A Chop In Time

Mention the word "haircut" to a forum of autism parents and you'll typically hear responses like these:

Parent #1. "My kids are just fine, we started young". 

There are not many like this, and they don't mean to get your heckles up with the "we started young" bit. To them you can say "That's great, you're really lucky!", and move on.

Parent #2. "Oh they're just horrific. My child doesn't cope at all. But we gave him the iPad and it totally distracted him. Have you tried that?"

I'll leave you with your thoughts about the "horror" of that one. ;-)

  

Parent #3. "They used to have a really hard time and we dreaded them and had to do it ourselves for years. It took a long time but they slowly coped better and aren't too bad now."

I love this parent. I have much to learn from them!

Parent #4. "It's horrible for him and for all of us. He melts down/vomits/faints because he just can't cope, so we hold him still and do it as quickly as we can when we absolutely have to. It's just awful to see him so distressed by something we're doing to him. We're going to have to do another one soon (shudders and comforts their child who is upset just from hearing about the subject)."

Until today this was us, and I'm desperately hoping today wasn't a one-off! 

A "HC" as it has come to be known in the Bubbly household, strikes fear into all of us. Bubbly doesn't cope with the noise of clippers, the feel of hair on his skin after it's cut, a cape or other light fabric draped over him, the feel of vibration on his head, or the light touch involved in trimming near his very sensitive ears. He doesn't seem keen on the sound of scissors near his head either. We're also pretty sure he associates the word "cut" with pain- hence the acronym we use around here, and he knows that scissors can be dangerous. He also doesn't like to be still for long or restrained (of course, who would?). 

So a haircut was something we dreaded. We tried distractions, rewards, heavy work/movement/deep pressure to help his regulation, we tried social stories and videos. Nothing helped, and with this kid the idea that "he'll get used to it if you do it regularly" is laughable. The more we did it, the worse it got, to the point where the words "hair, cut, or haircut" in his earshot would cause him to whimper, cry, and run. So when we'd psyched ourselves up as much as we could, we'd give his Clonidine at bedtime, and when he was really out, Daddy would sneak in and trim off as much as he possibly could. Even this was a fraught exercise as Bubbly would still react in his sleep to the light touch and sound of the scissors. So after Daddy did the ninja thing we'd continue to psych ourselves up, and the next morning we'd try our best to prepare him (usually making him more upset), then I'd hold him on my lap with his weighted blanket for deep pressure and to stop the hair getting on him, and Daddy would clip it as quickly as possible while Bubbly screamed, shook and sobbed his way through it. Nothing would distract him, and nothing we'd say would make it easier for him. We'd be near tears ourselves sometimes. It was horrific, and Bubbly would be really upset with his dad for a couple of hours afterwards, which was just heartbreaking for him. Then, we'd have to look at his very short buzz cut and feel awful until it started to grow out because it really didn't suit him (though he loved the feel of it and would run his hands over his head all the time once he'd recovered from the trauma!).

So Bubbly hadn't had a haircut since Christmas. It's July 1 today. He'd had a reprieve after the window incident in May as his cut (that word again!) had to heal up, so his hair was really long and very thick. It actually looks nice longish, and he's letting me wash and brush it with a therabrush without drama these days, so we were talking about how just a trim with scissors would be ideal- if only he'd keep still and let us. 

Bubbly's been a lot more settled and able to concentrate with a new medication he's on, so I thought it would be worth trying some YouTube videos of kids having haircuts to prep him a little. Foolishly, I did a search in his presence, and the first one was a clip where they used clippers and it was in a hair salon. All wrong on all accounts and he ran away crying. Then I happened to mention my search for a "trim with scissors" video to some autism parent in a Facebook community, and my wonderful friend at Suburban Mamma offered to make one with her kids for us! She sent it through this morning and after I'd watched with a giant smile for my friend and her gorgeous, happy kids, I gave it to Bubbly who watched it out the corner of his eyes until the end of the first child having his hair cut. Then he whimpered and couldn't watch anymore. I thought that was enough for now and we could build up to him watching it comfortably. 

