Thursday, 7 November 2013

Watching, Waiting, Hoping.

Note: Before I start, I'd like to give a "heads up". This post is about supporting our son with the help of a medication (Ritalin). There is a lot of very scary information about Ritalin (in fact, any medication) out there. There are also a lot of people who are passionately against the use of medication, and Ritalin seems to be on tabloid style current affairs programs and talkback radio every week, and always in a negative light. If you are someone who is absolutely against medication, especially Ritalin, then can I respectfully ask you to please just skip this post. I'm not out to change anyone's opinions, nor am I looking for other people's opinions (to be quite blunt), I'm just here to share our story. Thank you.

The Bubbly One collected an additional diagnosis today. ADHD. Surprising? Not at all. How do I feel about that? I have no idea. It just is, as it has always been, we just have it on paper now.

I wrote this two weeks ago after a visit to Bubbly's developmental paediatrician, and I was just going to delete what I'd started and just not bother. Bubbly's ADHD diagnosis wasn't a shock. Like his autism diagnosis, his paediatrician gently began to broach the subject after I spoke about his hyperactivity, his impulsiveness, the danger he's putting himself in on a regular basis, his running off and his frustration with himself when he cannot attend to anything he wants to. He danced around saying the words, and like his first diagnosis, I confirmed it. "He ticks all the boxes" was how I phrased it this time. There was no grand announcement, just an explanation to the school as to why he will be taking Ritalin.

... fulfils the diagnostic criteria for Attention Deficit Hyperactivity Disorder under the DSM V...

It's true. It just is, as it has always been. We've recognised when he is sensory seeking and why. We swear by sensory integration OT, we use a sensory diet, and continue to do so. We've already started Catapres (Clonidine) in a bid to help our boy to get the sleep his mind and body so desperately need and to help him to concentrate at school, and it has helped. He has positive behaviour plans in place everywhere he goes. He has been in speech therapy since he turned two and we implement everything at home and school. Everything has helped. But we had finally reached a point where we had to acknowledge that none of it was enough. If we could live between home and school for the rest of our days then perhaps we could have avoided this. If we were content have our child struggle to learn, to concentrate, to blame society and a lack of acceptance for his low self esteem, then perhaps we could have left things as they were.

But the reality is that there is a world out there that my son needs, and wants to be a part of. My son has a love of learning, but he also knows his limitations. He always has, and if he thinks that he isn't able to do something then he will not try. He couldn't concentrate. He couldn't sit still. He couldn't relax and do the things that he likes without bouncing and moving and fidgeting and getting up to do things, and then getting distracted by other things, and then being thoroughly confused because he had no idea what he wanted to do or how to go about doing it anymore.

I'm confused just reading that, and if you are too then that's just a little insight into how he was feeling!

He was also at risk constantly, no matter how much I was glued to his side, and sometimes this also put his little brother at risk also. "Helicopter mother" is a mild term for the level of supervision needed to keep The Bubbly One in one piece. He ran onto the road, over and over again. He would have done so many more times had he not been wearing a harness or had me holding him in a death grip. He ran at stairs with no awareness that he would fall with his low muscle tone and poor coordination, he grabbed at hot things, he'd run into water over his head, be pulled out and do it again, and again. I returned from a minute toilet run and found him with a carving fork from the dishwasher in his hand the other day waving it perilously close to his brother's eyes and his own. Earlier that morning he'd pulled the (locked) utensil drawer so hard that it broke and flew out of the bench top, scattering all manner of sharp items onto the floor at his feet. Then once I'd repaired it he did it again, and again, and again (yes I'd removed the sharp items). These are just a few examples of what we see nearly every day and every near-miss terrified me.

 So I had "the" conversation with Bubbly's paediatrician, and he told me that the most successful and safest drug for treating ADHD is Ritalin. I'd done my research and it terrified me. There are so many horror stories out there about Ritalin and it's sister drugs, and there is so much hate out there for parents who give it to their children. I expressed all of this to The Bubbly One's paediatrician, and he gave it to me straight. He talked through the side effects, how it should and should not work, and how we ease him onto the dosage so as to make the transition easier for him, and hopefully lessen the side effects. He gave me a plan to ease him onto it so as to minimise the side effects as his body adjusted to it, monitoring forms for us and the school to complete to track side effects and performance measures, and some reading material on what we could possibly expect during the transition period.  He also talked about what he has witnessed in his decades of experience in treating children like my Bubbly One, and he told me the statistics that you don't hear about, where it has been a wonder drug, and indeed, when I later posted on my Autism Bubble Facebook Page the response that I got was overwhelmingly positive.

I have to admit, this surprised me. I expected to be flamed for even considering giving Ritalin to my child, but I had comments and private messages saying that the first week or so was tough, but that they hadn't looked back, that their children had made huge progress once they could concentrate, and the added benefits to their relationships and self esteem. There were also others, like us, who had contemplated walking down that road but hadn't yet, because they were afraid, because they'd heard the horror stories, because they'd spoken with doctors who had accused them of seeking a "quick fix" and who'd heaped judgement on their heads for even thinking of medicating their child. So many of these families begged me to keep them posted on how The Bubbly One went, and I suppose this post is for them.

I wish I could offer more to those families. I wish that I could say that Ritalin has solved every struggle we've had. But I don't have a clear conclusion as to how we feel about it yet. I can see some great things happening for my Bubbly One, and I can see some other things that have us concerned that perhaps this isn't the right dose for him, or the right drug. He has been on his full dosage for five days, and after nearly two weeks we are still waiting and watching. Like anything in this blog, I can only describe our experiences, and I can only interpret how I think my son was and is feeling. I like to think that I'm very tuned in to him, and truly, I do know him better than anyone, but I don't always know what's going on in his mind, and I am the first to admit that sometimes I have no clue and I get it wrong. So here is the last two weeks, as I saw things.

Days One to Three
The first three days were terrible, and it really put Bubbly and our family through the wringer. Bubbly got the common side effects of Ritalin which were headaches and appetite loss, and stemming from that, nausea and possibly abdominal pain. He was irritable and so noise sensitive that he couldn't stand any sounds that his brother made, something we hadn't experienced since the first couple of months after The Little One was first born. My heart broke all over again at this and I nearly stopped it then. He was also eerily quiet (once the paracetamol had kicked in and his head wasn't aching). He had meltdowns after school, from the moment he got into the car and continuing for an hour or so after we got home, until such time as I was able to get some food into him because he'd be white as a ghost and shaking by that stage. School reported that he was very quiet and still, and that he'd needed the pain relief I'd supplied. He had concentrated well on his work, but he hadn't been his Bubbly self. He also struggled to sleep and was waking at 2-3am again, despite having his bedtime clonidine, and the "rebound" hyperactivity once the lunchtime dose wore off was as full-on as before taking the medication.

Days Four to Six
On day four the headaches seemed to subside, though his appetite diminished even further, so getting calories into him became a big part of our morning and afternoon/evening routines. I tried meeting him after school with a dietary supplement drink they use in hospitals here for patients with poor appetite and that seemed to help. Once he drank that he began to slowly eat and was beautifully settled and happy. For the first time in a long time I heard giggles and singing from the backseat instead of screaming and thumping, and the good mood continued at home though he grew more hyper as the afternoon progressed and woke at 3:20 the next morning. Despite that though, he was focused and interactive at feeding therapy- totally different from any other time when I've been involved in an activity at school. I saw him follow a six step visual schedule without issue, which he'd never done without huge effort by his support person (and huge resistance from him). Day six was uneventful.

