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Friday, 31 May 2013

A Love Letter.

I recently started a parenting course for parents of kids with disabilities through my son's school. When we did the initial "around the circle" introduction exercise one of the questions we were asked to answer was something that we love about being a parent. Now I LOVE being a mum. I love that I am able to be at home with them. But do you think I could even think of one thing off the cuff? Nope. My mind went totally blank and I felt really bad about that. I know that the people in the group who know me know how incredibly much I love my kids but still, I felt bad and I guess it made me realise that I need to sit back and remember what makes my kids the amazing little boys they are!

So, without further ado, here is what I would say to The Bubbly One (though with short, simple phrasing and with plenty of processing time- you get the idea!). ;-)

My beautiful boy, these are just a few of the many things that I love about you:

Your Relationship With Your Brother
When I brought your little brother home I cried. Not because I was struggling with the new baby, but because I felt so guilty for turning your world upside down and not realising how hard you would find it. When I didn't even know I was pregnant you looked me in the eye one night as I put you to bed and said "Mumma. Beeebee". As the baby grew inside me you were so tuned in to it. You'd kiss my belly and tell me "beeebee" all the time, and as he entered the world you told Nanny "beeebee" even though you were two suburbs away. So when we came home I thought you'd be fine.

It broke my heart to see you drop to the floor with your hands over your ears and cry or scream at the slightest squeak from your brother, and I'll forever remember that the first time he laughed you screamed and punched your leg at the sound. But I'll also always remember that you took yourself away from him whenever you felt the need to lash out against the noise that hurt so much. I could see you wanting to be near him, but so pained by the sound of his cries. You worked through all of that and more.

I still tear up to remember those first gentle touches, with one fingertip to his foot, then to his hand, his tummy, and ever so gently your hand stroking his head, and the moment you kissed him, because you wanted to, made my heart absolutely soar with joy and pride. Now I watch you play beside him, and give him his toy when he drops it over and over again just so you'll give it back to him with a smile and I'm so very proud of how far you've come. He adores you, that little baby, and seeing the love that you have for him overcome everything that you struggle with just blows me away.

You are affectionate.
There is not a day that goes by that I do not thank God for this. I think, clich├ęs aside, that He knew that this was what I would need the most as your mum. I love that no matter what kind of day it has been, you will still give me a kiss goodnight (before you shut the door in my face and get into bed with Daddy!). I love that even though you have few words, you will occasionally say "luv yoo", and you mean it. I love it that when we've had an awful afternoon or morning you will take my face in your hands, just as I do for you, and look deep into my eyes with a smile. I love that you will come and snuggle up beside me, just because, or that you will wrap my arm around you as we walk into school. I love that you give your baby brother the gentlest kisses in the world, and I love how you cuddle up to me as I sing you to sleep.

Your affection has a powerful affect on people. I've seen more than one person become emotional after you've gone up to them and given them a cuddle. It's like you know that they needed it and they know how truly special it is for you to give them that moment. You show empathy where all of the "experts" say it is beyond your abilities. If someone is upset you will comfort them, when one of your classmates has been unwell you put your arm around them and kiss their cheek.

You Give Everything, Every Day
Some days this doesn't seem like much to someone who doesn't know you, but those tough days, when the world is spinning for you and everything is out of alignment are the days you give the most, just to be present with us. It's so easy to forget this and focus on how hard things are for us on those days. Forgive me buddy, for it is so much harder for you. You work harder every day than any five year old should have to but you give it your all and I deeply love and respect you for that.

You Teach Me
We watch everything you do. Every task is broken down, every direction repeated over and over and every action analysed. I often wonder if you do the same for us. I think in your own way you do, and you are so much more forbearing with our frustrations as we learn than we are with yours. You teach me to stop and see the things that I am too busy too see- the dust floating in the sunlight, the rainbow in that tiny bubble, the birds singing so softly in the distance. I am often so slow to understand what you are showing me, yet you keep trying with a patience that I envy. You are not resentful when I am impatient, and you forgive me over and over again when my attitude stinks. Without words, you bring me back to a place of gratitude and hope, each and every time.

And You Make Me Laugh
You have a wicked sense of humour. I see your brain whirring sometimes and I see you start to giggle as you think of what you are about to do. It's no coincidence that you love the sign for "mischief"! You make me laugh loudly and often, and it makes your day that someone shares the joke with you.

My little free spirit, you live your life with a joy that infects those around you. I love you and I am so very blessed to be your Mumma. xxx
 

Wednesday, 29 May 2013

Mothers Day Weekend. We Can Laugh About It- Now.

