shitting me, no way??  Yes the very same, autism with intellectual disability based on severity of developmental delay.  Floored. I got a bit stuttery, I asked surely its pddnos, asd, she said no were confident to call it autism with ID, Now I was upset, I really wasn’t expecting this, I thought he was miles ahead of his sister and that he just had a speech delay, I’m really shocked, We got into the car and I cried, could not compose myself at all.  The only positive I could find,
He’ll attend the very same place as his sister.

I looked at hubby, I need to shop and he was like what?  I said I need to shop, I went and bought their school uniform and school bag’s, ok this shit got real, and look yay me, I’ve accepted and I’m dealing.  Job done, ready for the next step, their going to school. 
We get to talking. Wow they will be in school till 2 pm, are we going to finally claim some life back?  We talked about child care costs and how we will no longer need to pay a crèche (they go 2 days a week at a cost of 120 per week), we talked about how we will cope without our weekend (our weekend is a Monday and a Tuesday as we have no kids till 6pm both days as all others are in  after school, or nyp/inhome) oh but G I need my down time, G was like yea but they in school till 2 pm, I’m like yea but, he was like hello the amount of money we pay out a week on childcare, (40 for R 190 sometimes a lot more for L and 120 for the twins) we could finally have some cash in our pocket for once, hmmmmm I’m undecided, that discussion is a to be a to be continued G, sanity over vanity and money if you ask me but I see his point, we do need a lot of things fixing and to get some emergency fund money saved back up, L used it all up last year with his master of destruction phase, 


So that was the last 2 weeks, add to that the vomiting bug times 6, insomnia, allergy and asthma attacks and pure exhaustion and that covers this week and last week all at once.  
and its now 4 am and i'm still wide awake grrrrrrrrrrrr

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