Day Seven
We tried the afternoon dose on day seven, which we have the option of using or not using, and even though it was only a half dose it's not something we'll be continuing. It totally killed what little appetite he had, he couldn't sleep and he woke up wired at 2am the next morning and then was asleep again at 7, which then confused his day entirely, and also brought on the headache we thought he was rid of.

Week Two
From there though his behaviour at home has steadily improved. His eating is still a concern, and he is more difficult to settle for the night, though he is still out by 8:30 so we really can't complain about that, and the early mornings are down to once or twice per week. The Little One has been very unsettled and miserable due to teething and separation anxiety (the joys!) this week, and my Bubbly Boy has managed to stay calm through some very trying mornings. He's also interacting with his little brother again, something that had started to dissipate pre-meds and something that I was also very worried about. Now instead of ignoring him, or getting annoyed with him, he is smiling back and taking notice of the little brother who adores him, and who follows his every move. He's also clearly taking in a lot more and responding appropriately. We've seen an increase in his conversational language (it's still not much but enough that we've noticed). I've noticed more echolalia and scripting emerging, and he is copying the movements and following the instructions given on some of his DVD's that he watches at home.

I've also been able to take him out without major difficulty, and he's enjoyed himself and interacted with people when they've spoken to him, whereas before he was always too hyper and fixated on things to notice. His behaviour plans are working a lot better and he's understanding why things might not be the way that he wants them to be. For example, I took him shopping early one evening (during his "witching hour" actually, that's how good he's been) and the bakery where he always buys a donut before going into the supermarket was closed. Normally this would've resulted in a screaming, door-banging meltdown, but this time he actually listened when I explained that the bakery was closed and that the people had all gone home for the day, and he was easily redirected to the car. So with us, it's been mostly positive- not perfect, we've still had some good tantrums and plenty of hyperactivity of an evening, but the meltdowns have decreased because he is coping better with the demands being made of him, and he seems to be understanding what's happening better because he's slowed down enough to process things.

When he's not with us is mostly when we're seeing the things that concern us, particularly at school. The Bubbly One's school has been nothing but supportive and have worked with us every step of the way, but Bubbly hasn't seemed to be as happy in his school environment, whereas it used to be the place that brought out the best in him. Where we struggled at home, school managed easily and they'd seen very little of the behaviour that was the norm at home. The Bubbly One is one of those kids that turns up ready to work. He keeps it together all day long, then when he is home and feels safe the stress comes out. On Ritalin he is certainly focused and concentrating well on his work, but he is anxious. He is seeking reassurance and cuddles often, his hands are over his ears constantly and he is just not quite his usual bouncy, bubbly self. He's also not eating much at all and they are struggling even to get the supplement drink I'm sending in into him. He's also choosing "sad" a couple of times a week in his "feelings" part of his visuals that he brings home to talk about his day with us, but when he gets in the car he is happy and laughs at me when I ask him about it, so I'm really not sure what's going on there.

I can tell that his teacher is trying to be positive but that they don't think it's right for him at school, and I respect their opinion. They've done things with my boy that I've never been able to get him to do. But I also have to wonder whether the environment at school is contributing to his anxiety and noise sensitivity. His school has a lot of construction work going on and this means that the second we pull up in the mornings he jumps and covers his ears because he can hear power tools. Today (Day Thirteen), there was less mechanical noise at school and he had a great day with much less clinginess, and was much more "himself". Has his improved concentration been making those already feared sounds more prominent to him? His OT is inclined to think so. Perhaps it simply is an increase in anxiety, caused by the meds. It can be another side effect of Ritalin. I'm not sure, and it's what we're currently trying to work out. So for another week or so we will continue to watch, and wait.

So that's where we're at. Waiting, watching. I feel guilty for even writing this, given that it's not my body having to adjust to the medication, but I have to say that it's also been really difficult for Daddy and I. Neither of us slept much for the first five days, though we were exhausted. We were distracted as we went about our everyday work- for the first time ever I totally messed up our finances, paid the wrong bills and had to borrow money from my parents to cover our mortgage (thank God they can and did help), and Daddy, ever the perfectionist with painful attention to detail, was making mistakes at work. But more than those things that can be fixed, we were so desperately worried for our little boy. We love our kids more than anything on this earth, and we felt every cry, every scream of frustration and every babbled attempt to tell us what he was feeling in those first few days like a stab to the heart. Though I'm not sorry that we're trying this medication, I truly wish that there had been another way. I hate the "trial and error" of this process with a child who can't tell us much about how it is affecting him. I wrote back in June:

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.

Different medication, same emotions, only tenfold. But nearly two weeks later, I think, and so desperately hope, that we have seen the worst of this process. We see the paediatrician in a month for review, and if need be I can call him before then. We may need to reduce the dosage or try another medication if the side effects are too great. But for now, we watch, and we wait, and we hope.

Saturday, 5 October 2013

Our Time Will Come

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

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

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

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

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

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


Friday, 4 October 2013

"Come At Me"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Then my neighbour starts their chainsaw.

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

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

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

Saturday, 21 September 2013

Hope Deferred

"Hope deferred makes the heart sick, but a desire fulfilled is a tree of life." Proverbs 13:12 ESV

A little aside: I may lose a few people by posting a bible verse here, but this verse is one that sticks with me often when we're going through a difficult time or when The Bubbly One's progress seems to have stalled. I used to focus on just the heart being sick part of it which makes it pretty depressing, but I had it all wrong. Then I read a great article (you can read it here) which reminded me that "deferred" actually means that something will be coming later, not that it will never happen. I'm very impatient, particularly if we've worked really hard on something with our boy and everything goes pear shaped. But this verse reminds me that God's plans for my son and our family will come to fruition, just not necessarily on my schedule, and that having those desires fulfilled will be more amazing than I can imagine. :-)

Still with me? Thank you!

School holidays have started for my state in Australia. Normally this would have me preparing to abandon my personal Facebook to hang out on my Autism Bubble page as an act of self preservation. Although I do still have my moments, generally I'm past feeling like we're missing out on things by having a child with The Bubbly One's needs. He's happy with his life. He loves his therapies, his swimming and his respite days as much as "typical" kids enjoy their sports and after school groups, and I'd say he loves school better than 99% of kids his age! But there's something about reading about everyone's relaxing days at the park, bowling, movies, trips away and days at the beach that hits me really hard during school holidays. I'm generally a pretty positive person, and I like our life, but when we're having a tough day resentment and jealously can really sneak up on me when I see what the rest of the world is up to.

We avoid a lot of things in school holidays, in general really, but it's not because of my fear of what people will think if The Bubbly One has a meltdown. It's because I know that The Bubbly One will not cope and that he really doesn't need to "learn to cope" with that particular situation yet. A meltdown (or worse, a shutdown), isn't particularly pleasant for me, but it is excruciating for my son, and this is what I really struggle to make people understand. If my boy has reached that point of no return, then he has been stressed to his absolute limits. It doesn't matter if five minutes ago he looked like he was having a great time. Most people don't realise that a manically running around and laughing uncontrollably Bubbly One is actually starting to really stress out. They don't see that he now has tunnel vision and is totally unaware of any hazards, or anything really, around him. They don't realise that his flushed cheeks and his ragged breathing are all signs that his nervous system is under huge stress, and they don't see that the obsessive eating isn't hunger, but an attempt to calm himself and to focus on something other than the world that is overwhelming him. They think that his throwing sand or dirt, or flicking his saliva is him being naughty, and that he needs to be taught to behave, because "he has to learn somehow".

