Thursday, 27 June 2013

A School That's More Than Special.

Tomorrow marks the end of The Bubbly One's first semester of  Kindergarten, and today we went to the recognition assembly for the first half of the year. The Bubbly One wasn't getting any awards but it was one of those occasions where families are invited to come along and have lunch and hang out with their child's class and teaching staff afterwards. They did the same thing at the end of first term and it was great fun and a really good chance to get to know his teacher and aide better, and also to meet some of the other families and our son's friends. Daddy took the day off to come along today and I'm really glad that he did as it's really hard to convey to him how things work so well there. He also got to see The Bubbly One playing with other kids his age willingly, happily and without it being facilitated by an adult! We got his half yearly report and were so pleased with his progress, and also impressed with how it was presented. Each of his goals and key learning areas have been reported on of course, as per his IEP, and with each section there were photos of our son working on each area. There was also a digital copy containing additional videos of him at work, and work he does- with a gigantic smile on his face most of the time!

I never thought that we would ever find a place where our son was as valued and as happy as he was at the preschool and early intervention service he went to last year, and then he started school. After working in post school programs for over a decade I knew which schools in our area were amazing, and I knew the ones that I would fight to keep my son away from. There was no thought of mainstreaming- The Bubbly One has a severe global developmental delay as well as autism and he needed life skills teaching as well as academics. There is a lot said about special schools, and so much of it is negative- that they isolate children with disabilities rather than promoting awareness and acceptance, that they focus on life skills at the cost of academics and that the children are effectively babysat because their potential is not recognised. I've heard it all, and sadly there are schools and units within mainstream schools that are like this. At the same time there are others, and I believe that they are in the majority, that do everything they should do, and more.
In preparing for school placement for The Bubbly One I talked to a lot of professionals and parents. I looked at a lot of schools, and I absolutely fell in love with one that I knew well by reputation as being innovative and a leader in special education in our state. More importantly I knew that they championed their students- that they were brilliant at tapping the potential that so many failed to see in kids with more severe disabilities. I knew many of their former students and heard the most glowing reports from them and their parents, and I'd seen the absolute joyous reaction in the young adults that I worked with when we saw one of their old teachers in the community. As I walked around that school and I saw the relationships between the kids and with their teachers and aides I wanted that school SO badly for my bubbly little boy and I was overjoyed when he was allocated a place there.

The Bubbly One is in a class of seven kids. Many are somewhere on the autism spectrum, some have Down Syndrome, some have severe physical disabilities as well as developmental delays and sensory issues. Some also have life threatening health issues. He has a teacher, a full time aide and occasionally a third person if there are students doing placements. Each child has an IEP and their lessons are individually tailored to where they are at and how they learn, and he is not only surviving the transition to school, he is thriving.

I have watched him learn and grow, seen the knowledge that we know is in his head drawn out by a teacher who sees his potential and is brilliant at teaching him new things and helping him to retain them. He comes home excited to show us what he has learned, and today was so excited to show us where he learns it. His receptive and expressive language has improved, as has his behaviour and ability to focus and attend to what he is doing. His anxiety in groups has plummeted, and yes, his living skills are improving in leaps and bounds also.

My bubbly boy, so shy and anxious outside of our home, has gained a confidence that I never thought I would see in him, and while the amazing teaching staff and culture of the school deserve a lot of credit, I truly believe that the key to this newfound confidence has been that for the first time he fits in. I never thought that he was terribly aware of how different he was from the other kids at preschool until I saw him respond to his classmates at school almost immediately, and they to him. At preschool occasionally he would have a little girl take him under her wing, but when they didn't get much of a response from him they would drift away to more reciprocal friendships. I'm sure that plenty of facilitation happens during the day, and I know that social skills are a big part of my son's IEP, but this is what I see every morning:

The Bubbly One runs into school giggling, hands often over his ears, but with a huge smile on his face. He walks into his classroom and does a lap around the room to check out who is there. I call him back and he puts his things away, and then he runs to greet his closest friends. This is a ritual I never get tired of seeing because they are friendships formed by he and the other kids spontaneously on their first day of school.

The first is a little boy who he has much in common beyond the fact that they are both autistic. Handsome little boys with tousled blonde hair that rarely gets cut, and devilish grins, they run and spin around the room together like twin tornados. One bounces on the fit ball until the other steals it and they compete for the same musical toys. Both are naturals on the iPad which reveals an intelligence in both of them that their lack of language belies. In the morning they smile and dance in front of each other and then The Bubbly One puts an arm around him and goes in for a hug, only to be pushed back out of his friend's space- and then the giggly dance resumes. This little boy has some health issues and The Bubbly One always seems to know when he is not well. On those days he will very gently put an arm around his friend, pat his shoulder and kiss his cheek. The Bubbly One also annoys the crap out of this friend sometimes and thinks it's hilarious when he is saved from the pinch, hit or bite that he has thoroughly asked for by a fast moving teacher or aide!

