Tag Archives: changes

When will it sink in?

 

A bad day with darling boy, something happend this afternoon and he became utterly uncontrollable. As his parents we have been under immense pressure this past fortnight, living at the whims of other people, money, work, weather, whatever it’s not important. What is important is how we dealt with it. That is to say not very well at all. But it’s created a need to try and process it so I can hopefully get some sleep before work in the morning.

When you’re handed a diagnosis of a young child, sometimes a baby in our case a toddler it can be overwhelming, daunting, frightening and a host other negative emotions but really if you’re taking about an autism diagnosis not much changes to begin with.

Sure a lot of things make sense, you begin to understand why, you have a reason or an excuse for so much, but other than a series of meetings if your child is under 2 there’s not an earth shattering change to your life. They still need to be fed, and have their nappy changed, you play and teach and put them to bed and hope to all things they’ll actually sleep much like any other kid their age.

The insidious nature of darling boys variation of autism means it takes a while before it dawns on you, the enormity of life as you know it. When they’re 3 and off to preschool and lining up the crayons while their teacher aide tries in vain to get acknowledgement. When they’re 4 and the goal for the year is to touch a piece of fruit at snack time. When they’re 5 and supposed to start school but you’re waiting for funding applications. When they’re 6 and still pointing to everything they want because there’s no language yet, When they’re 7 and you’re wondering if they’ll ever be toilet trained and what are you going to do when they no longer fit the cheap nappies. When they’re 8 and they’ve never been to a birthday party and have no idea what Christmas is. When they’re 9 and still watching Bob the builder and Thomas the tank engine. When they’re 10 and you can’t remember the last time you had a night to yourself because they no longer sleep. when they’re 11 and refuse to wear clothes around the house. Gradually year after year it’s reenforced, but still the enormity of life to come doesn’t quite sink in.

As he gets older the gap between him and his peers grows and we begin to really feel the massive weight that is raising a boy like Boo. Or nights like tonight when the last thing we had time and energy to deal with was him, being…him. We needed a nice quiet calm happy self involved child that was perfectly content to watch little red tractor on 4 different screens at once so we could prepare for a house inspection in the morning. What we got was a screaming, out of control, hyper-manic, over-demanding, rage monster that smashed through the bathroom wall we had fixed only hours before. Because the dog touched him.

We needed someone to, take him for a few hours or somewhere to send him just to get the jobs done, if only he could have gone to a friends house or hung out with an Uncle or Aunt or Grandparent even. Kids his age are going to the movies or the swimming pool by themselves. That gap is right there, it’s in our face screaming. Your kid isn’t like other kids. Seeing, watching, hearing. Your kid is different

There’s no time for bitterness, and no point. Sadness yes, but envy, jealousy? No. I don’t know what shape life is forming into, I can’t quite make it out I’m too busy sculpting it.I can guess how it will look, but life has a habit of changing the game before you even see it coming. Sometimes good, sometimes bad, but it’s never what you plan for it to be.

But we’ll ride it together, darling boy and us.


I ain’t dead……….yet

Been a while, a long while actually. there is a reason and some day soon I may even share it but in the mean time life carries on. Autism is still our faithful friend. The great autistic one is now 8 and 1/2 and still basically the same. We brought our first car some almost 4 months ago and we’ve racked the the mileage or as we don’t say in this country the kilometerage driving here, there and every freakin where.

For reason I choose not to divulge yet we had to take a long trip recently. Now where I live in little bitty ole N.Z. we are a 2 island nation. And by that I mean while yes there are other islands dotted around the place they appear to be inhabited by strange people with not enough teeth and a unhealthy interest in hemp clothing and the native wildlife so “we” like to pretend there are only 2 islands. As we’re such creative folk here we have really stretched the ole noggins and called them the North Island and the…………….wait for it………………….South Island. Pretty impressive huh.

SOOOOOOOOO anyway a couple of months ago we had to travel from North Island(where we live) to South Island(where we used to live). We drove I don’t know why, I guess we’re just sadists like that. Anyway it’s a reasonably decent drive it takes about 12 hours in total and 3 and a half of them are on a boat.

yep a boat. Autism on a boat. It was ………….interesting. Flapping on a boat takes a skill set little dude sorted in fairly rapid fashion

The Cook straight is reported to be one of the rougher ferry crossing in the world. Now I can’t say for certain if that the case and don’t see the need to test the theroy.