I put it out of my mind and we had an unusually great grocery run (without his harness!). When we got home I put The Little One down for a sleep and put on the new Wiggles DVD we'd bought at the shops. As it loaded I was playing with Bubbly's very long sideburns. Playing with his hair has desensitised his head a lot, and we've been talking about just trimming near his ears a lot with him. Because he's loving the song "A Sailor went to Sea (Chop/Knee)" I've been saying "Chop" instead of "cut". Well he twirled those bits of hair with his fingers, pulled on them, looked me in the eye said "Cho!". 

"Really? Is that okay if I try?" 

"Cho." A little less emphatic this time, but still...

(Uncertainly) "Okay, lets give it a try."

I got the scissors, and he whimpered when he saw them and shuddered when they went near his head, so I stopped. I snipped a tiny bit of my own hair and showed him. Then I slowly snipped a little bit of his hair, and made a huge fuss of him when he kept still, even though he still shuddered a little and his hand went up. Slowly, but surely, he let me trim around and above both ears. I was so excited and told him over and over how proud I was of him and he bounced with excitement. We sent Daddy, his grandparents, my friend who made the video pictures and we kept on celebrating!

Then I sat on the lounge looking at him, and I thought "I wonder if he'll let me trim the back too". He did, and then I kept on going. We took breaks when he needed to, and I rewarded him with lolly snakes at each break. But over two and a half hours (and with some help from Google as I'd never cut hair before), we ended up with a full short hair cut, and one very, very proud little boy! He even held still for verses of "Twinkle Twinkle Little Star" which I sang as I trimmed the more delicate areas near his ears. I wasn't game to do the front so I left it for Daddy to style when he came to visit tonight, and what do you know, Bubbly takes the scissors off him, gives them to me, aims my hand at his head and says "Mum". 

So it looks like I'm going to have plenty of opportunity to hone my very poor hairdressing skills! I really had no idea what I was doing, but Daddy said it looks great, and that it's still better than any cut he's had before (It could've been his relief at dodging the "HC" bullet, but I'll take the compliment!). As far as I'm concerned, the huge milestone that is a calm, meltdown and tear-free haircut makes it the most beautiful hack job I've ever seen! 

SO, if you related at all to parent number four in the beginning of this post, there is hope, and now that I've blogged about it, I'm so desperately hoping this wasn't a one-off! Stay tuned!

  

And That's Okay

"My entire life can be summed up in one sentence: It didn't go as planned, and that's okay." -Rachel Wolchin

I saw this saying on a meme today. I love it, and it truly is my life. It also reminded me of the brilliant psychologist I saw not so long ago who used to finish a lot of sentences when we were taking stock of where I was at with "and that's okay". I don't know if she realises how much she says that, but it's a really nice place to be, when you can look around, look back, and look ahead, and truly feel okay, even when things are uncertain. Those were comforting words when my world was spinning, and they still are when I'm having a rough day or week and when I'm inclined to worry about what's around the corner for us.

We're in a good place right now, my boys and I, even with a lot of uncertainty ahead. For an anxious being like me, it's surprising to feel almost excited about the unknown. We're moving later in the year after we sell our house (but staying local), and my parents are moving- not locally, but a couple of hours away. Bubbly will be therapy-less for all of next term for the first time in four years, and we're jumping through hoops to get The Little One diagnosed. There's a lot happening, but I can see the positive in all of those things even though each will involve their own struggles.

Bubbly has made some really nice progress over the last few months, thanks in part to us finally finding an ADHD medication that really works for him without wreaking havoc on his body, and also due to a whole lot of people working really well together and with him, to make his life and his learning as comfortable, and "Bubbly centred" as possible. I mentioned in my last blog post (about the month from hell, read it here), that with his ADHD under control Bubbly is really able to concentrate and is looking, for lack of a better phrase, "more autistic". He's a lot more rigid and noticing things which previously he was too distracted to take in before. So we've had to be more vigilant about explaining routines to him, and we've had to be very patient with him when he gets stuck on something that might seem minor to us. While it's meant more severe meltdowns, they've been less frequent, and afterwards he seems to be able to process what's happened and debrief with me, which is huge!

