Saturday, 5 October 2013

Our Time Will Come

I love my life and I'm thankful for all that we have, but that doesn't mean that I don't feel a little cheated watching all of the happy families on their holidays on my newsfeed today. I know that things will get easier and our time will come, but today it just hurts.
I posted this on my Autism Bubble Facebook Page today in the middle of what amounted to a pretty impressive pity party. I'd already started writing this post though it's taking a bit of a different angle now, and I meant it. I do love my life and I am grateful for all that we have.
I swore at the start of the holidays that I wouldn't compare our lot to that of my friends' because our world is beautiful, just in different ways. I promised myself that I wouldn't let myself be dragged down by my newsfeed full of smiling families at the front of theme parks, of the updates saying how much fun they were having, nor of the "I'm so exhausted, what a huge day" posts and pictures of their dinners out each night. And I wasn't. I was actually enjoying the posts and interacting with my friends who also work hard and deserve a great holiday. 
But today it all got under my skin. I wanted all of that so badly for my family, and I really wanted it for me. And it hurt. A lot.
It's been on my mind a lot lately that we live in a very different world than our friends and family, and it's something that Daddy and I were discussing just a week ago after a rare night out. My wonderful parents had The Bubbly One for a sleepover so that we could go out for dinner, catch up with some family who were visiting from interstate, and have a bit of a sleep-in to recharge for the week ahead. The night out was fun. The Little One slept peacefully in his pram for most of it and we got to talk, laugh, eat our meals slowly and actually be "present" for a full night's conversations. It's the little things that we have come to appreciate in this life of ours, and those conversations really opened our eyes to that. My husband commented afterwards that he feels like we live on another planet to other parents. His cousins talked of cruising holidays, of new cars, of expensive shoes and clothes, of boats, motorbikes and motorhomes- what my husband refers to as "toys", and what he also gets to hear about constantly in an office full of men without the responsibilities we know.

We have a beautiful home, we live comfortably, though with a decent amount of debt, and we're very fortunate to live in a country with very generous provisions for our son compared to what so many others I know receive. But we've made the choice to have me stay at home with the kids, and on a single income we can't afford "toys'- nor do we have the time to use them. After talk about our new (used) car we were asked about the next holiday we were planning and asked had we considered a cruise, and we changed the subject. Our last holiday was a near disastrous weekend away for Mothers Day, and since then we just haven't had the money (or the energy) to try again. We resisted the urge to school them in how different the autism family's life is. We just listened, smiled and nodded a lot, and afterwards in the car we reflected on our life.

Perhaps it was my resolve to see our blessings, but as I said to my husband that night, and as I posted on my Autism Bubble page, I wouldn't swap. I like my life, even with it's struggles. We gain more satisfaction from a followed instruction, or a new word than I would ever gain from having my nails done regularly. A milestone met after years of therapy will trump drinking on a ship somewhere any day, and seeing our son happy, thriving and learning at his amazing school brings us more joy than any of those "toys" ever could. We will have our time one day. We will have opportunities to travel, with or without The Bubbly One. One day we will be able to afford some of those things. But for now, our family is where our happiness lies, and I wouldn't have it any other way.

Which brings me back to today. I didn't realise what it was that hurt so much, but my husband did. I ranted and raved about how our family deserves a fun holiday too, and he gently pointed out the one that I wasn't referring to. One of the holidays in my newsfeed was some old work colleagues, and their trip was different to the others: No family, no kids, no responsibilities for a few days. A chance to escape our world and just be me. It wasn't the holiday itself that I was bummed about, it was the loss of a part of me. A younger me, and a more carefree me.

I'm okay with not working and having a career (and that was a big ego boost for me once because I was good at what I did). I'm okay with missing out on holidays and material things. But I'm different now and sometimes I miss the old me. I miss being able to hold a conversation without autism buzzing in my head and whispering in my ear. I miss being able to go somewhere and not see every little thing that would aggravate a sensory issue, or automatically seeking the easiest exit should things go badly. I miss the chance to laugh until I cry with my girlfriends and not have to be the responsible one all the time. I miss just being, not doing and not thinking.

Tonight I am better. I sit in the quiet, with my best friend and soul mate snoring softly on the couch nearby as I write, just to be near me. My boys are sleeping peacefully. I checked them a moment ago, and watched them as they slept, amazed that I have been entrusted with not one, but two boys so precious. Our world is different, changed by the little boys we have been blessed with, and that world has it's triumphs and it has it's sacrifices. But we will travel that world with thanksgiving, and one day, our time will come.


Friday, 4 October 2013

"Come At Me"

A couple of weeks ago I wrote a post where I talked about some of the feelings and issues that school holidays raises for me, having a child with autism, severe developmental delays and major sensory issues, and I basically promised myself that I would do better this time round. Instead of getting into a funk around school holidays and being jealous of the world while my boy tries to get his head around the massive change that is no school I would look to God and try to be thankful for the many blessings in my family. I also resolved throughout these holidays that I would write about some of the bigger things that happened, or that were on my mind throughout the holidays, both for myself, but also so that those who follow our story can get a better balance of our world, not just what inspires me to write every now and then.

