Tag Archives: Autism

The teenager.

The thing about raising autistic children, is you can’t expect things to happen quickly, from waiting for therapies to changes in your kids abilities.

But occasionally they will surprise us.

Our big autie boy has hit puberty, and while he doesn’t say much his happy singsong noises are starting to crackle a little. His laugh is that of a teenage boy, all squeaks and pitch changes. I find myself wondering what kind of teenager he could’ve been, and should I be counting myself lucky that at this age he still wants to be by my side?

Then last week I was in his room cleaning his window, while he was bouncing away happily on his bed (this is why he needs a new bed every couple of months). He began laughing quite a lot, which he usually does when he’s done something he shouldn’t and then he shouted “By self! By self!” I asked him if he wanted to be by himself, the response was cheeky laughter but I heeded his request because how often does he actually ask for something with words!?

So there is a teenage boy in the house after all, and he wanted mum out of his room :)

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Filed under Autism, Changes, Kids Say the Darndest Things, Moments, The Kids

I’d like my walking frame in green thanks.

While I don’t like to conform, I think that a 2013 round up post is in order. It’s been a very crappy year, and feel you all need to hear why I’ve been a bit hard to find or get to do anything, or just be anything really.  I’m not quite sure how to lay it all out, an outright tally of the ugly would be an absolute bummer to read, but hey that what most blogging is about? Drama ;)  Although it could be cathartic to unload, out there to the cyberworld. Certainly cheaper than therapy. From what I hear 2013 has been a pretty crappy year for most people I know, and just when one shit event is done with another one comes along.  Karma it seems, has taken the year off.

We all have our crap threshold. However big or small, we all have limits. There is only so much a person can take before they crack  it. I have lost count of how many times this year I wanted to chuck an Eric Cartman, “screw you guys I’m going home”.

Flash back to February when I got the up the notion of obtaining some part time employment, I decided I wanted to be a firefighter. I lost a pot load of weight and got fit, and I got the job.  Dropped a ladder on my head during an assessment, and found out that I have neck bones that will no longer take a beating.  Bugger.  Back on went the weight while I tried to rest it, yeah even the doctor laughed at that idea of me ‘resting’.

Meanwhile I was working on the assessment stuff for our latest autistic addition, the paperwork just gets bigger and bigger as the years go by. I think I spent at six months sorting his stuff out alone. For our very first diagnosis we got one report and that was it, I miss the days when a paediatricians word was good enough.  Also had to get the Future Dark Overlord reassessed so he could keep his place at school.  I really need a PA just to keep a handle on all these assessments and reports for me.  It’s been a busy damn year for kid corro that’s for sure.

And then my doggies died.   Followed by a rather spectacular car smash, in which my mum and eldest son sustained head injuries and end up airlifted in different directions. Thankfully they pulled up ok, the car didn’t and mum learnt a valuable lesson about the insurance (that she really should have had some!).

The much narrower Ford

We carried on. We kept seeking out the good stuff. Taking the kids camping and looking for the fun stuff. As far as the kids are concerned this has been a rocking year, thank god the parental smoke screen is holding.  We even adopted another dog, a Greyhuahua (which is totally a real duel breed name).

And then I got sick.  Really sick with an antibiotic resistant infection, after being treated with the biggest anti’b tablets you’ll ever see I slowly got better.  But, and you saw that big ol’ but coming didn’t you, the treatment damaged my hearing permanently.   So before I turn 40 I’m wearing hearing aides, yes that deaf.  I knew I was having trouble hearing the kids, but I thought that was only because they all have to talk at once.  Interesting side note here is my audiologist can download the levels of noise I am exposed to while wearing them, she said she has never seen any patient with so much everyday noise. She no longer scolds me for not wearing them as much as I should.

In the background leg work for my autie kids continued.  Never ending and always keeping me busy, how did I think I was going to have time to do a job?!  I don’t think I can adequately convey just how much ‘stuff’ my kids generated this year, it was almost overwhelming.

