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.