Instead, it always comes back to us being bad parents, or overprotective parents, or lazy parents who won't make an effort. Parents who let their child rule their life, or who use him as an excuse not to go to things. I'd like to think that I'm past caring about that but it does hurt. What gets to me even more though is the inability of others to consider and have any empathy for what my son is experiencing, and the inability to understand that this is what directs us when we're out, or in deciding whether it's worth even attempting something. We refuse a lot of invitations on account of The Bubbly One. We pick and choose our battles and we do our best to follow his lead. We also take a lot of risks and try things in the hope that he will find something that he enjoys. These risks may seem small to most, but for our family they can be huge and require a lot of thought and planning.

I'll be honest and say that I grow tired and anxious even thinking about the preparation and intensity of the support The Bubbly One needs just to keep him safe and semi-comfortable when we are out, and that's just to be present in that environment. Actual participation in an activity and interaction with others is often a bonus and that makes me sad even when we've managed to attend an event "successfully".

On top of his autism, The Bubbly One has a severe developmental delay. I hate throwing the word "severe' around all the time, especially as my boy has made so much great progress this year. We try to use the word "yet" when we say The Bubbly One isn't able to do something. But so much great work has been done to make people "presume competence" that it can be really hard for them to understand that some kids still need a hell of a lot of help to learn even the simplest of tasks. Add to that the sensory world in which my Bubbly One exists, and those things that most kids pick up seemingly via osmosis become huge. Even when we are somewhere that The Bubbly One is familiar with and comfortable, there is still so much work and preparation that goes into maintaining what he has learnt, and helping him to adapt to every little change that comes along.

So we watch him, we follow his lead, we break things down into tiny steps. We constantly survey the environment for things that have the potential to overload him or frighten him. His fear when it hits is all encompassing, and after five years I feel his fear as my own at times. They say that autism is like a different radio frequency, and when we are with our Bubbly Boy that is the frequency we need to be tuned into. It makes it difficult to follow a conversation or to relax. It makes it frustrating when people aren't hearing what we're hearing or seeing what we're seeing, and like an old style radio frequency, sometimes you need to find that exact place, try not to move, and incline the aerial ever so slightly to avoid the static.

I know that I am sounding very negative here, and I hate that, but it is our reality. It is physically draining because The Bubbly One is fast, he is strong and he generally needs physical help to participate and be safe. More so though, it is mentally and emotionally draining. The Bubbly One needs me to be positive and upbeat when we're out. He needs to me to be calm and confident regardless of how I am feeling on the inside. So that's what I do, and afterwards I let it out when I have some time alone. It's not all doom and gloom though. There is always the hope that he will have a great time, and when he does, and all goes smoothly the euphoria is like no other. If he loves something we will do it again, and again, and again! And when something goes well, we immediately start thinking of what else we can try. We swell with pride, and with hope that this could be the big breakthrough that will help us to do the things that so many other families take for granted. We truly do delight in the small things, and we always try to find the positive in a day, no matter what the end result has been.

But when it doesn't go well, it is bitterly disappointing. We blame ourselves for putting him in a situation he wasn't ready for, or for not knowing when was the right time to back off. The "Why?", or "What did we miss or do wrong?", and "How much longer?" questions loom. But then we do what we've always done when we've been dealt a blow and we need to process things. We go for a drive. We talk it out (I usually cry, more from exhaustion than anything). We look for the positives, and we do our best to learn from what didn't go so well. We hug our Bubbly Boy and tell him we're proud of him, and we swear to ourselves that we will try again when he is ready.

So these holidays, we may get out, or we may not. But I will try not to compare our lot to that of my friends. Instead of dwelling on what I think we're missing out on I will try to look to God, and then to focus on my family and on the blessings they bring to me each and every day of our journey. I will focus on my Little One, who makes my heart burst with every babble and giggle that escapes from his mouth; and on my Bubbly One, who lives with such joy, who makes me laugh loud and often, and who fills me with pride every single day. And I will continue to hope, and to trust that those desires will be fulfilled.    

"Hope deferred makes the heart sick, but a desire fulfilled is a tree of life." Proverbs 13:12 ESV


Monday, 9 September 2013

The Bubbly Tonsilloadenoidectomy

The Bubbly One has never been a good sleeper without the help of medication. It wasn't until I observed to his paediatrician that his tonsils seemed very large that I learned that there was a possibility that his tonsils and adenoids could be restricting his breathing at night, causing sleep apnoea and restless sleep. He was referred to the ENT at our nearest children's hospital, who got a brief glance at his tonsils, asked me some questions about The Bubbly One, and without any prior information described the ragged breathing, snoring, tossing and turning, waking up at the slightest noise or light, and hyperactivity we've come to expect from our boy. I was amazed that something as innocuous as large tonsils- even perfectly healthy ones could have this effect.

He told me that the tonsils would need to come out, but that they would try to only take half of them so that his recovery would be easier, and that he would, if necessary take the adenoids also while he was there, but that if he was having the sleep issues described then it was a pretty safe bet that they would need to go too. He also told me that there was a chance that the surgery might also improve the Bubbly One's speech and feeding issues, though of course there were no guarantees.

There was a long waiting list so I put the surgery out of my mind, until Monday two weeks ago when my phone rang with the news that some surgeries had been cancelled so they had an opening for The Bubbly One's surgery on Friday. In four days time! My nerves started a little, and I swung into action- meaning I picked up my phone to cancel the respite, swimming lessons and therapies we had booked for later in the week. I let the school know, and then I began to really worry. Not about the surgery itself, I trusted the surgeon. It was beforehand: fasting, waiting in a busy hospital, cannulas, anaesthesia.

And afterwards: my boy in pain, getting meds into him, the risk of infection or bleeding, a hospital stay (probably in a shared room).

And when we came home: what I could feed him that he would eat? No school. No therapies. No respite. No swimming. How long would he take to get back to the things that he loves so much?

What would happen with his behaviour? Would pain and frustration cause him to begin to lash out again? We'd had such a great stretch with behaviour lately, would this set him on a new course? How would I prepare a child for whom visuals just don't mean much yet, and who also struggles to process information given to him verbally?

So many questions.

So I did what most mums do. I Googled. I found out exactly what happens in the procedure- from a medical standpoint. I read conflicting articles about what can and can't happen afterwards, and a family member kindly told me about their horrific bleed as a child when their mother fed them a sandwich. But none of what I read or heard addressed what to expect for a severely autistic child having their tonsils and adenoids removed, nor how best to support them as they recovered. So I did the best thing I could've done and I asked a bunch of autism parents who I trust how their kids managed, and what words of advice they had for me.

Like all good autism mums they were honest, they told me the good, the bad and the ugly, but they reassured me. All of them told me that once it was over they were glad that it was done and that it would be merely a "blip on our radar" soon enough. They gave me lots of practical advice about what helped with their kids before, during and after and I took notes. I was able to sleep that night without stressing so much, and I woke in the morning to an inbox from an autism mum who I deeply respect with the best advice of all: "Just love him through it. Be there, that's all I could do...".