Bubbly's autism is a real strength for him when his sensory world and ADHD are managed well. When his world is calm and ordered he is more able to focus on what he needs and wants to focus on. His school are amazing at teaching him in all of the ways which appeal to his brain's style of thinking and processing information, and they too have noticed a vast improvement in his concentration and learning without all of the distractions that he struggled with before. His days are still not easy, and he's had some tough moments at school and at home, but it's exciting to to see so many little breakthroughs in the midst of it all.

In particular, he's made some great gains with his communication. I am LOVING that I can have a slightly more detailed, and almost two-way conversation with my boy. Not so long ago Bubbly could only communicate about his immediate wants and needs before he needed space and processing time. Now he will sit on my lap for a few minutes to talk about his day, or about stuff that's made him happy, or stuff that's bothered him. Sometimes he'll respond with a part-word, he'll squint a little and cock his head to one side when he's thinking about something and wants to hear more, and he'll smile into my eyes and give me a big hug when I've understood him, or when something I've said has made him feel good. There's still a lot of guesswork and elimination before I work out what he wants to talk about, but he gets so excited when I get it right. It just melts me, and I'm sure he's well aware that I'm learning whole new levels of communication now too. All of a sudden I'm having to explain things in more detail to him, in ways that he can connect with, and I'm having to get back from him that he's understanding my ramblings! I'm sure he's always understood what we've said to him, but the level of thinking he's able to do now, and his speed in processing what we talk about, and his responses have improved so much. There is so much in that head of his, and he's just so keen right now to get it out, and to take in even more!

The challenge of this sudden burst in Bubbly's desire to communicate more with us is that he is still non-verbal. He can use some part words, respond to parts of a song, and mimic words when he hears them, but he needs a tool for spontaneous language, and that's where his newfound concentration has helped immensely. Bubbly has been using TouchChat on his iPad more at school and it's finally really gelled for him that he can use it to communicate with us, and that we can also use it to help us to understand him better! He's also understanding the concept across other apps too, and is having a great time "nagging" me with Tap to Talk (we're buying the TouchChat for his home iPad in a couple of weeks, it's expensive), and I am SO excited to see him learn to use it more and more.

Finally, I am seeing such a love and adoration for his little brother, and so much tolerance of, and understanding of how he is experiencing the world at the moment. Which brings me to what's consumed so much of my brain and my time lately: 

My Little One is autistic. I'm sure of it. We knew he had developmental delays, but until recently I'd been told that while he did seem to have sensory issues, and language delays, he wouldn't qualify for an autism diagnosis yet as he was too young, too easygoing, and not withdrawn enough. I was told to come back when he was two but that I was clearly doing all the right things to engage him and to encourage his learning. In the last month or so though, the traits that no one else seemed to notice have become more prevalent, and more pervasive. The staff at the special needs playgroup we attend have come to agree with me, and we've started the long process of getting him assessed for autism. We're probably looking at a formal diagnosis in the next 6-12 months depending on waiting lists.   

I've started many a post about this, and every time I've deleted it. You see, before The Bubbly One was diagnosed people used to tell me that I had nothing to worry about. That boys just take longer to learn how to talk, that they're more physical than girls. With Bubbly I was told that I was just a paranoid first time mum, that he would catch up in his own time, and that I was paranoid because I'd worked with people on the spectrum. 

It's amazing the levels of denial that people will experience about a child that isn't even their own. I've been there again in the last six months with my Little One. It's ironic that my experience as Bubbly's mother is what tipped me off to those subtle indicators in my Little One, yet those who would compare him to Bubbly tell me that there is nothing there, and that my concerns are unfounded.
"He doesn't look autistic."
"He just hasn't got the example to follow. Bubbly's like a toddler himself and he doesn't talk so he doesn't have someone to copy"
"Maybe he's just copying Bubbly, that's common when the older sibling is on the spectrum, it can lead to a false diagnosis."
"But he's so different to Bubbly."
"If he is, he's definitely high functioning."

