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. 

"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.
 

"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. :-)

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.