So, I started these holidays with good intentions, and I wrote about them, which is just asking for trouble. I pretty much waved a red flag at life, and at every sensory issue and behaviour that The Bubbly One has and yelled "COME AT ME!!"; and the next day all hell broke loose. With all of my great intentions I somehow forgot about the obligatory sensory madness my boy immerses himself in on the first Monday of every holidays. I actually jotted down some notes about that day because it was so full-on that even I was a little shell shocked. Other than that one day, our experiences this school holidays have (so far) been overwhelmingly positive, but every holidays we have this day, where The Bubbly One has to come to grips with the idea of no school and to cope with that he unleashes his sensory arsenal. It's pure chaos for the entire day, and by the time we've recovered something great's happened and I'm writing about that instead.

So before I move onto the rainbows, here is the storm that was the first Monday of these holidays:

2:30am: The Bubbly One wakes up. I'm woken by the sound of him banging on the wall. Sometimes he will go back to sleep once he has one of us beside him so I hop into bed with him. He thrashes around, babbling and agitated. He bangs the wall, then he begins to hit his forehead with his fist while not quite screaming, but close to it and still loud. I stop his hands and ask him what's wrong. He screams and hits at me. I take his hands again and ask him to lay down and he does and starts to fall asleep as I sing to him and hug him. Then he bolts awake and the hitting and banging begins again. This repeats a few more times and after 20 minutes he's not settling and is getting more worked up, so I give him another dose of his Catapres like his paediatrician said we could, and some paracetamol in case he's in pain because he often can't tell me when he's that agitated. The screaming turns to whining and the hitting turns to bear hugs and kisses with an occasional hit until it's like a switch is flicked, and he crashes. I get back into my own bed at 4am and The Little One wakes up. I'm semi awake still so I figure this is good and we'll get a sleep in tomorrow. I feed him and he goes straight back to sleep. Such an easy baby this one!

6:30am: Daddy kisses me goodbye and tells me that The Bubbly One has been awake since before 6. I go the lounge room to find him watching "Shrek" with a mountain of shredded paper around him. The Bubbly One used to be a smearer (I say "used to" with SO much hope that it doesn't come back), so ripping every piece of paper, cardboard or plastic he can find is annoying but tolerable compared to this. I make coffee while he shreds more. The movie is five minutes in and then he's dragging me to change it. We were excited about him changing DVD's for a day or so because he'd watch the same thing over and over for weeks on end sometimes. Then we discovered that the rapid changing of DVD's was so that he had access to the colourful covers and inserts. It seems that the newspaper he was allowed to shred wasn't good enough. It HAD to have The Wiggles, Sesame Street or one of his other favourites on there. So I redirect him from the DVD player, and it starts:

Slamming doors, banging the walls, yanking out the cutlery drawer so that the contents crash to the floor, banging the dining chairs against the table and tiles. Upending the baby swing (it's empty- he doesn't hurt his brother, thank God) and slamming the frame into the wall repeatedly, pushing the TV back into the wall. All while crying and screaming loudly and hitting his forehead with his fist or iPad in between. Then he finds a scrap of paper and he retreats to the lounge to shred it.

I make his breakfast thinking that perhaps with some food in him he'll feel better, or at least be distracted. I hear him jumping on the couch as I do it, and pulling the vertical blinds from their fittings one at a time. Before he is allowed to eat his breakfast we put them back up. I feed The Little One breakfast and gulp down my cold coffee.

7am: He doesn't want the toast he chose. He's in the fridge, slamming the door back against the wall, opening and closing the door, each time looking for something that clearly isn't there. I ask him to show me what he wants and we also check the fridge in the garage. Again, whatever he's thinking of isn't there. He goes to the toy cupboard and points to his magnetic numbers. I get them down and he dumps them out on the floor and begins chewing on them. Redirection to put them on the whiteboard earns me a few thumps and slaps to my back when it is turned. It doesn't hurt particularly, but I worry for the man he will become, and for us if he is still prone to lashing out. He stops hitting me when I tell him "gentle hands" and again hits his forehead which is growing red. I have a flashback of seeing his friend at school doing the same things. Learned behaviours are one of the pitfalls of his otherwise amazing school.

It's about holidays, I know it is. He misses school and he doesn't understand why he's not getting ready. I go through the social story with him again. He takes it off me and throws it in the bathroom, slamming the door (he used to throw them in the toilet so this is progress). He begins to spit, and it calms him a little. The spitting started after he had his tonsils out and he had a bad taste in his mouth. Then he lost a tooth and spitting through it was fun. So he spits over and over again, wiping it on his sleeve until his chin and cheeks are raw. I try to redirect him to spitting in the sink, to spitting water in the bathroom, but it's not the same. He rediscovers his breakfast, gives me a new DVD (I hide the cover), retreats to the lounge and eats with his iPad.