The next is a little girl with Down Syndrome- small, blonde and oh so cute. Determined, curious and the youngest in a family of older kids she runs rings around the boys at school. The Bubbly One goes to give her a hug and she gruffly says "No!" (her response to most things), then giggles, hugs him back and licks his hair. The Bubbly One laughs and moves on- he knows better than to take her on!

Next is another little boy with autism. Tall, thin, quiet, and with the most expressive brown eyes I've ever seen. This friend taught The Bubbly One how to point- three years of speech therapy and he learned from this friend in a month! He gives me a big smile from across the room and points his long thin fingers at me, then at The Bubbly One, then at the baby. The Bubbly One wraps him in a bear hug and squeezes, just how he likes to be hugged- and his friend's eyes look like they will pop out of his head. "Gentle hands" calls the teacher and The Bubbly One lets his squashed friend go, gently rubs his shoulder and then runs to me.

I give him the squeeze that he is craving and he puckers up and kisses me on the lips. I give him one more squeeze and say the words I know he is waiting for: "Love you buddy, work hard.". And I am dismissed. : )


Saturday, 22 June 2013

Autism Service Provision and IEP's; Aussie Style!

I read a lot of autism blogs, mostly written by parents. The vast majority are from America and I am always struck by three things. The first probably goes without saying but I will say it anyway: we're all going through similar things. It blows my mind that I can have a crap day and get on the computer and most of the time there is a mum or dad on the other side of the world who has just blogged about the very things that have either plagued my day, or which are consuming my thoughts. I truly believe that without the internet- and particularly without Facebook, I would not cope as well as I do.

The second thing that strikes me reading other people's blogs is how much they have to fight their insurance companies to pay for vital services and medications. In Australia we complain about our health system but we are so incredibly blessed to have government provided health care. Yes, there are long waiting lists for non-urgent surgery (like my son's tonsillectomy), but when any of us are sick we can see a doctor for free. The Bubbly One has a health care card so most of his prescription medications only cost $5.60 (but we were paying $68 for melatonin!) and he gets free dental care at a disability specific dental hospital.

In terms of funding for services, in Australia children with autism are funded $12 000 from diagnosis until they turn seven (two allocations of $6 000p/a), so for the next year and a half we are pretty much set, though I watch the statements like a hawk to make sure that we don't run out. The Bubbly One is having weekly OT and fortnightly speech at present and his therapists charge his funding body for services. All I have to do is sign the forms and check the statements which are emailed to me monthly. We are very fortunate with my son's therapists. Both are very experienced, brilliant with The Bubbly One and work for themselves as part of consortiums. Their fees are very reasonable compared to larger centres, they never charge us if he is sick and misses a session, and they always give him more time than they charge for. His OT also gives me a massive discount for any equipment that we purchase from her company (usually close to cost price) and often gives him freebies. This is a rare situation and his therapists have become friends as much as supporters of our son and family.

Once The Bubbly One turns seven we get a handful of sessions (5?) part-funded by Medicare each year and our private health insurance covers 65% of sessions until we've reached $400 each for speech and OT (but for this level of cover we pay $150 per fortnight or get taxed higher for not having it). We can also get a 18-20 free sessions in total until he turns 15 (or 13, I can't recall). We could put The Bubbly One on the waiting list for government provided therapy services for when he is seven or older, but to be honest I'm not really impressed with what I've seen from them when I worked in the disability world, plus they don't offer OT with sensory integration which is what my son needs and will do for quite some time. I also get paid a very small allowance from the government that is not means tested, and it will be enough to pay for one therapy each fortnight plus a little extra, which will almost cover fuel to get there. So, even when his funding ceases we will manage, otherwise I'll be returning to the workforce!

We are also lucky to have gotten a respite package this year, something many families miss out on and desperately need. I haven't seen the dollar figures as it hasn't started yet but it will be enough to give us a break and to give The Bubbly One somewhere fun to go without us tagging along! I am stunned at the amount of parents who don't apply for respite who would be eligible, though I am in the enviable position of having worked with the people who will be providing my son's service so it's probably easier for me to trust that he'll be in good hands.