The trip was great bouncy in an up and down rough water kinda way. Flapping while spinning while boat is rocking, little dude spun right into the boat wall??? Anyway is was metal there was an impressive boing!! ANd he just shook himself and carried on spinning.

Ultimate dadda and I found our selves saying such gems as “no, no licking the boat” yummmmmmmmmm salty goodness. “no no looking under the doors” we had the good sense to hire a privet cabin for the journey and little dude discovered there were gaps under all the doors. “no,we don’t sniff  him” in the car deck little dude took a fancy to the dock worker that was directing passengers to their cars.

While we were away we stayed with little dudes grandparents that haven’t really seen him in years. They were impressed. And awesome.

The reason we were away wasn’t pleasant but the actual travelling made it better.

One day we might even do it again for the right reasons.

Peace.


Rules of engagement.

How can I understand the rules if I don’t know the game he’s playing.

You hear all the time about autistic kids and how they are “resistant to change” and they like “order and routine”. Here’s how that translates in real life.

#1 When out and about in town staff must go to shops in order. There can be no deviation in the order. Any changes must be approved by management first. (Management will not approve)

#2 Upon entering the mall staff must proceed immediately to the food court for chips. 

#3 When entering any store on the approved list staff are not permitted to browse in any section other than the preschool toy isle.

#4 Sandals and shoes must be removed while sitting on the doorstep. NOT the front step. NOT the hallway. NOT the lawn. NOT the porch. The DOORSTEP ONLY.

#5 Do not presume management will be liable for any messes incurred herein and forthwith. Staff must not approach about any mess inquiries. Up to and including those of a “downstairs” nature.

#6 Staff are not permitted to eat any non-prohibited food without first offering a tithe to management  If this results in the loss of the entire slice of cake, sandwich, glass of orange juice etc etc management will not be open to negotiation.

#7 The order is pajamas  THEN a lap of the hallway, THEN teeth, THEN a lap of the hallway, THEN goodnight to mumma. Know the order, live the order or else….

#8 It is NOT permissible to enter the supermarket without a plan of purchase that includes either a cookie OR an ice cream, Both is preferred. 

#9 Management can not be expected to operate any previous set routines without prior and express directions from staff at all times, including but not limited to opening doors, turning up the iPad, removing socks, touching books and restarting dvds.

*sigh* “resistant to change”

peace

 


We return you to your regularly scheduled programm

A break from blogging for a couple of weeks. I actually got to have a few days away from Planet Autism. I visited an old friend I haven’t really seen since B.D. (before diagnosis) and it made me ponder about things.

In our house we don’t really age. No that’s not right it’s hard to quantify the words I need here(it may have something to do with the young flappy gentleman in the next room squealing and demanding cheese).

I feel like the rest of the world around us is changing but we’re still chugging on at the same point we were 3 years ago, 5 years ago. Most of the people I consider true friends have kids, and we sit on the sidelines of their lives watching their kids, grow and change and become the people they will be as adults, but we’re stuck back here, watching baby Einstein dvds and learning to point and pee. I mentioned this briefly in another post you can read it here https://askewedviewed.wordpress.com/2012/12/06/its-the-little-things-apprently/

As a couple, ultimate dadda and I we have VERY few friendships, maybe only 4 or 5 singles or couples we would count as close friends(people we’d make an effort to socialize with) and another dozen or so folks we share aspects of our lives with. I sometimes feel like I’d like to be closer to folks, have a “pop around for a coffee” type of mate but then I quickly come to my senses and the sensation passes.

One of the reasons is self preservation  you see as their kids grow, mature and develop as adult humans so too to their parents. Their lives start shaping in different ways, they update their wardrobes, develop new hobbies and interests change the house around to take over the kids rooms, get work, change jobs. Basically they become different people. They start sharing joys about kids getting jobs, moving houses, having relationships.

And yet here we sit, still watching bear in the big blue house, still changing bottoms, holding toothbrushes, picking out clothes. We still count all the soft toys, have ice cream for breakfast and leave the house exactly as it is. And I don’t know how to keep sharing the same stories.