I get it, really, I do. People know that parenting an autistic child is hard. They know how much I love Bubbly, and they see how invested in him I am, and how hard we've worked to get him where he is today. They also remember the person I used to be. They remember me being ambitious, doing well in my studies, going to university and working my way up to management. They see that I am a single parent now, and they think that another child on the spectrum will all be too much.

They think I deserve a typical child.

I don't.

I have the children I am meant to have, and to me, they are exactly who they were created to be. Made in God's image and with a purpose for their lives, they have gifts and abilities which I am so excited to see develop in them. In Bubbly I already see an incredible ability to give comfort, and to know when someone needs it the most. I'm watching the progress I've described in this post, and it makes me burst with pride; and seeing all of this in him, as my baby begins his journey, gives me so much hope for the people they both are, and will grow up to be. I also know that these boys have changed me and made me into the person I was created to be.

There is a five year gap between my boys, because we knew the odds, and we waited until we were prepared to welcome another child on the spectrum if it were to happen. And welcome he is. This precious little boy gave me a second chance. A chance to enjoy being the mother of a small baby, without the fears and constant worry, and feelings of failure I endured first time around. I wrote about Bubbly's early years before his diagnosis here, and our experience is so different this time around. Autism isn't some unknown specter, but a familiar and respected part of our world. I no longer grieve for the life we could have had. I'm quite happy with the one I've been given. I know there are incredible challenges and I know that I will always be parenting in seemingly a different universe from most parents. I know that we will have to work hard and wait patiently for those things that so many take for granted. I know that I may have to care for my boys for the rest of my life. 

The reality is, that none of us know what life will bring. I can only work with today, and focus on being the best I can be for the children I've been entrusted with, where they're at right now, and where I'm at right now. We have our tough times. Those times when I am exhausted and the day seems unending. When government support is declined for a toddler who is too young to have his therapy needs recognised without a diagnosis. When I feel guilty for not wanting to sing and dance to another children's song while my child just stands there amongst their dancing peers, or when I have to coax my reluctant toddler to do yet another craft he can't yet manage. 

There are times when I feel like I have nothing left to give, and then, just when I need it most we have our moments of beauty. A shared smile and belly laughs between brothers who are so different, yet so alike. A hug and a part-word to convey a little boy's joy at being understood after a rough day, and a toddler's first dance to a familiar tune. Our days are full of these moments, and they are timely reminders when I fall into the trap of worrying about our tomorrows. Our future is uncertain. It always will be, and it will never go as planned, and that's okay.  

Surviving The Month Of May

I was having a discussion with some friends the other day about the levels of supervision our kids require. It was prompted by a scary near-miss with a wandering child at our play group, and of course some parents were wondering aloud how the mother hadn't noticed their toddler had disappeared. One of my friends doesn't have kids with special needs and has been able to teach her kids to stay in sight of her. Another has a son on the spectrum who she has to hover over because of his sensory issues and struggles relating with other kids which can lead to him melting down quite suddenly.

Me? I make a helicopter mother look distant. Both of my kids are runners, accident prone, and have no awareness of anything but what they're experiencing or looking for. Bubbly is six and still often wears a harness while shopping, and I have little doubt his brother will need it by the time he no longer needs it. On the rare occasion we go to a playground I check the fence, I stand by ready to catch my kid as they step off the edge of a platform into nothing. I'm there when they run under the swings, oblivious to the fact that the kid swinging really high will knock them flying, and I'm there when other kids push past them because they take too long sitting down to go down the slide. Usually I'm the one being ignored or backchatted by the little darlings when I ask them to wait their turn too. I would love to sit and talk to my friends while our kids play, but that's not going to happen anytime soon.

At home I can sit, but not relax. As long as my kids are up I have to be "on". It's exhausting, and every now and then I think to myself that maybe I should leave them to their own devices and let them learn to survive without me for a few minutes. Sounds easy, right? Because you can't wrap your kids in cotton wool. You can't put a helmet on them (The Little One's physiotherapist laughed and told me he's too top-heavy), and you can't always be there to protect them. Plus, you'll become a nervous wreck.

Well, I'm not a wreck, but I suspect my nerves are still recovering from my kids' antics and incidents this month, and since I deal with traumatic events by writing about them, here's our incident quota for the Month of May!