Our government is in the process of enacting a national disability insurance scheme which will provide total coverage for people with disabilities that they are either born with or acquire at any stage of their life. I am both excited and cynical about this. It will happen eventually but it's being used as a political football at the moment and it will still be years before it is fully operational. This will be partially funded by a levy on most people's taxable income and a lot of people in the community aren't happy about it, though they do support the idea of a national disability insurance scheme. No one really knows yet how any of this will work and cynical me is waiting for the proliferation of new services to emerge out there to "help" families manage their services (for a fee of course!).

So that's where we're at in a nutshell with a five year old at the severe end of the spectrum. There are also some payments from the government that we've applied for that not everyone knows about. We are able to claim some money towards the cost of incontinence items until he is toilet trained, we have been successful in getting some funding for play equipment for our home through our early intervention service (we claimed a year ago and it's being installed next week), and I was successful in claiming a one off crisis payment last year after I left work to assist us financially. We have a great welfare system here- many say it's too generous and perhaps it is, but anything we receive goes towards our son's care and I defy anyone to say that he doesn't deserve all of the support we can get for him.

Finally, IEP's. I am amazed and saddened at how adversarial this process is for so many and clearly in the USA it is entrenched in some pretty rigid legislation in order to ensure that it is used correctly and that each child's rights are upheld. I read blogs where people talk about taking their lawyer into their child's IEP meeting and I think about my son's first one at school this year, where his teacher and I (just us!) sat down over coffee and went through the process together. We laughed a lot. It was relaxed and informal and we got everything into that plan that we wanted. His OT and speech goals and plans were already being implemented and were included. Everyone was on the same page and I had (and have) final say on his goals and how they will be worked towards (until such time as he's able to actively participate in the process). It's a legally binding document, yet if it needs changing I have a chat with his teacher, or she speaks with me and we change it, without a massive production.

Perhaps this is so simple because The Bubbly One goes to a special school for kids with severe disabilities. Inclusion is not a goal for us and in all likelihood won't be in the foreseeable future. He's not fighting for limited resources in a mainstream school, but enjoys an individually tailored education in a place that is set up to help him to learn in the ways that he does best- and he's thriving there. I went into his meeting prepared to push for certain things, only to find that they were already in place because that's just what they do- because it's right and the best way to support him in discovering and meeting his potential. Perhaps this will change in the future and I'll have to unleash my inner Mama Bear (she has come out in the past), but for now school is the easy part for us.

I'm sure that there are parents in Australia with IEP horror stories (we would have had at his first preschool had I not withdrawn him), but I've sat on both sides of the IEP/IP table- both as a parent and as a service provider and I can count on one hand the number of times that a meeting has gotten heated, and to be brutally honest, I think it was more of a personality clash of the people involved and nothing to do with the person whose interest everyone was supposed to be looking out for. Maybe I haven't experienced a "real" IEP, and maybe I'm not a real "warrior" mum because I haven't needed to kick and scream for my child's rights a whole lot as yet, but I'm happy, the school are happy and most importantly my boy is happy.

P.S. If you're an Aussie and want more info on any of the funding sources I've touched on above feel free to inbox me on Facebook. Some of these I only found out about because I know people in the industry who've heard through the grapevine that something's available. Also, what I've described above is just what we access for our five year old in our circumstances and I've kept it very brief so as not to put people to sleep! Older kids and adults are entitled to some other stuff also which I may be able to help you out with. Feel free to ask! : )

Thursday, 20 June 2013

I Didn't Realise- Lessons I'm Learning and Taking the Medication Plunge.

It's been a full-on month inside our autism bubble. Endless sensory seeking, not much sleep, hyperactivity and increasing hitting and kicking from The Bubbly One, The Little One has his first cold and is showing me just how amazingly settled he usually is, and we've started some planned work to our house and yard so my blog and Facebook page have been pretty neglected. I confess that I've also found myself struggling with everything going on with Master Bubble and needed to take something of a step back from everything at night (when I'd normally write) just so that I could recharge for the following day (or sleepless night).

The Bubbly One is only five years old and has suspected sleep apnoea which, along with his sensory issues, anxiety and hyperactivity, makes it hard for him to not only fall asleep, but also to get quality sleep once he's out. He had melatonin prescribed back in April (only a paediatrician can prescribe it for kids in Australia) as our first option and to get him to sleep it was awesome. The problem was that he would wake at 3am most nights (I don't consider it morning!) ready to start the day. He'd have plenty of energy from having some quality sleep and would have a great day at school. He'd get home at 3:30, or 5 on therapy days, and he'd be exhausted after keeping it together all day and would unleash until his melatonin kicked in at bedtime. Then the cycle would start again at 3am.