Surgery Day
On the day of the procedure it was tough. We had to make The Bubbly One fast from 7:30am (he was allowed water and clear juice until 11:30) and be there by 1pm. He hardly touched his breakfast so he was starving before long. We took him for drives to get him away from the kitchen when he became fixated on food, and Daddy and I also fasted so as not to upset him more. I finished packing, got The Little One organised for his grandmother who was coming to stay with him, and Daddy directed his nerves about the whole thing into madly cleaning the house and muttering about how messy we all are. :-)

The Wait
The Bubbly One literally bounced into the hospital when we arrived, with his harness on to stop him from running off, but also because the pressure of it calms him. He wanted to check out everything, because the Children's hospital foyer and walkways look like anything but a hospital. We went through admissions while he giggled and climbed all over Daddy, and he charmed the lady processing his paperwork. She warned us that there was a bit of a wait and told us that if The Bubbly One needed somewhere quieter we were welcome to wait in the area just near her desk. We accepted gratefully and settled in for a couple of hours wait. The Bubbly One roamed the waiting area, alternately watching tv shows on his iPad, looking out the window, lining up some cars I'd thrown in my bag as an afterthought and pulling the stickers off the nursing manager's door. He walked near the desks of the staff who had processed has admission with one of us in pursuit and they told us to relax. They said that we were in a children's hospital, that they saw disabled kids daily, and that the place was set up so that the kids couldn't hurt themselves or damage anything. They suggested that we let him wander out to the bridge, a glass enclosed walkway overlooking the floor below and the traffic outside and he enjoyed that. We took turns staying with him, because of course he wanted to climb on the side of the bridge to stick his head over the edge. We squirmed with the wait, but The Bubbly One kicked off his shoes and settled in for the long haul, remarkably relaxed for such a new environment.

The Anaesthetic
While we were waiting, the anaesthetist's assisting nurse came out to speak with us about The Bubbly One's preferences for anaesthesia. We were offered an oral sedative for before the anaesthetic, but when I learned that they would use a mask to put him to sleep rather than an IV I declined. The Bubbly One uses a mask for his asthma medication so this wouldn't be an issue, unlike getting him to take an oral medication while he was fasting (so it couldn't be hidden in food).

When it was time to go in two lovely elderly lady volunteers gowned me up and the anaesthetist asked me about The Bubbly One's communication. I told him that he was going to find it hard to follow a lot of what was said to him so to keep it as simple as possible and direct me in what they wanted him to do. I went to get my boy who was waiting outside with Daddy and showed him how silly I looked in my gown. He laughed at me and came through without any dramas. He even tried to say the anaesthetist's name after he introduced himself.

When we entered the first of the clinical areas The Bubbly One balked when he saw all of the medical equipment and began to whimper, so I distracted him by putting the hair cover on that they'd told me not to bother with, sang to him, and he relaxed a little. The anaesthetist showed him the mask without the hose attached and put it over my face and he touched it. I then sat on the bed with him on my lap. He fought me a little but not as much as I was expecting, and I hugged him snugly to my chest. We put the mask over his face and I asked him to blow really big (he then has to breathe in first) and I counted his blows just like we do for his asthma medication. He struggled a little, particularly as he began to feel sleepy and disoriented, and I just kept reassuring him until he went limp. He was out fairly quickly, but the sound of his breathing was frightening. I've been in a room with someone when their life support was switched off and the sound was exactly the same. My face must have shown my fear because they reassured me that it was perfectly normal and that he was fine.

As the elderly lady volunteers helped me to take my gown off I must have looked a little shell shocked (the breathing sounds were truly awful) and they too reassured me that he would be fine. They handed me a knitted teddy bear for my boy, and I didn't have the heart to tell them that the last teddy bear he'd been offered like this one had been thrown across the room at a nurse after he'd had blood work done. So I took it and put it in the Bubbly One's bag in the car, thinking that maybe his little brother might like it. Daddy and I had a late lunch, tried not to think about the surgery, and walked around until they called us about 90 minutes later.

Here is the major regret that I had all day: We weren't by his side when he woke up.

When we got up to the recovery ward another parent told us that she'd been there before and that they would come out to get us. So we stupidly waited, and we could hear a very distressed child inside. We squirmed but waited, and the cries grew louder, and more familiar.
"That's him!" I said.
"Oh. Maybe you should press the buzzer after all." said the not so helpful woman.
We buzzed and they let us straight in to find a hysterical and in pain Bubbly One being hugged by a nurse who was hard pressed to stop him from climbing out of the bed. When he saw us he half dove over the railings to me and clung to me, crying and writhing and trying to say "mum" while gurgling and straining at the pain each time he cried or tried to talk. I hugged him in my lap and rocked him like I had when he was a baby, and I cursed myself for not being there when he woke up.

We got an ice block straight into him and the nurse got him another. She asked me did I feel that he was in a lot of pain (Daddy huffed in disbelief that they'd even ask) and I replied as nicely as I could considering that I thought he'd surely be medicated for the pain already. She got permission for him to have OxyContin, an opioid, which he spat out. They waited a while and he didn't calm down much at all so after I convinced them that not much, if any had gone down, the doctor approved another dose via his cannula that he hadn't yet noticed was there. He was zonked within about ten minutes but he had me in a death grip. Daddy said that he would drift off to sleep but open an eye every minute or so to check that I was still there.

They had antibiotics ready to go via his IV but consulted us about waiting until he was asleep to start them, which we agreed was a better plan. But he didn't sleep. He was anxious and clinging to me until I thought to ask if we could use phones in there. I put "Little Ted's Big Adventures" on my phone and he allowed me to get off his bed so that he could be wheeled to the ward.

The Ward
Every time I looked at Daddy I could tell that he was fuming. The hospital staff, while respectful and asking the right questions, really hadn't seemed prepared for a kid with severe autism, though we'd clarified that it was on his admission forms and reiterated it with the staff. I suspect they thought they were getting a higher functioning kid on the spectrum, and because he'd waited so beautifully no one had been alerted to the fact that he might be an extra handful later.

Anyway, Daddy had steam coming from his ears after seeing him so distressed in Recovery and the staff seemingly unprepared for him. I was just glad that The Bubbly One had settled and was keen to get him changed and settled on the ward with his own bedding that we'd brought. Then the wardsman wheeled him into a room with six other kids, plus their parents and assorted siblings. We'd opted to admit him as a public patient rather than using our private health insurance so I figured that sharing a room was to be expected, it was only for one night and I expected him to sleep after the painkillers he'd been given. I was a little unnerved by the number of people in the room but figured there wasn't much that could be done about it now.

Then the boy in the next bed started to cough violently. As his mum helped him his toddler sister seized the moment and tore around the room. I heard Daddy mutter under his breath "F--- this, we'll take him home and look after him before he stays in here", and when the nurse came to settle us in he didn't waste a moment. He firmly but calmly (surprising because I knew how frustrated he was) explained that The Bubbly One has severe autism and a developmental delay. That he was confused, that he is loud, and that he would more than likely be very unsettled once the meds wore off. He told her that the nurses in recovery had struggled to manage him when he was distressed and that I would be hard pressed to keep him in bed on my own once he had to leave, so the other five patients in the room would be disturbed, most likely frequently throughout the night.

The nurse was excellent. She could have told us to put up, because he was there as a public patient, but she didn't. She got permission straight away to use one of the isolation rooms so that we could have our own room, and so that I could use the bathroom in the room (he tried to climb the bed rails if I tried to leave him). She asked all of the right questions and she shushed me when I apologised for inconveniencing anyone. She was gentle and calm with my boy and we couldn't have asked for better care. She didn't fuss when he tried to pull his cannula out a few hours later (yelling "owwww")  and it took three of us to bandage over it, or when I had to buzz for them to bring him food and drinks as he wouldn't let me leave him to go to the kitchen, and she thoroughly briefed the night staff who were so good to us. They were busy, yet nothing was too much to ask.