Mothers Day stresses me out. Every year we go on a picnic with the extended family. The mums relax (they've already prepared the food). I don't. You see, the husband's family thinks that as The Bubbly One likes to be outside that he'll love a picnic. They promise to help us watch him. "He'll be fine. You can relax and just let him go". Umm no. Master Bubble is a runner. He gets overloaded in open spaces, busy spaces, new spaces, and he just runs, and runs, and RUNS. All freaking day. Last year was still fresh in my memory- morning sickness and trying to keep up with him while everyone relaxed and enjoyed their Mothers Day. My own mum who came along later took pity on me when she saw I was near tears after three hours of it and took him home to her place so that I could relax for an hour or so. Bless her. My Mothers Day post really should be about her but I want to do her justice so my beautiful mum will get a post of her own soon. Anyway, I digress.

So this year I begged to just go away for the weekend. We needed to get away for a few days anyway. Daddy Bubble was all for it and The Bubbly One has always been great when we go away. So we booked a nice resort room with a heated pool opposite a nice calm bay. Perfect. Or it should have been.

We had a leisurely drive to our destination, checked in and headed our room. The Bubbly One freaked out in the hallway. Wailing, trying to run back to the lift. I get down on his level and look around, and I realise that the hallway looks like the hospital where I had The Little One last year. The poor kid thinks that I'm disappearing for a week and possibly bringing home another baby.
I say to him "Do you think mummy's going away?"
He wails again and there's a "yeaaah" in there. 
"We're all staying here together buddy, Mummy, Daddy, Master Bubble and The Little One- all together".
The wailing stops and he stands stillBy this stage he is planted just inside the doorway of the room which has a long hallway leading to the lounge room. Daddy puts his cartoons on the TV.
"Two sleeps buddy. All together. Do you want to sleep here tonight?" 
"YO!" Phew! Crisis averted, go Mummy!

Then he started to run. Up and down the long hall. He ran and ran and ran. He slapped the plasma tv in excitement. He ran and slapped, and pulled the stuffing from the lounge cushions until we gave him his melatonin three hours later. He crashed after 45 minutes- sprawled across the king sized bed. No big deal, Daddy and I watched tv from the sofa bed and went to sleep at about eleven. At 1:12am I was woken by a loudly "talking" Bubbly One. Gave more melatonin. Nothing. If anything he grew more hyped up. We tried everything and eventually gave him the iPad and traded shifts dozing beside him. Happy effing Mothers Day I thought.

Needless to say, Mothers Day morning we had one plan- wear him out. We headed for the bay, with The Bubbly One harnessed up, school shoes on his feet because he wouldn't wear sandals. We crossed the road and I realised that there was no way I was going to get The Little One in his pram down near the sand. All good, I had the carrier in our room so I raced back to get it. Five minutes later Little One and I return to the beach and Master Bubble and Daddy are nowhere to be seen. I call Daddy who says "We're halfway down the beach. He's flipped out, throwing sand at everyone and running into the water and going nuts every time I try to stop him. It's not going to work. I'll carry him up near the road, come and meet me so no one thinks I'm trying to abduct him!". Okay, so I head up to the pathway with The Little One only to see an elderly man fall over. I raced to help he and his wife who had a few little ones with them. He was okay and none of the littlies escaped, but when I tried to find The Bubbly One and Daddy I couldn't see them. I rang him again (what did we do before mobile phones??) and they were now even further down the beach. Master Bubble was in full meltdown mode by this stage. I began to trek down the beach but could not see them. I asked a couple sitting on the sand if they'd seen a blonde boy with a frazzled looking dad in pursuit pass by. "Oh yes, they replied. I think that's his nappy over there". Oh crap. "Oh no, that wouldn't be him" I said (why? I don't know) and headed off. I call Daddy again. They are right down the end of the beach- approximately 1.5-2km from where we started.

So I keep trudging through the sand, cursing how unfit I am, The Little One asleep against my chest and blissfully unaware of the chaos he's in the middle of once again. Eventually I find them. The Bubbly One is crouched naked from the waist down, wet all over and covered in sand. Daddy is barefooted and seething with frustration and embarrassment, standing just out of reach of the sand being flung at him. I catch my breath while Daddy fills me in on the tantrums, the throwing sand, the running into water over his head over and over and having to be pulled to safety, the peeing on the sand and of the stares when he picked him up and was pummelled over the head with Master Bubble's bare bum on display for all to see.