We'd looked at everything that could possibly be causing The Bubbly One's behaviour to increase so markedly. It was like his entire world was off balance and he was desperately trying to right it again but without success. We'd been behaviour charting since December and there was always something that could be throwing him out, but those things were becoming more and more minor as his behaviour became more and more erratic, and the sleep situation became more and more difficult. The Bubbly One has always been fairly adaptable but that was changing before our eyes, and as hard as it was to admit it, we were really struggling to cope with his hyperactivity and impulsiveness. We were doing everything his therapists suggested, yet nothing was working- and he wasn't happy.

Then for the first time we began to see some aggression from him- first at walls and doors and then at us. He would hit and kick (me in particular), and then would cry and kiss me to try to make it better. He's still small so he couldn't do any major damage to me, but he began to try to hit his baby brother, something he had always stopped himself from doing. He also has kids with severe physical disabilities in his class so I worried more when his teacher said that he had attempted to hit one of his peers. He was miserable already, but to see him so upset after he had lashed out was nearly as bad as the act itself. I conceded defeat at this point and called his paediatrician. He believed that the sleep issues were exacerbating all of the other behaviours and suggested the other option we'd discussed which was Catapres (Clonidine). He said that it should help with the sleep situation with the added bonus of it taking the edge off his anxiety and ADHD type of symptoms (he's undiagnosed but ticks all the boxes). Now, I have no issue with medication and have seen it change lives for the better. We are fortunate to live in a day and a place where science has given us an additional and very valuable tool in our arsenal to help our kids (and adults), but despite what my brain says on this one, I don't mind telling you that part of me still felt like I'd failed my son.

Before I had my kids (and until The Bubbly One started early intervention) I worked with adults with moderate to severe disabilities, most of whom fell somewhere on the autism spectrum. I LOVED it and I was good at it. That work, and more importantly, the people that I worked with made a profound impact on my life. Those young men and women, and the people working with them, made me who I am today and prepared me for my son in so many ways that I never envisaged back then. But I also carry some "baggage" from that work. Most of it is positive and makes me a better parent and advocate for my child, but some things drive me to worry and fear for his future, more so than if I'd been new to autism when he came along. One of these is my tendency to jump ahead twenty years in my brain and see the "minor" things that my son is doing now happening when he is a big and strong man. I have worked with (and been very fond of) some big and strong autistic men in my time. Most were gentle giants when they felt valued and safe, and The Bubbly One makes me smile often when he does something to remind me of one of them. But some, to be quite honest, could be pretty scary when their world turned upside down and they hit meltdown.

The thing that I struggle with, is knowing that as a professional I was always able to help the people that I worked with, yet I've been at a loss with my boy. At work I was known for being calm (and patient!) in a crisis, and for being able to diffuse a potentially dangerous situation so that there would be a positive outcome. I led a team and educated others in understanding autism, in navigating each individual's sensory issues, in facilitating communication and in preventing and responding appropriately to challenging behaviour. I did this successfully with some of the most complex individuals I've ever known. So why do I struggle so much with my five year old, who I know and understand better than anyone else in the world?

In pondering this I've had to admit that I really didn't get just how draining life as the parent or carer of someone with a disability can be. I thought I did, but until I lived it, I didn't realise how unrelenting the stress is. I didn't understand just how hard it is to care for your other children, your spouse and your home, and still be consistent in giving your child the support that they need. I didn't understand the isolation of the anxiety that hits you with every new stage of your child's life. I didn't realise that the overwhelming love that you feel for your child magnifies every high and low that they, and you go through.

My son's life, his emotions, his experience of the world, is for the most part interpreted for others by me, and it has been gut wrenching to see him so unhappy and not know what was turning his world upside down, nor what I could do to make things easier for him. It was terrifying to give him a medication, even when his paediatrician (whom I trust) said that it was safe, to wait and watch for possible side effects and to feel like I was pinning my hopes for my son on something that might make things worse for him. I watch him still, but I am starting to breathe again.

After one week he has stopped lashing out. He is sleeping peacefully- he still wakes for a reassuring cuddle at 2am but instead of thrashing around on his bed in frustration because he cannot stop moving he quickly drifts back to sleep. He is still a bundle of energy and noise, with a "witching hour" at 5pm, but he is focused at school and he is learning- and he is trying to carry over what he learns at home rather than switching off when he gets home because he is exhausted. He is trying to follow instructions and using some words to talk to us because he can concentrate and is not overwhelmed with frustration. He still lives in a sensory world, but when he seeks, it is for enjoyment, not to cope with a grievous wrong that no one understands. In short, he is happy, and I am enjoying my little boy again. 