We were informed that he'd been given half of his usual clonidine dose during surgery and that the doctor didn't feel that the rest was necessary given that he was on strong painkillers that should put him to sleep. Only they didn't. After he'd tried to pull the cannula out there was no way anyone was going to try to give him IV antibiotics and fluids via a drip. The nurse said that she'd not seen another child still awake after that, even if he was reasonably still, so she called the doctor and got permission for him to have the rest of his dosage. Sure enough, he was out like a light within half an hour. They got the fluids and antibiotics into him and everyone relaxed a little.

Although it was mostly a sleepless night for me, I did get to at least rest for most of it and either read or use Facebook on my phone. Those wonderful mums on the other side of the world checked ion on us and Bubbly's OT also texted me frequently throughout the night to see how we were both going which I really appreciated, especially as it was a Friday night and she has a life! Daddy called me to reassure me that my Little One was settled and not fretting without me there, and I reassured him that our big boy was resting comfortably and that he was being well cared for.

And he did rest comfortably. He slept through loud beeping alarms next to his head. He slept through frequent checks of his pulse when his heart rate got a little low, and he even kind of slept through me giving him paracetamol in ice cream at one stage. We'd thought to get an extra long iPad cord so that his battery would not go dead, and I kept it on his bed so that he would play with it instead of going for his cannula or the many buttons on the equipment nearby, so when he did wake briefly he'd turn on a tv show or some music then drift off back to sleep. I kept him snuggled up in his favourite furry blanket and used a Toy Story pillowcase from home, which he'd pat occasionally. And the other thing- that teddy bear that I was so sure would be rejected. He used it for a pillow all night. When he was awake he cuddled it and if anyone moved it he grabbed it right back. It's been with him constantly at home too and he even says "Teddy" and cuddles and kisses it. :-)

I dozed a little between 2 and 4:30am when I woke to the nurse taking his obs again. He was awake and quietly watching the iPad. After some more ice cream and jelly he drifted back to sleep and I tried to caffeinate myself with hospital coffee, which was useless of course. The doctor came by before breakfast and instructed me to keep up the paracetamol, make him rest (I inwardly snorted at this), and no school, swimming or sport for two weeks. He instructed me to use a saline nasal spray to help clear behind his nose and in his throat (um, okay that'll be a breeze), and warned me that the smell would get pretty bad from both his mouth and his ears since the adenoids live near the inner ear. He also said that he could go home as soon as he was able to eat breakfast.

Breakfast came and went. Of course The Bubbly One wouldn't eat anything on his tray. But he did drag me repeatedly to the ward fridge for more ice cream and jelly. He was getting antsy and telling me "bye bye" and taking me to the door, yet we still hadn't been told that we could go. The nurse had said that she was happy that he'd eat and drink just fine at home after seeing his over-enthusiastic consumption of ice cream but we were still waiting. I let him out onto the wards's enclosed balcony where he ran back and forward and pushed some kids bikes around until he was tired. He sat with Teddy and his iPad on a chair and started to look frustrated, and play with the bandage over his cannula. So I decided to speed things up a little. I called Daddy and said they'd be doing his discharge papers soon enough, then we went to find more ice cream. But this time, instead of holding his arm to stop him from running in the corridor I "accidently" lost my grip.
He raced up the hall past the nurses' station, nearly crashing into an older nurse. She looked at me. I apologised and she winked and said "You look like you're ready to go home Bubbly. I'll get your paperwork done right now". Success! The nurse came and removed his cannula without any major dramas and Daddy arrived soon after.

And Afterwards: One Week Later
I'll be honest. The week after surgery sucked. But not because he was in horrendous pain. Not because he had a bleed or infection and had to be readmitted. It sucked because I had a child with a very high pain threshold who didn't feel the need to rest, who didn't understand that he could only eat soft foods, and who grew incredibly paranoid about anything I gave him to eat or drink for a couple of days thanks to a relative telling him "Mummy's getting your medicine right now"- not once, but five times as I was concealing his pain meds in his ice cream. Most of all though, he missed school and he was ticked off that he was stuck at home.

We had a return to the tough behaviour I wrote about here. Lots of hitting, screaming, slamming doors and banging on pretty much everything, and there was nothing that could really soothe him, he just needed to let it all out. When he wasn't raging he was happy- and crazy-hyper. There was no middle ground, just one extreme or the other. I asked his OT could he come for a gentle session six days after surgery which she thankfully was happy to do, and on the morning of the appointment I sent her a video of The Bubbly One running and yelling from one end of the house to the other with the warning "Brace yourself!". She has a sense of humour thankfully and even she, who understands him so well was stunned to see how active he was. I rang his teacher that afternoon to discuss the prospect of him coming back on Wednesday the following week and she laughed at him joyfully wreaking havoc in the background and said "You're too nice to us. Send him in on Monday. We'll follow his lead and give him whatever support he needs. He'll be fine.". 

Overall, it was tough, but it was worth it. Ten days post-op and The Bubbly One's speech is picking up. He is using more words, his speech is clearer and he is starting to use some two word combinations- notably "no meh-cine"! :-) This is the first time he has said he doesn't want something and used that word in a verbal refusal! He also seems less noise sensitive. He's still ready to cover his ears when loud noises come, but when he hears them he's not visibly starting or looking to hide. I'm not sure if this is related to his adenoids coming out, whether they were perhaps distorting the sounds, but I'm curious enough to ask when we see the ENT for follow up. And his sleep: he's waking earlier! Not ideal because he was already an early riser, but his sleep is of a much better quality. His snoring is nearly gone and his breathing is even and quiet- to the point where I have to be right beside him to hear it when I check on him at night. He's also not tossing and turning anymore, and when he goes to sleep it is without the disorientation he used to experience as his clonidine kicks in.

So, what did I learn for if he ever needs surgery again in the future?

1. To advise, put in writing and scream from the rooftops if necessary that my son is not only autistic, but severely so. Not to be difficult, not to try to get special treatment (though the single room was a Godsend), but to help the staff to understand his needs and be more prepared for his care. That being said, the hospital were great at asking what they needed to know and really did listen to me.

2. To make sure that I am by his side when he wakes up, not outside waiting anxiously to be let in.

3. To take my own coffee- it's not just an autism parent cliché, it's just a necessity. ;-)

And most importantly: "Just love him through it. Be there". That's all I can do.  

Friday, 23 August 2013

Food, Glorious Food (Or Not)

 There was a time when I envisaged myself happily preparing food for my family in my kitchen. My kids would eat what I put before them and ask for more. There would be no separate meals prepared. My children would not love all vegetables of course, and I would be okay with this and simply dish up those that they would eat, just as my mum had for me, and I would not worry about their nutrition because fussy kids only became that way because their parents let them. Right?

And then I had a child with severe autism and sensory issues.

The Bubbly One didn't always have a limited diet. I admit to being very pleased with my three year old who would eat a napoletana pasta with baby spinach at the shops instead of McDonalds. He may have had autism, but he was a "good eater". I'd worked with adults with autism who had limited diets, but it never occurred to me that my own child would head down this path. As a toddler he ate most of what we ate, though I had to cut his vegetables really small and mix his food together. But from the age of about three he began to drop things from his diet, just a few things at a time. It was subtle at first. He'd "go off" something for a while, then eventually he'd take it back up again, but then he wouldn't do that either. He just kept on dropping foods until he go to the point where we are at now. His paediatrician has told me not to worry as long as we are supplementing those things he lacks, but it's still stressing me out in a big way. We are hopeful that we will be able to participate in some feeding therapy at school over the next year or so, but that's still depending on funding and we can't afford to do it privately at this stage.