I don’t know how to answer when I’m asked “hows he doing” I don’t know how to not feel jealous. I don’t know how to not talk about autism.

So I worry that it’s makes me an annoying friend, a whiner, a drag, I worry that a friendship with me is one sided, boring and uninteresting cause there’s nothing new going on. So husband and I keep our distance from people, mainly because with most folks including a few we get on with we no longer understand their motivations. Perhaps we view them as selfish, not realizing that without autism we’d be like that too. I don’t know

But I do know that we are here doing the same things we did last year and the year before and the year before that, and if you come and check in with us in another 3 or 5 years we’ll be doing the same things. Watching the same dvds, playing with the same toys looking to make the same leaps forward. Sure the setting might change, perhaps we’ll move house, update the furniture, hell maybe even graduate to owning a car, but fundamentally we’ll still be parenting a toddler.

There is a great deal of peace to be found in that idea, so don’t get started on the sympathy. Sure we’ll miss out on some things with our guy, his first job, his first girlfriend, moving out. But here’s what you forget, no panicked phone calls in the middle of the night because he’s too drunk to get home safely, no worrying because the girlfriend skipped her period, no going out and getting a fight, no drugs, knowing that he’ll never make a dumb decision and wrap his car around a tree He doesn’t want the latest shoes, jeans, music, gadget, car, whatever.

So I’ll gladly trade those worries for toilet training, learning to use a spoon and watching the same 12 dvds for the rest of his life.

Except JoJo’s circus. I hate that friggin clown

Peace!


It’s the little things………………… apparently

My blogging has fallen off of late and I finally figured out why. I always hoped that this blog would remain funny light-hearted full of jokes and laughs and a place to share our family’s irreverent view of how our lives are affected by autism.

I’ve always tried and sometimes failed to never get bogged down in the “woe is me” category or even worse “look at me my kids got issues worse than your kid”

But in saying that our son is very very unique. He is as far from a typical kid as a poodle is from a wolf. Members of the same species perhaps but that’s about where it ends.

Our son is also handsome, and I’m not the only one that thinks that he truly is a cute looking kid and he has a weird sorta charm about him. People are drawn to our boy, they come into our house and are fascinated by him. I can count on any post/photo/video of him on facebook garnering 3x-4x more comments and likes than anything else I post.

So on that note perhaps an update on Boo Bear as he’s called here and other places too.

Boo will be 8 on Monday, that’s so weird for us! He doesn’t seem to age like other kids do he hasn’t really changed much in several years he’s much the same now as when he was 4. He’s still playing with the same toys(we’ve replaced them a few times though 7 year olds are very hard on toddler toys) that he’s been playing with since he was 2. Watching the same dvds that he did then with some new ones thrown in. is favourites remain with baby einstein, thomas, blues clues, mickey mouse leading the way. He still has many of the same books on his bookshelf. He’s still not toilet trained, not eating any better, not responding any different to things that set his off and he still doesn’t sleep.

But some things have changed. He can use a 4 or 5 word request. He CAN but doesn’t mean he wants too or does. He can put socks on now and his shoes too. He will go and have a pee if you ask him most of the time. Certain folks would argue all of the academic progress that’s been made, but honestly I don’t really care about those, they aren’t ‘useful’ to us. He still can’t consistently respond correctly when people ask what his name is. Ask him how old he is or where he lives? You’ll get nothing, maybe a hummmmm or a “dadda” or even Caribou. So pardon me if I don’t rejoice that he can correctly identify biggest to smallest. Or skip count to 20 or write a sentence on the computer about monkeys, bananas and ice cream.

So folks coming into Christmas or whatever this time of year means to you, be thankful for the little things. When your kids are bugging you to buy the latest toy/game/clothing whatever be grateful! Boo doesn’t know Christmas is coming.

When the kids wake at 5am cause they’re so excited to open presents. Don’t bitch and moan. Be grateful. Boo wakes at 5am most mornings and he doesn’t expect presents.

When the kids come to you the day after Christmas whining they’re BORED, be grateful! Boo doesn’t know what bored means, he doesn’t understand and he can’t tell me.

I know these holidays I’ll be grateful. Grateful for all my children, living with me or not, missing me or not. Autistic or not.

Peace!