We decided that we didn't really want to walk back through all of that again so we hightailed it- The Bubbly One over Daddy's shoulder crying and hitting, and found the gate to a caravan park. And we walked, barefoot, with our pants-less five year old (who looks seven or more) two kilometres back to the resort, past the locals out for a walk and past the fancy jazz bar full of perfect families celebrating Mothers Day in style, with no choice but to smile and say hi to everyone we passed. What else can you do?

Anyway, after that little adventure, we calmed down and Daddy started to joke about fried shrimp being avoided (The Bubbly One only had sunscreen below his shorts). I love that man so much. He's had the morning from hell, rants for a while under his breath, then starts joking to make us both laugh. Once we got back to our room I cleaned us up while Daddy went on a scavenger hunt to find the trail of belongings we'd lost and our bags (complete with wallets and keys). he returned with everything but Bubbly's shorts and his own thongs (that's flip flops for you Americans I think). We went for a drive up the coast and got some McDonalds, and went for a swim in the heated pool- which was a raging success (we should have done that before braving the beach). We got the kids to bed that night, had a seafood platter from room service, watched the football and slept- on the sofabed again while the five year old had the king sized, but we slept, and we laughed- because what else can you do?

The Family Photo Shoot: What Was I Thinking? Part One.

A couple of months ago our little family participated in an autism awareness/fundraiser walk associated with Master Bubble's school. It was a battle to begin with but we made it the whole way around and walked away feeling like we had achieved something. As we crossed the finish line though our work was only just beginning.

Sensory overload and tiredness are not a good combination in The Bubbly One- it makes him move even more as he tries to orient himself. So when he saw his teacher selling raffle tickets and wanted to hang out near her I was more than happy to do so as opposed to chasing him through everybody's picnic lunches and anywhere near the large lake. In between stealing the ice from the eskys they were selling drinks from he caught a glimpse of a remote control helicopter which was one of the prizes in the raffle. Well, he wanted it. His teacher, who is a gem, removed it from the situation before it escalated further, we plied him with lemonade and ice to distract him and I bought a heap of tickets, never expecting to win. Well, we won, but too late to choose the helicopter, and what should catch my eye but a voucher for family photos at one of those places that does your hair and make up and then charges you an obscene amount for your photos. I picked it up thinking "We've never had a family shoot and we keep saying that we should while The Little One is still little". I say I was thinking- but clearly I wasn't.

We were very pleased with our prize and quit while we were ahead, taking the boys home (The Bubbly One was asleep in two minutes). I went straight in the next day to talk tactics with the studio. The plan would be that Daddy and I would go to get prettied up with The Little One and my mum would bring The Bubbly One to the studio in time for the photos equipped with bubbles, music, bribery tools, etc. I did my best to explain The Bubbly One, his sensory issues and his hyperactivity to the guy taking the booking, and he did his best to understand. He even tried to reassure me that they've had experience shooting kids with autism before. I left feeling okay, even optimistic about the entire venture. My biggest concern was what we would wear.

Fast forward a couple of months, the shoot is on Saturday and I am freaking out. The Bubbly One, while getting more sleep thanks to Melatonin, now has even more energy to burn. His behaviour is all over the place and I just can't pick what is going to be a good day and what isn't. His sensory issues have intensified to include sensory seeking with pretty much any substance his body produces, extreme fussiness about what he will wear, just running everywhere, and his tantrums now include hitting out. Add to this he is noise and sound sensitive with a fear of mechanical noises (e.g. hairdryers) and I am asking myself what the hell I was thinking booking us in for a photo shoot?!

The pre-shoot consultation last week did nothing for my stress levels either. Again, I tried to explain about The Bubbly One and prepare them for the fact that they will have only minutes to get a shot of the four of us (if we can get him in the door). The woman just didn't get it. "It's really nice that your mother is coming to care for the children". Umm no, she is the evacuation plan for when the proverbial hits the fan. "It'll be fine if you don't stress out. If mum is stressed she always looks it in the photos". Great, thanks for the tip. 

Then there's the "styling". "Do you wear make up?". Well, there went the rest of my self esteem. I'd been up since 1am with children that wouldn't sleep after a week with Daddy Bubble away. I was wearing shitloads of make up in a bid to look just a little bit alive- and evidently I still looked like crap! My hair got a look. Could I straighten it before coming in? What were we going to wear? Cue screwed up nose because I said we wanted- wait for it- colour. Apparently the old white shirt and jeans combo is just the done thing. How many outfit changes would we be doing? Um none, Master Bubble won't change clothes once they're on and I'm six months post childbirth, still breastfeeding and not much fits right now. No, I can't go and buy a few new outfits, I've seen your price list.