Sunday, 9 June 2013

"She Went Away"

It's been "a day". A weekend actually, and it's not over yet. I really wanted to post something uplifting this weekend, but that's just not where we're at right now so feel free to wait for a happier post if that's what you need at the moment.

Still with me? Thank you for staying.

It's a long weekend here this weekend. I'd somehow missed that until just a few days ago when Daddy asked if we had plans for Monday. My parents were more on the ball and had offered to have The Bubbly One for a sleepover last night to give us a break from some major sensory seeking we've been struggling with. The Bubbly One loves to stay with Nanny and Pop, and a sleepover with them often helps to break any bad patterns he's getting into. So I was actually starting to relax about this weekend. I had grand plans to use the time to catch up on some housework as I haven't been able to leave Master Bubble unattended for more than a quick bathroom break lately, and the house and washing pile are looking pretty desperate. 

So yesterday to have him well-regulated and semi worn out for them so he would(hopefully) sleep okay we did heaps of sensory play with him, lots of trampoline and outside time and he did some great work on some speech therapy type of work. His behaviour was pretty good all day, though we still had to be right on top of him to stop him throwing things over the fence (to the side with the nasty neighbours of course) and stripping off his clothes. We talked about the sleepover with him throughout the day and he seemed to get it and giggled whenever we mentioned it, which usually means that he's happy about it.

I packed his bag and we headed over there. This was where I messed up and ruined all of our good preparation. Normally I'd drop him off and leave fairly quickly, but my mum wasn't home yet so I stayed for a while so I could see her. Apparently I stayed too long though and confused him because when I went to leave he lost it. There was no way he was letting me leave without him, even trying to climb the gate to their front deck to leave. This was rare for him so I cut my losses and took him back home. I was seriously disappointed and cursing myself for not sticking with what usually works. Oh well, I thought, if he's keen to be home with us we should have a good night. He didn't.

When we got home it started- banging the walls, obsessing over my phone, hitting me, tantrums, throwing toys, turning the lights out. By the time bedtime came around every one of my buttons had been pushed, for it wasn't just sensory seeking from him, he was ticked off with me. I'm assuming because I had been going to leave him. I tried to talk with him but he didn't want a bar of it and just pushed me away with a cranky "bye". Daddy put him to bed and I sulked for a while, then resolved to start afresh tomorrow.

Today started at 3am, though Daddy got up to him so that I could sleep as I wasn't feeling well and The Little One was due for a feed soon. The morning was trying but not too bad. Lots of banging on walls, rearranging his room furniture and stripping his clothes, so we went back to the sensory play, trampolining, all of that stuff that usually helps. Daddy had plans to go to the football with a friend and headed off just before lunch time. Then began the Dr Jekyll and Mr Hyde routine.

One moment he loved me. There were hugs and kisses and occasional words. He said "baby" over and over again to The Little One and gave him gentle kisses and cuddles. Then he would begin to bang on the wall again. Then he would kick at it. Then he would bang open his bedroom door and slam it shut. His clothes would come off. He peed on his bed. He piled all of the toys he could find in a corner of his room, he pulled his mattress off the base of his bed and he jumped and ran and rearranged things so much that he was puffing from the exertion.

I have no idea how his brother slept through it during nap times. I could see him getting more and more worked up- but it wasn't like the lead up to a meltdown. He seemed angry. He'd be sweet again for a few minutes, then he would start again, but the banging got more and more intense and he was glaring daggers at me. He began to hit out at me, even following me when I moved away to hit me again. The Bubbly One has not been aggressive in the past. He would hit out in frustration occasionally but until today he's never deliberately targeted me. He's still young and there wasn't much force so it was easy enough to grab his hands and try to redirect him but he was persistent and kept trying. I thought perhaps he was getting sick too, or he was in pain. I tried to ask him but he can't really tell me. He will say "ow" if something's sore sometimes but he was moving comfortably and eating which is usually the first thing to change when he's getting sick. I tried distraction, I tried redirecting him, I tried giving him space but he just got more and more upset, crying, yelling and hitting me. I was sure he was angry, and I just didn't know why.

In a burst of wishful thinking I got my phone out with Tap To Talk and opened to the emotions page (he wouldn't let me near the iPad). The Bubbly One does not use the iPad to communicate purposely yet but will use it to engage me in "conversation", which is pretty much him working through each option and me making up responses- more like storytelling than an actual conversation, but big progress nonetheless. He will be learning to use the iPad to communicate at school but still is only just getting the idea that pictures can be used to indicate something. Tap to Talk is his favourite at the moment.