The First week of May
It was almost time for Bubbly's bus to arrive. I have this thing about not going out to the bus in my pyjamas, even in my driveway. My life is chaotic, but I like to at least look semi-together. I was half dressed when I heard The Little One start to wail. He wails at everything. He's either happy, or catastrophically wailing, usually over a piece of paper not flapping how he'd like it to. So I didn't run to see what was going on. I quickly finished and then went to see why he hadn't stopped crying yet.

My blood ran cold. I found him with his leg trapped under Bubbly's recliner that he likes to tip and rock on. Bubbly was oblivious to the commotion and watching The Wiggles quietly on the chair. I freed The Little One and checked him over for injuries. Everything moved okay and without hysteria from him, I couldn't see any marks on his leg, and he calmed down within a minute or so, so I thought he'd had a very lucky escape. Bubbly's bus came, I took him out while carrying his brother. Then we went inside and I set him down on his feet. He cried straight away and couldn't put weight on his leg at all.

By the time we got in to see the doctor The Little One was able to walk a little when I took most of his weight. There was slight bruising, but nothing looked broken or swollen, so she gave me forms for x-rays and said only to bother getting them if he deteriorated. I made him rest and gave him lots of TLC, and he didn't deteriorate, so I breathed easier. But the overprotective, anxious part of me won out and the next day I took him for the x-rays "just in case". The radiologist told us to stay until she'd had a look, and when she returned gave me the good news that nothing appeared broken or worth worrying about and we were fine to go home. That afternoon The Little One started running again out of nowhere and didn't seem to be in much pain at all. So I relaxed and was thankful, because it could have been a whole lot worse.

The Second Week of May
Nothing major this week. I had my best Mothers Day ever, and for the first time Bubbly seemed to get it was a special day for me! We got some assessments done for The Little One (which I will post about shortly), and to my very great excitement he was given a place in a playgroup for kids with additional needs at the wonderful preschool Bubbly went to for Early Intervention and his final year of preschool. Bubbly was also in a spectacularly good place. It seemed that his new medication (Strattera) was finally settling in his system, and he was calm, happy and doing great work at school and in his therapies. I actually posted just how great he was doing and started to think maybe we could relax a bit with him.

The Third Week of May
 All hell broke loose with The Bubbly One.

Never, EVER post or share how great your child is going. I asked for it really!

Bubbly's medication has done wonders for his concentration and focus, but without the distractions his world was full of he's suddenly noticing everything. We've never thought he was an overly rigid kid when it came to routine. Bubbly was always fairly easy to distract. It was only really his sensory quirks that he would perseverate over. But with this new focus has come a fair amount of anxiety over where things are or should be, and what should be happening on certain days. It was like he suddenly got "less ADHD" and "more autistic", if that makes sense. It was fantastic for his learning, but we suddenly had to deal with a lot more meltdowns around things that weren't even noticeable to me, and our preventative strategies weren't doing much at all. He was constantly anxious about where his iPad was at all times, and this expanded to include my iPhone too. Several meltdowns were over him not being able to take them into the sand pit, or me having to check a message. School weren't having any issues, and we all thought that maybe he was just tired and letting out his stress after keeping it together so well at school.

 Bubbly's meltdowns have always been mostly noise and lots of banging the wall or furniture with his hands. If we stayed out of his way then he wouldn't target anyone. But these meltdowns brought a new depth of frustration, rage and aggression. Even more difficult was that even a tantrum over something minor could escalate to a full blown meltdown in seconds which would take 30-45 minutes to subside, and during which I was a frequent target. Afterwards he was so upset that he'd lashed out, especially the one time he pushed his brother and realised that the'd scared him.

Something had to be really wrong, so we went through all of the health related things first, and realised that he wasn't drinking much, and that his bowel habits had slowed right down. This was an expected side effect of his meds, but without enough fluid we realised he was possibly constipated, which is really unusual for him. We started treatment for that which did it's job (in "spectacular" fashion) in a few days.

Then there was the incident on the bus.