The Bubbly One's diet is as follows (and yes, I know it could be worse, that's what I am afraid of):

Thank God he eats fruit! Watermelon, rockmelon, kiwifruit, red grapes and berries are in. Apples and mandarins are on their way out. Green apples, green grapes and bananas (except in cake form) are offensive. I am grateful that he eats fruit as he eats no vegetables except for cucumber, which must be quartered, sliced and the skin left on so that he can then bite the flesh, leaving the skin. If he was a celebrity this would totally be on his rider! He also likes to chew on raw carrot but spits it out, leaving chewed carrot everywhere- but I let him in the hope that he may actually swallow some.

White bread, raisin bread (untoasted at the moment), toast with jam, peanut butter or vegemite. Cheese has disappeared from his repertoire unless it is baked on in copious amounts on a cheese and bacon roll or a cheesymite scroll (which must be from Bakers Delight and NOT home made). I suppose pizza probably fits here too sometimes, but I'll get to pizza in a minute.

Plain chips, Doritos, popcorn, biscuits. He'd also eat lollies or chocolate all day so they are literally locked away if we buy them.

Ice cream, Ice cream and more ice cream (thank goodness as his meds go in there), flavoured milk and thickshakes. If not for Sustagen he'd have nothing for breakfast some days.

Diet cordial, flavoured milk, juice- yes I tried juicing fruit and veg. He took a few sips, was finished and then the kilo of food we'd juiced went to waste. He does drink V8 fruit and vege juice so I stock up when they are on special. He has his iron supplement in a small amount of coke. Likewise if he needs medicine, it goes into coke. Don't judge. We tried EVERYTHING and desperate times call for desperate measures! Incidentally, caffeine does not affect his behaviour, which old schoolers will say is typical of those with ADHD.

McDonalds Cheeseburgers (but hold the bun) and fries, fish and chips, KFC popcorn chicken. I make damn good burgers, fish, chicken schnitzel and fries, but these are all unacceptable. He was having oven fries, fish and chicken nuggets but he's recently gone off them too. So most nights, toast and fruit it is. No meat, no rice, no pasta, no vegetables.

Cakes, biscuits and muffin bars
I need to return to work to keep up with his demand for these things, BUT miracle of miracles, he will deign to eat my baking, which brings me to my mission of the moment: hiding vegetables, fruit and whatever the hell else might be a little bit good for him in all manner of cakes, biscuits and slices (without Daddy and I gaining ten kilos each from sampling them!).

So as you can see, his diet is not totally limited. It could be a lot worse and I'm sure I will hear from those whose kids only eat 3-5 foods, or have had to move to tube feeding because they eat nothing. Likewise, I'm sure that I'll hear that gluten and casein are evil so let's get my thoughts on that out of the way:

I've seen "the diet" help where GI issues do exist, which makes sense to me. If you feel like crap all the time then obviously you're going to struggle to do things, and if you can't tell anyone that you feel like crap you're obviously going to act out to communicate that. But, I've seen adults with autism and no GI issues put on the diet after years of "regular" eating, stick to it religiously for years, and guess what? It made no difference to them whatsoever (except for when their friends had McDonalds and then it was ON!). Except for the bonus of having a healthier diet because fast food was off the menu I honestly didn't see an improvement in their communication, nor a reduction in stimming and challenging behaviours. So I'm a little bit cynical about the whole diet theory and while we have considered it, we don't feel there is enough evidence that it will help our child. Bit if it's worked for you then I'm very happy for you.

Now that's out of the way, back to my new mission. 

I'd pretty much given up on the idea that anything I cooked would be appealing to my son. But then, not so long ago I bought this book that I'd heard so many great things about and I began to hope a little. I won't name it, but it was all about making the good stuff that we want our kids to eat undetectable in those foods that our kids supposedly love. There are heaps of The Bubbly One's sweet treats in there, but I was determined that what he ate at least looked like dinner. So we started with pizza (oh so healthy, I know). The Bubbly One loves garlic and will happily eat a cheese and garlic pizza, so I followed the instructions and made a mixture of white, supposedly mild tasting vegetables (yes, I had my doubts also). I then mixed minced garlic into the mixture and made my boy a cheese and garlic pizza. When it was cooked I tasted it first. The garlic was too strong for me, but how he liked it, and knowing that it was there I got a very mild taste of the vegetable mixture. I presented it to a hungry Master Bubble who took a bite. He chewed. He swallowed and he looked at me. He took another tiny bite. Lifted the cheese and showed me the base with a look that clearly said "I KNOW it's there". Then he ate the cheese and went and dumped the vegetable-laced base in the kitchen sink.

I tried several of the hidden vegetable recipes with foods that he liked, and I stopped keeping score because he knew every single time that I cheerily served him something I'd made that it contained something he wouldn't normally eat. Not only did I stop keeping score but I kicked myself for even attempting it because I now had a food sleuth on my hands who suspected foul play at every meal time, and we suddenly were limited to toast and fruit for dinner. Which brings me to the next stage: forget "real food". Let him eat cake!

The Bubbly One's snack foods were sending me broke so I thought I'd start baking again, and why not try to get something extra into him when he least suspects it! 

I found a recipe for chick pea and choc chip cookies, and since I had an oversupply of chickpeas thanks to that book which swore they were easy to conceal I thought "Why not". Last night when the kids were in bed I cooked up a batch. They smelled great, looked unassuming, and I found a willing guinea pig in Daddy. He took a tentative bite, inhaled the rest and reached for another one.
"Can you taste the chickpeas?" I asked him.
"The what? They taste like Subway cookies!"
That was a good sign. I tasted one and could absolutely tell they were there. What a way to ruin what was otherwise an awesome cookie! Still, I figured I had nothing to lose and "accidently" left the container on the bench for The Bubbly One to find. I acted like I was grudgingly giving him one when he demanded it in the morning (you should see the con job I do to get meds into him!). He took a good long look. He ate the choc chips off the top, and then he polished off the rest in Cookie Monster fashion leaving crumbs everywhere. So I offered him another and he ate that too. Win!!

Of course, my next step was to brag about it on my Facebook page, then I packed some for his lunchbox and wrote a note for his teacher in case they thought they contained nuts, also asking her to let me know if he ate them or just crumbled them up. At the end of the day his teacher told me "He loved them, but he picked out the chickpeas".

Mum: 0 
Bubbly: 543.

Monday, 12 August 2013

On His Terms

We're enjoying a busy but relatively smooth patch inside our little bubble at the moment so I haven't blogged for a little while. The Bubbly One seems to be going through a bit of a change which has been mostly positive. I've written a lot about The Bubbly One's sensory world, and before my eyes I'm seeing a shift towards a calmer yet more intense little boy. I'm both interested and anxious to see which direction things will go for him, and therefore us even as I delight in the small yet significant progress he's made of late. It's also led me to have a good long think about what's happened to get him to this point. It could be his medication, it could be his amazing school, his excellent therapists, the awesome reserves of energy and patience of his mother (HA! I think not!). All of these (excluding the last one) contribute, but I'll come back to what I think it is. First, a little update on where The Bubbly One's at right now.