"Okay, let's talk about the packages. We have a number of great value packages starting from around $1500, but most people go for the iPad package. It's only $3500 and you get an iPad, loaded with 10 photos and your prints in an album. You'll want to bring your credit card." Seriously? I've just told this lady that I have a severely autistic child (whose iPad will probably be in our photos), a six month old baby and we're a single income household! Didn't I tell her that we won our package and that we'd be thrilled if they got just one shot with the four of us in the frame? Didn't I tell her the battle plan we'd devised to try to get that one single shot? Well, I politely said that it would not be possible for us to spend that much money on photos, and could I please see the prices on single prints. No, not mounted and framed, just prints.

I did well, I kept a straight face. Then I picked up my shredded self esteem off the floor, thanked her and left.

Stay tuned for Part Two, this Saturday. :-/

Monday, 20 May 2013

Inside the Bubble


Welcome! If you're reading this then you've possibly stumbled across my blog whilst killing time getting your your kid to sleep, or because I've shamelessly plugged the blog on Facebook! I suppose I should begin by introducing us. Boring I know, but necessary as a starter really!
The centre of the bubble is Master Bubble himself (also known as "The Bubbly One"). Five years old, disagnosed with autism at 3 years and a severe global developmental delay also at four. The Bubbly One is entirely too cute for his own good, which serves him well as he is a bundle of non-stop mischief who moves from sun up (if we're lucky) until the Clonidine kicks in at night. He is mostly non-verbal, sensory seeking, musical, messy and did I mention cute? He's also an affectionate and happy little boy who lives with a joy that is contagious. I know this beautiful little boy better than anyone else on this earth but have so much yet to discover about him.
Added to the bubble in late 2012 is The Little One. The Little One arrived in this world seemingly knowing that more would be asked of him than of other little brothers. He is happy and easygoing, enamoured with his big brother, and seems thoroughly amused by the chaos he's been born into! It's something of a shock after living in the autism bubble for so long to hear him babble to us and see him respond to his name. In the same way that I watch the Bubbly One, so fascinated and desperate to get inside his head, I watch the Little One, amazed to see him wanting to let us in at just six months.
Then there's my best friend and husband, whom we shall call Daddy for the purposes of this blog. Patient, hardworking and always putting himself at the back of the queue, I was truly blessed the day this gentleman asked me to be his wife and our boys could not have a more selfless and loving father. Daddy is a very private person so I won't be posting about him directly but be assured that he is always in the thick of the action (usually diffusing the situation and making me laugh at the absurdity of what we deal with sometimes!).
Then there's me- Mum, Mummy, Mumma. Thirty two years old, university educated stay at home autism mum. My journey is really just beginning and I feel like an old soul already. I've always worked in the disability world, but after struggling for the first year after Master Bubble's diagnosis I found that as much as I loved my guys at work I just had nothing left for my son at the end of each day. I miss those days though and so often The Bubbly One will do something that reminds me of someone I worked with. Most of the time I'll smile and silently thank that person for preparing me for my most important job, and other times admittedly I jump on him with a "don't you start that!". When I'm not kid wrangling (and often when I am) I am attached to my iPhone. I am something of an autism blog junkie and have a serious addicton to Facebook. I also like to escape with my much neglected friends every now and then and attempt to scrapbook some of our crazy life. I'm a Christian and regularly wrestle with God about why things are the way they are. Sometimes I feel like I get it, other times I have no clue, but the conversation is never boring!
Finally, I guess I should explain the name of my blog. The Autism Bubble is what I call the safety zone we tend to live in these days. Don’t get me wrong, we still get out into the world, but we are getting to the stage where the parties our son is invited to are for other kids with disabilities (mostly autism), his therapists have become friends, we socialise with other autism families. Other autism mums have become my dear friends and my phone and Facebook are full of them. Because his level of disability is assessed as severe he goes to a special school- where he fits right in and is happy.
We still have friends whose lives are untouched by autism (apart from our visits) and I love them dearly, however it feels as though we live on another planet when I hear them talk about their kids. I am sure that, all things being okay with The Little One, that I may have to learn to function in the real world soon enough, but for now, life in our autism bubble is what I know. Sometimes I try desperately to burst from the bubble, and for everybody’s sanity it is important- but I have become comfortable in the bubble too. Maybe it’s about accepting where my son is at. Maybe because it’s a place where I am a little sheltered from the fact that he is years behind his peers no matter how well he’s progressing. In the bubble I don’t have to fight so hard to celebrate my beautiful son and to prove his value to the world. In the bubble he is happy- and so am I.
So welcome to The Autism Bubble! Now that the formalities are out of the way I look forward to celebrating our beautiful son and sharing our journey with you.