We worked through each option.
"I feel sick": No response.
"I'm angry": Apparently not.
"I'm frustrated": Yes, but that was me.
"I'm sad": He hesitated. Then he pressed "She went away" and he pressed it again. And again. He meant it!

Okay, three options came to mind: Daddy was out. Had he said goodbye? If that was it, then why did he seem so angry at me? He's usually more clingy when Daddy's away and he's away a lot for work so it shouldn't have been a big deal. Second Option: was it about me trying to leave him yesterday? Given his behaviour toward me last night and the targeted hitting it was the most likely. Or Option three: he understood that there was no school tomorrow and he hadn't seen his teacher since Tuesday. Unlikely, but who knows?

I still don't know for sure, but I do know that he settled down a little when Daddy returned. The hitting out stopped, the banging stopped. The paper ripping, light flicking and jumping on his bed continued but without the intensity of before. And one big breakthrough: when Daddy asked him if he was good for Mummy he touched "I'm angry", then "She went away". Daddy asked about the hitting and he pressed "He hit me", and "I got hurt", and when Daddy said that Mummy probably needed a rest after today he smiled at me and pressed "I want to relax".

Who knows whether all of that was purposeful and he was referring to me getting hit and hurt (I had told him hitting hurt). Maybe he was just making conversation, or maybe he was upset with both of us and I was just there when he reached breaking point. I don't know, but for the first time he was not only motivated to tell us what was wrong, but he was able to show that he could process and discuss something that had already happened. I believe that often a rough patch with The Bubbly One is him trying to work out something in his head before he makes a giant leap into our world. Perhaps this is it.

Thursday, 6 June 2013

"No. I Won't."

I had an "encounter" with an older lady in a shopping centre today while shopping with the kids. Guess what, it wasn't that kind of encounter. My kid wasn't misbehaving and she wasn't commenting on his behaviour, his harness or his iTouch blaring in his hand- in fact, I don't know that she even noticed him. But what the woman said made an impression and I've wanted to sit her down for a reality check ever since. First, a little background.

The Bubbly One's school was closed today so that the teachers could go to a conference. It was a good conference for them to go to and they'd swapped it with another planned closure day with heaps of notice so that was fine. The Bubbly One's been pretty full-on at home lately with endless sensory seeking, which I blogged about yesterday. With this all too fresh in my mind I was not looking forward to a day at home and had resolved to get us out of the house in some way, shape or form. My options were a drive, a walk or some shopping.

Master Bubble has always been a pretty good shopper. Sure, he has occasional tantrums, but he's only had a couple of full-blown meltdowns while shopping so I'm reasonably comfortable doing a fly-in, fly-out shopping trip with both boys. I do our grocery shopping with The Bubbly One most weekends while Daddy and The Little One enjoy some time together. He wears a backpack harness attached to my wrist, I buy him a donut as soon as we arrive, and he "helps" me to push the trolley or The Little One's pram. As much as I'm "on-guard" throughout it I enjoy our shopping trips together. He's come a long way and he's quite proud of himself when I tell him what a great job he's doing (plus he usually scores a little toy). We don't get many rude comments because it's reasonably clear to look at him that he has some type of disability. The few times we have had people comment have stayed with me, but that's a post for another day.

So, we had a day to fill and The Bubbly One needed jumpers for school as we're heading into Winter, so in we went. I've been having trouble getting him to wear a jumper to school and I thought that it was the feel of them on his skin, but after weeks of having them thrown at my head with screaming and crying I finally clued in that it didn't matter what material they were made of because it was the royal blue colour that he found so offensive. So I tried a grey striped jumper. Not a problem. A red one? Fine. Bubbly goes to a special school where most of the kids have sensory issues so when I told his teacher she said to just let him wear whatever he was warm and comfortable in. So our mission was to find jumpers that were not royal blue (or zippered jackets, they're all wrong too), but which still made him look like he belonged to the school.

When we got there I followed the routine. I parked up a level so that he could get his head around walking properly before there were many people around. He helped me to push his brother's pram while wearing his harness and we headed straight for Donut King. It was a little busy but he was calm as we waited (I almost relaxed at that point!). I prompted him to show me what he wanted. Pointing is a new and very celebrated milestone for our boy. He was a little torn today though, and pointed to a few things randomly. I narrowed it down to just two and I noticed that our exchange was being closely watched by a little blonde girl beside him as she leaned on the display case. The lady she was with was placing a special order with her back turned.