After preparing for sensory warfare for the Winter holidays we had by far our best holidays ever just hanging out at home. He wasn't remotely interested in any of the messy sensory activities I had for him, nor anything that could be construed as "work" (i.e. structured activities, puzzles, etc.). We spent a lot of time outside, we watched a lot of DVD's and he used the iPad a lot. On the iPad he mostly did preschool level literacy and numeracy stuff and worked his way through a few hundred flash cards and some communication apps- all by himself. He loves these apps and he mimics the words and I can see him applying what he learns so I pretty much give him free reign with the iPad at home. He relaxed (as much as a sensory seeking mover and crasher does), he played with his baby brother, we had a play date and we just enjoyed each others' company.

He started respite once a fortnight for a few hours for the first time ever. He's had both familiar and unfamiliar staff. He's travelled in unfamiliar cars (a big deal!) and he's accessed a new environment. We worried about how he would cope with any of it- and he was better than fine, he loved it!

And the BIG thing; he started swimming lessons. As most Aussie parents do I started swimming lessons with The Bubbly One when he was eighteen months old. It was a disaster. While the other babies and toddlers giggled and happily kicked and blew bubbles my boy screamed and cried non-stop. In hindsight, the swimming centre was a sensory gauntlet for The Bubbly One, and by pushing the issue as long as we did thinking that "he just has to get used to it" we did a lot of damage. It took us two and a half years to get the Bubbly One into a pool again without traumatising him, and from there it took us another year to get him to stop clinging to us and hold my hands while he floated with a buoyancy vest. I had serious doubts about anyone's ability to help him to learn. But then we learned the hard way that he needed to learn after a weekend at the beach where The Bubbly One, in full meltdown, ran repeatedly into the waves over his head while Daddy desperately chased him and pulled him out over and over again. The entire experience left us shaken, particularly as The Bubbly One is a runner, and more recently a climber. Both sets of grandparents have pools, and we have water near our house.

I put him on the waiting list for private special needs lessons that week and a couple of months later a vacancy came up. It also happened that the Bubbly One's school had an intensive swimming scheme starting the week after his first lesson, so I put his name down telling the school that if we or they didn't feel that he was coping we'd back off and just go slowly with the weekly lessons. But as he seems to be doing a lot lately the Bubbly One has surprised us. He didn't freak out as we entered the Hydrotherapy centre, but instead jumped up and down excitedly (his pool ID photo is a hilarious blur!). He coped with the larger pool environment for school swimming and has even used the disabled change rooms despite his fear of public bathrooms. It will be a slow process as The Bubbly One has a severe receptive language delay as well as proprioceptive and gross motor planning issues, BUT he is trying so hard and he is having a blast! I watch him each week with his instructor who is a lovely and gentle but firm older lady. and every time he does something new I hear "teh-mum, teh-mum" (Tell Mum!) echoing across the water. He is so proud of himself and I could just burst watching him conquer another of his fears.

We've also had some small gains with his receptive language and following instructions, and some significant gains with his speech, including some echolalia which has me watching what's coming out of my own mouth! Now we've had The Bubbly One in speech therapy for three and a half years, and honestly, I don't know that it has really made that much difference to his communication. It has helped us as parents to understand how he communicates, and how to respond to him and provide the best environment for him to learn in, but as far as him actually gaining and retaining new skills? I think it is pretty much down to him being at that stage of his development and wanting to learn, which brings me to a phrase we have used with relation to The Bubbly One for a couple of years now: On His Terms.

The Bubbly One saw an awesome speech therapist in his preschool years. She wasn't an autism specialist, something she reminded me of regularly, but she was creative, relaxed, and more than a little "out there"- and The Bubbly One loved her. When he couldn't sit still she worked movement, singing and sensory breaks into his sessions until he reached the point he is now at, where he arrives ready to work and pays attention until that work is done. One day we were completing an assessment for his school placement and she said something that has always stayed with me. She said "He is able to do most of this, but it must be on his terms". It was said a little tongue in cheek, but it was so true of my bubbly boy. We try so hard in this world to bring our children to a place, or a standard, which is perhaps not where they want to be, are ready to be, or even need to be.

We are reminded constantly that our journey with autism is a marathon, not a sprint. We love our children, and we want what's best for them and we want it now, often not realising that they are quite content to enjoy their present as we rush them towards the future we want so badly for them. How many parents beat themselves up because their three year old is not in the 20, 30 or 40 hours of early intervention the latest study says that they need? How many of us feel the need to justify the hours their child spends using technology? I did it in this blog post! We keep at it because we want to believe that if we just work hard enough at it then things will get easier, yet we make things so much harder for ourselves and our kids because we forget to follow their lead.

I gathered enough activities to fill every moment of our recent school holidays, and on the first day my son looked at them and did them. Just for me. With silent tears rolling down his cheeks the entire time. I backed off and let him just be for two weeks, and each day he brought me the iPad with flash cards and numeracy apps and laughter and hugs, and the words started to emerge. We sang silly songs and when I asked something of him he tried his best to do it because he was ready for my voice. When he struggled, he took my hand and said "come", and he accepted my help instead of retreating inside of himself. We followed his lead at the pool, and rather than fear and anxiety we have seen him so happy and proud of himself as he learns.

It seems so simple, yet I need to be reminded over and over again. I can't do it for him, I can't make him learn, and he doesn't need to "just get used to it". He may not do something now. He may not do it next week. But he will do it, and he will do it on his terms.


Friday, 26 July 2013


The Bubbly One entered this world after a fairly routine pregnancy followed by a slightly complicated delivery. I was healthy and fit. I worked up until seven and a half months (though increasingly behind a desk with no shoes on and my swollen feet up). I had some blood pressure issues later on but nothing dangerous. During the delivery his heart rate dropped and he lost some oxygen, though he never actually stopped breathing. This happened while I was pushing and we were past the point of no return to go for a caesarean so the OB got him out as quickly as she could, he was suctioned, spent half a day in a humidicrib and the next five days in special care because he had a poor sucking reflex. Other than the poor suck, which was also attributed to his having a very tiny jaw there was nothing clinically there to indicate that he was anything other than a healthy baby who'd had a bit of a rocky entry into the world.

Knowing what I know now, I can see autistic traits in The Bubbly One from birth, particularly with regards to sensory issues. We had a baby boy who wanted to be wrapped so tight I wondered that I was constricting his circulation sometimes. We joked that we were restraining him as we cuddled him so, so tight to settle him as he writhed and fought against our hold- until we applied just the right amount of pressure and he would finally relax and cuddle into us. He wouldn't sleep in his cot, but would lay happily in his pram which seemed so tight and uncomfortable to us. We moved house when he was three months old and when I returned with him to our old house to clean he screamed as he looked around to see everything different. At six months there were more days than not where the only way to settle him was to put him in the baby swing or to take him for a drive. In both cases the movement calmed him and he would drift off to sleep as I cried and wondered what I was doing wrong. At our antenatal class reunion he was the only baby who seemed to be in pain around the other babies. I left embarrassed and disappointed, and joined a mothers group to teach him to socialise and to give me some friends who maybe understood how I was feeling- surely mine couldn't be the only baby like this? He improved there, or maybe it was I that improved. I convinced myself that it was just a personality thing. He grew faster than all of them, but he trailed behind them in development. I watched the other babies become interested in each other and he seemed to be in his own little world.