9:15: The Little One goes down for a nap. I call my mum hoping she can babysit him so I can take The Bubbly One for a swim and hopefully calm him down. I also want to take him for a drive past school so that he can see that no one is there as that normally helps, but I need petrol in the car and I can't do that safely with him in this mood. Before I can ask she tells me of her plans for the day so I forget about that idea. I shower quickly and can hear The Bubbly One banging something over the water.

I throw on my robe and run a bath for him in the hopes that some splashing and playing with shaving cream will help.  He takes off his clothes without a drama, but baulks at getting in the bath. He'll only stand in the water and screams and hits when I try to wash him. I prompt him to get out and he sits, so I go to get a towel. He's out again when I return so I dry him and let him run while I get clothes. As I put on his pants I realise that his leg is wet again, and I look down to see the puddle on the tiles and his foot stomps in it over and over. "Wee" he says, and he begins to spit and wipe it down his clean arm. I clean up the floor and go to get his toothbrush. I feel something between my toes in the bathroom, and yep, there's a small nugget there which he obviously threw from the bath while I got his towel. As I finish dressing him I hear The Little One wake up again and I feel guilty because all I've done with him is feed and change him in between dealing with his brother.

10am: I give The Little One his bottle in his room where I cuddle him and talk to him, and all I can hear is bang, rip, rip, riiiiiiip, spit, bang, bang, riiiiip. I realise that the bang is the sound of the DVD cupboard which he's learned to open and the ripping is the rest of the DVD cover inserts that I'd saved. I resolve to buy a folder for the DVD's and just get rid of the covers the next day and to take the boys outside as soon as The Little One is finished.

10:20: I realise after about ten minutes that it's quiet and I exhale, not realising that I've been holding my breath (I do that a lot and clench my jaw when I'm stressed and holding it in). I change the Little One and come out to find The Bubbly One sitting angelically on the floor, not up to anything apparently. I put his brother on the floor and go in search of advil and breakfast for me. I can't be bothered making toast even by this stage so I make a meal replacement shake so I don't eat crap all day when I'm finally hungry. I tell The Bubbly One that after I make my milkshake we'll go outside (he has to be supervised or he throws things over the fence and has a tendency to fall off things and hurt himself due to low muscle tone).

The Bubbly One then comes in and starts pulling on my arm to go outside NOW and I see that he's chewing something florescent green and shimmery blue. He won't show me what it is and runs away laughing and chewing madly, so I give chase, catch him and pry open his mouth. It looks like a fish, but it's squishy. Actually it's a squidgee- a fishing lure, or part of one. I find the three prong hook about a metre from The Little One on the floor (and grow a few more grey hairs) and the rest of the "fish", and I find the rest of the pack of them attached to a fishing DVD in the DVD cupboard I'd heard open earlier. By this stage The Bubbly One is throwing yet another banging, hitting, screaming tantrum over the fish I won't let him choke on. So I grab my shaker and open the door to go outside so he can blow off some steam.

Then my neighbour starts their chainsaw.

I stopped taking notes after this, and two weeks later I can't quite remember the details of the rest of the day, though I do know that the chainsaw continued through most of the day and that I ended up putting the boys in the car and taking a very short drive just to get out, while watching the petrol gauge get lower and lower. I chased my tail a lot and I chased The Bubbly One a lot, but because he was afraid of the chainsaw his behaviour did slow down and he got clingy and whingy instead, which was easier to manage. Daddy came home a little early, which was the best surprise, and he let me vent so I could move on. The Bubbly One fell asleep easily that night, and only woke briefly through the night, and the next day, though still a bit challenging, was a lot better.

It was a full-on day, but I'm pleased to say that I didn't indulge in the massive pity party that I normally would have. I did a lot of huffing and puffing in disbelief that so much could go on in such a short time, I raised my voice more than a few times, I had a cry in the shower, and I posted that it wasn't a good day on my facebook page, but I think I managed to keep it in perspective, because it could have been worse, and as much as it drove me crazy, there wasn't anything catastrophic about anything that happened that day. I think had he not had a day of vacation care on the horizon later in the week I might have been more negative, and tired before it even began.

It was the low point of what has been a great holidays for us and at bedtime I got a hug and lots of kisses from a little boy who was even more exhausted than I was. It was hard on both of us and had I not kept notes the day would just be a tired, stressful blur. But I wanted to write about it, so that the next time I can try to keep things in perspective, so that the next time I can better prepare myself and make plans- to have fuel in the car and maybe to have a sitter booked for The Little One so that I don't feel like I am letting him down by not having the time for him that I have when his brother is calm and settled. But most of all, I wanted to remind myself that it passed, and that while the world may spin out of alignment for me for one day, it is just a small taste of what my son experiences all the time. Six months ago we had two weeks of days like this over Easter, and six weeks over Christmas before that. That he managed to overcome all of this in one day this time around, and have a pretty awesome holidays just shows how far he's come, and I couldn't be more proud of him.