Bubbly has a bit of a thing for blondes so when he saw he had this little girls attention he smiled at her and danced a little in her direction. She smiled at him and showed him what she was having. He then pointed at it and I enjoyed the interaction. Then it happened:

"Get off the glass or the lady behind you will go cranky at you". Grandma had spoken and was looking at me for back up. I looked at the little girl, then I looked at her. Had I heard  her right?
"Won't you?!"
"Um no I won't". I got eyeballed. Hard.
"Yes, you will". I eyeballed Grandma.
"No. I Won't." I wanted to say more but she'd already turned her back on me. I smiled at the little girl who was so lovely to my son. "Enjoy your donut sweetie." and they disappeared.

We had a hugely successful shopping trip. The Bubbly One firmly, but calmly rejected plenty of jumpers. He calmly steered the pram away from Target's entry instead of throwing a tantrum (what autistic kid doesn't hate Target?). He smiled as we walked past the scene of last weekend's photo shoot and giggled with his little brother. We checked out the pet shop and he put things down when told to. He grabbed a balloon from a stall (the lady smiled and said it was okay), and he didn't object too strongly to a jumper that I liked- so I bought two. He chose his fruit for school and conned some cars out of me in the supermarket (the point again!). He was awesome and I was so proud of him.

But the encounter with that woman stayed with me. I'm always expecting people to tell me to discipline my kid, but I never expected to be asked to discipline someone else's. And it bugged me that that sweet little girl was given a hard time after she'd been so nice to my son. There was so much that I would have liked to say to that woman, but I had to let three words suffice. I hope those words stayed with her, and I do hope that that beautiful little girl enjoyed her donut. :-)

Tuesday, 4 June 2013

Sensory Madness

I posted a letter to my son the other day where I told him some of the things that I love most about him. I cried writing it. It was quite overwhelming as I'd had a tough day with him and I'd lost my cool over and over again. I'd yelled more than once. I'd sworn- more than once, and by the end of the day when he kissed me good night and gave me an extra big hug before bed I felt like I had absolutely failed him. I'm feeling like that a lot lately.

The first word that comes to mind when people ask me what The Bubbly One is like is "happy"- and he is. The second word is "sensory"- and there are times when this innocent sounding word becomes akin to a swear word in our house. Master Bubble flies through life like a little cyclone, leaving a trail of destruction in his wake. "Sensory seeking" is a mild term to describe the sheer chaos he envelopes himself in most days. He runs, non-stop. He jumps, he spins, he throws things, he bangs on walls with his hands and feet. He pours, sifts and throws things to see them fall, he smears anything he can get his hands or feet on (yes I have cleaned up more poo than any mother should ever have to), he blasts the iPad at full volume, he rips his books to shreds and he strips off his clothes so he can feel the breeze, or his blankets on his skin. He lives in a sensory world- and he loves it.

The problem is, that despite my best efforts to meet The Bubbly One in his world, there are times when he has to join us in ours. Our world is foreign to him. It is a world of being still, of wearing clothes, of looking but not touching. It is a world where you are assaulted by sounds and lights of which you have no control, of people directing you where to look, what to do and how to do it. We try so hard to minimise the shock of this to him by catering to his sensory needs as much as we can, but lately the balance has begun to shift too far and his sensory world is taking over. He is immune to my attempts to engage him in play, he is amused by my futile attempts to slow him down, to get him to eat, to dress, to do all of those things so necessary to us, yet not so important to him. He is unfazed by my frustration, my impatience, my raised voice. He is happy, ecstatically so, and he smiles and giggles at me as if to try to share with me how wonderful he feels.

I think I understand why, yet I don't know what to do about it. You see, my boy goes to school ready to work. He goes to his therapies ready to work. When he comes home he is done. DONE, and he needs a fix. Is the trade-off for a good day at school, or a great therapy session, or an amazing photo shoot always to be unending chaos as he seeks to re-establish his comfort zone? Have we indulged him too much or are we doing the right thing and letting him order his universe again? Is he working on some giant developmental leap in his mind and this is him getting his head around it?

It wouldn't be the first time he prepared for a big progression this way, by going deep into himself and that sensory world. I find myself brought from moments of excitement and pride to long stretches of frustration and exhaustion. I live for those highs, and deep within me there is the hope that this long stretch of sensory madness is the lead up to something hugely significant for my boy. But for today, I am just tired, and I miss my little boy.

Sunday, 2 June 2013

The Family Photo Shoot: Part 2- What Was I Worried About?