He made sounds, so I thought he was okay. Looking back I see now that the sounds he made carried no interaction with us. There wasn't the intent to communicate something with us- something that I've only really realised since his little brother came along. I don't recall him responding to his name, more to our voices. He couldn't stand to be with anyone but us or his grandmother, and family gatherings were torturous as he would scream at anyone who looked at him, especially if it was a male with a loud voice. I would bump into friends at the shops and he would cry as soon as they looked at him. We thought that he just didn't want to stop. We thought that he was in pain- that he was teething, or tired or had wind. We just didn't understand why he was so miserable around other people.

By the time he'd turned two I was worried. A lady who helped at the play group I took him to in my desperate attempts to help him to socialise casually mentioned (more than once but without mentioning the "A-word" other than once in passing) that he reminded her of her daughter. I'd see the other kids his age following instructions and talking and it hurt. He wouldn't sit for story time, he wouldn't even attempt any of the singing and dancing and craft time was a tantrum filled disaster. I was worried but everyone assured me that boys take longer to do these things than girls, that my brother and cousin hadn't talked until later, that maybe he just didn't enjoy the playgroup. I mentioned that I was concerned that he walked on his toes and was told that I was paranoid because I worked with people with autism. Someone actually said to me "it's like you want him to have it". Yep, really.

When he turned two he struggled through his birthday party while the other two year olds played happily with each other and used his toys how they were meant to be played with, and I convinced my husband that it was time to look into speech therapy. He started with a lovely young lady, fresh out of university, totally unprepared for an uncooperative two year old, and I left more and more deflated every week. I understood what she was trying to do by playing with him but he didn't want a bar of it. He threw tantrums throughout most sessions and couldn't stay on task. He was assessed as having a severe receptive language delay and moderate expressive language delay and I was devastated. I hadn't realised how much he should be understanding. The speechie referred us to an early childhood screening service, who said there were certainly delays across the board. I hadn't realised that he moved awkwardly other than the toe walking. I thought that he just didn't perform for strangers, not realising that he should be able to. The report strongly recommended that we seek a developmental assessment with a view to gaining early intervention services.

You would think that with all of my concerns I would have run with this information. No. I got angry. How dare they write him off at just twenty seven months. Denial hit in a big way. I saw my dearest friend look at me with pity as I struggled to manage a total meltdown when we took our kids to see a show together. I still remember seeing the words in her eyes that she didn't say because she didn't want to hurt me when I said that we would give him a bit longer to catch up at his own pace. I wasted, yes wasted nearly six months when we could have been getting early intervention. I still cannot remember what prompted my husband to comment that something was wrong and I mentioned the report that he, in his own denial hadn't read. We were at a park watching him run around awkwardly and I commented that maybe he had a form of cerebral palsy as well as a speech delay and that I would make an appointment with the doctor. Perhaps he just needed some physiotherapy as well as speech. The word autism screamed in the back of my mind and I silenced it brutally, but I still took him to our doctor and told her that I thought there was something more than speech and that I was worried about his cognitive development. She actually said to me "You know that if he is diagnosed with (pause) autism, that there is a lot they can do for him while he is young". She referred him to a developmental paediatrician who she said would listen to me.

I spent the next two months before the appointment with the paediatrician psyching myself up. I set about preparing my husband and family for the word that would change things forever- all the while trying to ignore thinking about what it would mean for me. It wasn't until the day before the appointment as I cried on my good friend and manager at work's shoulder that I admitted that I was scared. I knew what autism was. I already loved people with autism, but I had seen the effect that raising a child with autism to adulthood had on families. I wasn't scared for him- I was scared for us. I can't even remember what she said but whatever it was, it helped and I was calm going into the appointment.

I spoke for five minutes with the paediatrician (who did listen) while he observed our son, and he said "I think you are right. He is on the spectrum, though on the mild end". He gave us our paperwork to access our funding, his receptionist took us through the steps that we needed to take to register with the autism advisory service and we went on our way.

I sat in silence in the car for a while until my husband asked if I was okay. "Yeah, it just sucks to be right" I replied. My parents rang and I said the same to them. My dad said exactly the right thing "It doesn't change a thing, he's still the same boy that we know and love and we're here for him and for you". I still cry remembering those words two and a half years down the track. And when I hung up the phone that's what I did. I just cried for my boy, and I cried for us. I cried for the road ahead and for the life that I thought that we would have. We drove for hours, because that was what we did, and still do when we need to deal with something hard. We stopped to let our newly diagnosed son stretch his legs and we both hugged him. And I cried some more. He laughed at my tears. He touched them, and he gave me a hug and a kiss, comforting me- as he still does today.

We struggled on, though by this stage we had an amazing speechie who I'd found via word of mouth. She did not specialise in autism but she was easy going, creative and "out there" and my boy LOVED her. He couldn't sit still so she worked movement, dance, singing and what I now know as sensory breaks into his session. When I butted heads with his preschool director who steadfastly refused to meet his needs because any difference in service to the other children wasn't "inclusive" she assured me that I wasn't being a "difficult parent". She used her contacts to link us up with an amazing OT, who opened my eyes in just one session to how my son's sensory world was affecting him, and for the first time I saw my son laugh and engage and talk with a stranger the first time that he met them.

We moved on from The "Inclusive Preschool" after a few more turbulent months. We just played for four months. We went to therapies. I learned everything I could about sensory processing disorder and how it related to my son and autism, and I left my job to be a stay at home mum. We began early intervention with a vengeance and in a supportive preschool environment my son thrived and was happy. We didn't see a miraculous acquisition of language, independence or social skills, though he did progress he continued to fall further and further behind his peers. A "severe global developmental delay" was added to his diagnosis and the paediatrician used the phrase "more autistic" when he saw The Bubbly One for review. We were told that a special school was the only suitable option for his education and had everything we were doing for our son critiqued as being inadequate when he was assessed for school placement. But things were looking up.

We found other parents on the same path as us, who shared in our triumphs and who were there in the dark times, not always with wisdom, but with comfort and complete understanding. New friends who we probably would never have known but for our children's shared neurology.

We found a school that's more than "special", where our son is valued and supported and has developed a love for learning.  Where he has friends, and is already surpassing everyone's expectations of him. We've found professionals, who care about our boy and take such delight in seeing him progress, professionals who have become friends and who give so much of themselves to our son.

We brought another baby boy into our family, and we have watched the most beautiful loving relationship develop between our little boys despite so many obstacles, which you can read more about in this letter I wrote.

We've grieved for the life that we'd planned- for us and for our son, and new layers of grief will be exposed from time to time. We've had moments of frustration, of anger, of helplessness and despair. But those dark times exist in such contrast to the overwhelming joy our son brings to us. The excitement and fascination as we see him beginning to speak, wanting to let us into his world, and to join us in ours. The hope as he learns faster than anyone expected or planned for. The awe when see people visibly moved when he touches them with affection, and when his laughter spreads to all of those around him. He has a power and an influence over people which is effortless and a part of who he is. We watch him teach our families, as he has taught us, a new depth of love that we've never known, and I have watched him change people's attitudes and responses to autism in a way that no level of advocacy and "educating" by me could ever do.

My dad said "Nothing's changed", but he was wrong. We have all changed. That word, spoken on one beautiful autumn day: Autism. A diagnosis? A way of life? A disability? A gift? Whatever it is today, tomorrow, twenty years in our future, it isn't what has changed us. What has changed us- all of us, is the beautiful boy that we all love so much.