I saw on the Monday afternoon that Bubbly's iPad had been taken off him on the bus. When I asked why I was waiting to hear that he'd thrown it, but his attendant said that he was biting his buttons off his shirt and chewing his car seat. Bus staff are there for transport, not to know the ins and outs of our kids, but I didn't feel that taking Bubbly's iPad was an appropriate response to what he was doing. It had nothing to do with him chewing, and he isn't able to understand that losing his iPad is a consequence of that; and secondly, if he's chewing things then that is a sensory seeking, stress relieving behaviour for him, and not something that he actually realises is "naughty". If it was happening regularly, and I'd seen it on that other seat several times before, then it was quite possibly related to Bubbly's sudden anxiety about where every device in the house was. When I asked him about it he got really upset until I told him I would speak with his school about it- and then he relaxed visibly and just collapsed into a big hug. I love that he knew that they would understand!

So I spoke with the school who were wonderfully supportive (of course), and we put some other strategies in place to assist with Bubbly's need to chew something. A chewy pendant is working well so far. His bus driver was very apologetic and concerned that Bubbly had been distressed. He also said he hadn't realised Bubbly's iPad had been taken and promised it wouldn't happen again. He's also really curious about sensory stuff now and is asking lots of good questions, so I am educating him for two minutes each morning and afternoon. The attendant wasn't happy that I spoke with the school and ignored me for a week, but she's slowly come around!

The Little One also managed to hit his head on his cot at some point through the night this week, and woke up with a giant bruised egg on his forehead, which he also fell on later that week, landing on the tail fin of one of Bubbly's planes, making a nice cut over the bruise. I got some "nice" looks in the shops that week!

The Fourth Week of May
The Little One turned eighteen months old, so I took him for his vaccinations. The doctor asked for his x-rays of his leg. I told her that I was told there was nothing wrong so I hadn't gone to pick them up- and then I learned that the radiologist missed a tiny fracture that the doctor found the next day. Feeling like the most negligent mother on earth I went to pick up the x-rays, sent photos of them to his physio and returned to the doctor the next day. Both reassured me that there wasn't a lot to worry about and that it was easily missed. The doctor said she'd have plastered his leg had we realised, and the physio laughed, and said "Can you imagine what damage that child could do with a leg in plaster?". No one seems overly concerned though and we go back for more x-rays next month to check that he's healing okay. I'd thought I was overreacting even going for the x-rays in the first place!    

And just to top things off...
Bubbly was relatively calmer, having his routine settle down, his system "cleared" and his ipad untouched, until Sunday night as I was preparing his dinner. Arsenic hour is right before dinner time in this house, so I was relatively organised, but apparently not enough for Bubbly. He wanted his garlic bread out of the oven and cool enough to eat NOW. He'd eaten a punnet of strawberries already (great dinner, I know. Don't even go there!), and I'd managed to hold him off, though his whining was getting more and more urgent. He took issue with my choice of his usual plastic plate, and presented me with a very breakable porcelain one, which I explained wasn't safe as I put his dinner onto the plastic plate- and he looked at me, belted the fridge door, screamed and RAN.

I didn't see it, and I'm glad I didn't because the sound of breaking glass is still haunting me. Yep, he thought about it, and he charged at the window as he would a wall. The momentum must have carried his upper body into it and he was on his feet inside when my brain realised what I'd just heard. I ran to him to check his hands and wrists for blood, and saw a tiny bit of smeared blood and some hair on his hand. Then he whimpered and put his hand on his head, and I saw a long cut oozing blood. Thankfully Daddy was there at the time and one of us grabbed a clean towel for the bleeding. We did the "hospital or ambulance" debate in about 2 seconds and I called Triple Zero (Australian emergency number).

The paramedics were amazing. We'd stopped the bleeding within a few minutes so they said to relax and let Bubbly calm down and be comfortable letting them look. They reassured us that they were due to finish soon and were happy to wait as long as he needed, which turned out to be a while because Bubbly was pretty freaked out, sore and scared. We ended up giving him some pain relief and his bedtime meds an hour early in the hopes he'd fall asleep. He didn't, but he saw the bag I'd thrown together in case we had to go to hospital and decided he was going to Daddy's. We buckled him into the car where the paramedics got a good look and determined he had a deep scratch but not a cut needing stitches. They pronounced him a very lucky boy who'd probably have a good scar, but told him that "Chicks dig scars". They instructed us to keep it dry for a couple of days and call again if he grew disorientated or started to bleed heavily, then they wished us good luck with him and left.