Like most parents of children with disabilities there are some things that I am acutely aware of us missing out on as a family. Some things I still think will be possible with Master Bubble one day- relaxing holidays (unlike our recent Mothers Day "break"), riding bikes together, having a friend stay over, having a conversation. Other things I am not so sure will ever happen, and when we are going through a rough patch with him it can seem like most things are out of his, and therefore our, reach. Facebook, my link to the world, can be a double edged sword in that respect. There are the big differences- the funny things my friends' kids say, the soccer games, the school holiday activities, even the "relaxing while the kids play at the park" type of status updates. Then there are the things that really aren't that important but which we want- and family photos are one such thing.

Since The Little One came along we've been particularly conscious of the fact that we didn't have any photos of the four of us together and we'd resolved to try with a friend who is a pretty good amateur photographer and who "gets" our bigger boy. Then we won a photo shoot at an autism fundraiser at one of those places that do your hair and make up, Photoshop your pictures so you look amazing, and charge you a bomb for the prints. So I booked it, and then I began to plan, and to worry. You can read about my stressed out preparations and initial consultation with the studio here: The Family Photo Shoot- What Was I Thinking? .

So, on the Saturday I was stressed out to say the least. We overslept, we'd been unable to trim The Bubbly One's hair in his sleep as planned (haircuts are horrific), and I was having visions ranging from him refusing to get dressed for Nanny (my mum) and turning up in his onesie pyjamas for the shoot, to total meltdowns (from him and me) as everyone clamoured to get him to cooperate. You could say I was on something of a mission when we arrived. I clarified straight away how long Nanny had to get him dressed and into the studio and called her. 

To assist him in running the sensory gauntlet that is the local shopping centre Nanny and I had planned to put him straight into a shopping trolley with his harness on (for deep pressure as well as running off) and with his iPad. She was stocked up with bribery marshmallows, I had bubbles and his iPod with parts of Shrek ready to go on Youtube. Daddy later told me that the co-ordinator told him "Gee, your wife's really stressed out about this isn't she?". He was wise not to mention this until later don't you think?

While The Little One slept in his pram I tried to relax and enjoy having my make up done, but was so conscious of how loud the music was. I mentioned to the make up artist that this might be a problem and asked could it be turned down.
"No worries, we had a chat this morning about how we could make it easier for him". I exhaled and started to relax a little.
"So your son has Asperger's doesn't he? We've had a few kids with that in here." Oh no. "So do they take medication? Will he grow out of it?" I explained that The Bubbly One has classic autism and a developmental delay and told her that the best thing they could do was smile, be calm and not all talk to him at once- that he was a happy little boy who just got anxious in new places. Well, that was all they needed to hear. She passed it straight on, everyone was cool and I realised that all my stressing had done was put everyone else on edge. I mentally kicked myself. The only one doubting him here was me.

When he arrived we whisked him (trolley and all) into the photography room, and I have to say that he looked awesome in his jeans, rolled up white shirt, vest and tie. We took his shoes off because we weren't wearing any for the shoot- which also helped him to understand that he wouldn't be leaving for a while. The photographer, who was just so cool and confident, posed Daddy and I so that he and The Little One could see. We got him out of the trolley and he started to cry- until the photographer stood beside him and took a photo. The flash stopped him in his tracks so she did it again. And again. Then she let him press the button. "WO!". And again. She showed him the screen. "Mum!". Our boy was talking- and to a stranger! She took one of him and showed him. What happened next I will never forget and I dearly wish I could've filmed it.

Our camera-shy anxious little boy walked to the little stage and began to pose. He laughed and he smiled. He sat still on Daddy's lap. We got our family shot and more! We relaxed and we laughed and we had so much fun! Then the Little One got upset so I moved away with him to settle him- and my bubbly boy realised he had the stage and the camera all to himself- so he began to perform! He walked in circles. He danced to cookie monster singing on the iPad. The photographer danced too and he laughed with her. She asked him to jump and he jumped. She asked him to look and he looked. And he had the BEST time! We put The Little One down on the floor for his shots and big brother cuddled up to him, and kissed him over and over again, and the photographer just kept on snapping away. I am going to write a thank you letter to this lady but I really don't think that she realised what a gift she was giving our family.

When everything was done, we loaded The Bubbly One back into the trolley with promises of a donut and Nanny took him home so that we could choose our photos when they were ready. When the pictures came up on the screen we were thrilled. Not one, but two beautiful candid family shots, nice shots of Daddy and I where we didn't look tired or stressed, cute pictures of The Little One, and shot after amazing shot of our bubbly boy looking happy, relaxed and so very handsome and proud of himself. We left with a much lightened bank account needless to say, but it was so very worth it.

There was no meltdown, there was no chaos, there was just one little family having their photos taken- and having a truly awesome time.