We decided we needed to relax, the worst was over right?  And we went over to the coast and one day we had fish and chips at our favourite take away.  When I had an allergic reaction to fish. Having never reacted to it before, I was unprepared but lived to tell the tale.  Remember the big ass antibiotics?  Turns out they’ve messed with my bodies ability to process histamines and a whole bag of other really awesome foods.  Suddenly I can’t eat a lot of things. So I now have an audiologist and an immunologist. Uh huh.  But it was this or kidney failure, so you know…

Just today I bought myself some glucosamine for the arthritic joints, and made a mental note of what colour walking frame I’d like. A green one in case you’re wondering, it would’ve been red but that colour just gives way to the expectation that I can go faster and you and I both know with my luck I’ll have a hip replacement next year.

As a sense of normal finally seemed to settle on the house our eldest autie boy decided to spice things up with a seizure. A big one. So big his heart stopped. We are racking up the frequent flyer miles in the careflight helicopters.

Getting ready for his airlift. Poor Tom.

The pilot remembered us from the last trip, he didn’t even have to tell me how to work my headset. This time I kept my phone handy to take some aerial shots, as you do.

 

It had been a year exactly since he’d had one, so I’m not booking anything for this coming september just in case its a seasonal thing ;)   It took about a month to get him back on track and we are continuing to treat it as a seizure disorder.

We got home from the hospital just in time for the Husband to fly out to Vietnam, as it is his turn for a holiday this year.  Probably a good thing it was his turn, because I’m pretty sure had I had some plane tickets, you may not have seen me on these shores again for some time.  But things did settle, aside from the usual chaos, and we set off on holiday to celebrate fifteen years married. Rented ourselves a flash beach house at Narooma, and quite probably had the best time we’ve had all year, even if we did take all the children ;)

We saw a seal colony for the first time at Narooma. Loved it!

The very next day after we get home, I had a head on car smash with a lady who had decided to drive off her face on drugs, past a school.  Probably a good thing she ran into to me really, but still I really didn’t need my new car written off or my shoulder all hurty.

MY BABY!!!!

While the car was insured and replaceable, we encountered untold drama getting the paperwork sorted.  If something could be sent in the wrong direction, it would be. But the biggest drama was our autie kids dealing with the car being gone, I didn’t expect them to cry for days about it.  In the middle of all this drama, the Husband received an award for Life Saving from the Governor General, and we’re all just a little bit proud of that. And my eldest made it through his first lot of army training and is now an official soldier, I’m very happy he is such a together kid who reminds me everyday just how old I am getting.

My big boy :)

A month on we finally have cars in the driveway and money back in the bank, a very trying christmas looked to be on the cards.  However the one intelligent thing I did this year was lay-by the kids christmas gifts in March, Ms Santa came to one and all.  Even if she did get the parcels in the post a little late ;)

Our crowd, sans my eldest.

Now here we are it’s new years eve, the end of this yucky ass year, but we’re still all here!  I have expectations of 2014, and while they say expectation is the root of all disappointment, we all need to have something to hope for right? Even if it’s just for the year to be a none event.  So if the apocalypse could just hold out until 2015 that’d be great, I’ll be too tired to deal with it next year.

I’ll leave you all with this quote from Doctor Who to end the year on.  I think it fits us nicely.  Thank you all for reading this far, and to those of you who have supported us this year we thank you xxx

I'm sorry I don't know who to credit for this, please let me know if it's you're fabulous drawing.

It hasn’t been all bad, just bad enough to keep us too busy ;)

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Filed under Autism, Complaints Dept, Health, Holidays, Husbands, Rants & Stuff, Too Much Information

Feeling blue about Autism

It seems I’m not the only one feeling a bit cynical about Light it up Blue for Autism today.  Especially given the amount of money raised specifically just to light buildings with a blue light, AND doing so is apparently meant to make us autie parents feel better, less alone and the world better informed.

The autie mum in me is all for the Autism Awareness awareness campaign, I really am I WANT to be shaking that tambourine and I usually do.  Last year we raised $600 for autism awareness, but as someone who is always desperately clawing for services seeing money obviously wasted shits me, especially such a large sum (40 grand if you haven’t clicked the links above)  I think we can all come up with at least 20 services that the money could’ve been spent on.  Wouldn’t it be fantastic to see such crowd sourced fundraising enthusiasm for other causes?

Autism awareness campaigns are necessary. I deal with ignorance from somebody every other day, and not just from strangers, friends and family too.  Autism isolates families.  However I have always felt the people that are unaware of what autism means for a family or child, are people that we don’t need to have in our lives.

Here is my symbol of Autism, my four autie babies :) I decided that they need a rainbow instead of being blue, because they’re anything but blue.

My rainbow picture of what autism means to me.

So while the parents of high functioning autie kids get to go to balls and dos tonight, sans kids because they CAN get someone to care for their child.  I hope they spare a thought for us autie parents with kids on the other end of the spectrum, who are sitting at home with their non verbal and incontinent teenagers, scrubbing poop out of the carpet for the third time today.  Put that on a flag and wave it.

If you wish to help out an organisation that provides services for Autism, head to ASPECT and check out their fundraising effort.

Some of you reading will disagree with me, and feel that the blue lights are important, and to those who hold that sentiment I have no doubt it is important. To you.  I don’t take issue that awareness is not important, I just snapped at the cash wasted on brighter lights than those offered.  That 40 grand could have sent a lot tired autie mums to a spa for the day… just saying ;)

To all my friends who lit their facebook pages up blue, wore blue, shared awareness info, had blue lunches, and blue events today, lit their offices windows up blue tonight, I thank each and everyone of you for taking on the cause.  Don’t let my crankiness dampen your enthusiasm, I am really grateful you care.

I will continue my autism awareness campaign right here on my blog, and hope that whatever I spew out into written words can help someone know that they really are not alone, because unlike a blue light you can reach out and contact me.

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Filed under Autism, Rants & Stuff

Back to Reality

In mid September I nicked off to China, for a much anticipated much longed for much needed, trip away on my own.  Time out for mummy. For the first time in probably a decade,  I shit you not I haven’t had time alone for more than a few hours for years. But before I get into that and bore you all with the some 2000 photos I took, let me tell about my homecoming.

I hopped off the plane from China and straight into the car to head to the South Coast to enjoy some beach time with the kids for the rest of the school holidays.

However four days later my holiday looked like this…

That’s Tom underneath all that equipment, with a ventilator helping him to keep breathing.  How did this happen?!  He woke up as usual all smiles at stupid o’clock, and annoyed us for his iPad and something to eat.  Next thing we know he is having a seizure which lasted an hour.  It took half and hour for the ambulance to arrive, and in that time I had all manner of scary visions of the state of health of the boy who may emerge from the seizure.  We did not see this coming.  He had not been unwell at all, and only the day before we hit the beach. There he is doing his little autie dance in the water.

How did we get from that to this?  He had a big response to anti seizure medication which meant his respiratory system shut down.  I had an agonising wait with him being manually ventilated for hours in front of me at the hospital, until the chopper team arrived and they took over with better equipment.  For the love of god will someone do some fundraising for Milton Hospital?!

Thankfully he has come through it all, and is seemingly his usual self.  I have to tell you I was scared for him.  I worried that he may have brain damage.  I worried about his future quality of life, considering it isn’t that great in the first place, what if it made him worse?  After a while he came good, and he had a mountain of tests while he was unconscious.  The result of those tests?  Sweet fuck all.  Yeah, nothing.  There is nothing they can find that may indicate anything.  So yay for no illness or whatever, but what am I supposed to do with that?  As a precaution he is being medicated as if he has epilepsy and we wait and see if he does it again.  He is back at school and under close watch, keeping me nervous at night for a while too.  So much for this mummy going out and getting a job any time soon :(

I finally made it home a couple of days before school went back, and only just unpacked my China shopping three days ago!  It feels like an eon ago that I went away.  I feel like I need another break, but it seems it all goes to pot around here when I leave (but that is another story).

China story and pictures to come.  Soon.

 

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Filed under Autism, Health

Canberra Fun Run

They made it!  Thanks to everyone who sponsored Toms effort, he made it past his goal of $500 and raised $620 for Autism Awareness.  How good is that!?  He had a very enjoyable day, trotting his way along the five kilometre course in his own way at his own pace.  The crowd at the start spooked him a little, and he never let go of his Dads hand the whole time, both enjoying the time together a lot.

Thanks again to everyone for their enormous support, and to all those around Tom got who involved and helped him get prep’d for the day, we were really touched by how much everyone cares about our boy.

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Filed under Autism, Awesomeness, Moments, Mr Candy's Family