So that was "The Month of May". Bubbly has recovered well, and he's off the hook for a haircut for even longer now- in fact, his too-long hair probably saved him from a worse cut on his head. The Little One enjoyed the excitement of the paramedics immensely, and Mummy and Daddy have almost recovered from the trauma, though we all shuddered at the sound of the broken glass being removed when the window was replaced. The Bubbly One has not charged at a wall since, and I'm desperately hoping that he has made the connection between his wall/window crashing tantrums and getting hurt. We're also revisiting the visuals that have never been particularly helpful for him in the past and hoping that his new found concentration helps him to more effectively manage his anxiety and frustration, and hopefully so that he can give us a clue about what's on his mind before things escalate too much in future.

And what have I learned? That my kids are still going to get injured even right under my nose! Seriously, this whole month has probably made me more vigilant about what my kids are doing, but overwhelming as it has been, everything could have been SO much worse. Sometimes survival is a victory in itself, and if we can look back on the last few weeks and manage a relieved smile before we tackle whatever's coming next, then I think we're doing okay.

Happy Sad

The Bubbly One is a musical boy. By that I don't mean that he's a savant, but music is his thing. Most of his vocabulary is in song form. I can give him a verbal instruction half a dozen times, and he might respond to part of it. Sing an instruction? He just seems to get it, and he acts on it, whether it's an old instruction, or a new one. Music calms him, excites him, and provides him with a link to the world. Throw his name into a song and he thinks it's hilarious and will want you to do it again, and again, and again! Sing anything from Shrek, The Wiggles or Sesame Street and he'll do his best to join in. What he lacks in words, he more than makes up for with enthusiasm!  

Music has a similar effect on me, though I cannot sing to save myself. I associate songs with times, places and people. A passing phrase will remind me of a song I know, and some songs make me very emotional. I know that there are many other people like this, but tonight I saw it in my son with a song that has always "got me", and it blew me away.

Bubbly found iTunes radio on my phone, which had a Muppets station. It turned out The Muppets were the radio DJ's, which was very cool. But then Kermit singing Rainbow Connection came on. This song is one that I've always loved, and which I have a really emotional response to. I have no idea why. I saw The Muppets movie that it was in when I was really little, so maybe it's something from then, but I digress. I paused in the kitchen when I heard it start, and then I heard it. My boy singing along, in the sweetest, most innocent tone he possesses. There were no words coming out, but the sound was beautiful and it came from his heart. After a week filled with him yelling, and occasionally screaming, all I could do was stand there in awe, and just listen.

Of course, I downloaded it straight away. And he played it over, and over, and over again. I can listen to it over and over again, so that was fine, and I sang along with him as he began to dance around the room.

"You like this song Bubbly?"
He stopped twirling and listened.
"It sah!"
"It's sad?"
"Sad"
And he began to twirl again.
And he played it again, and again he stopped twirling here:

Have you been half asleep
And have you heard voices
I've heard them calling my name
Are these the sweet sounds that called
The young sailors
I think they're one and the same
I've heard it too many times to ignore it
There's something that I'm supposed to be;

He'd stopped in front of me and looked into my eyes.

"It's sah, it sad"

I didn't know what to say. Bubbly has never identified an emotion before. He was relaxed, more so than he's been in a couple of weeks. He was smiling, and I really don't think he felt sad, but I think he was identifying that something in the song had touched him, and I said the first thing that came to mind.

"It is kind of sad, but happy sad."

The swaying and twirling recommenced as he sang along, again with no words, but beautiful pitch.

Someday we'll find it
The Rainbow Connection
The lovers, the dreamers and me.

I don't know whether it was the right thing to say, in fact saying "happy sad" was probably a pretty foolish thing to say to my autistic son, who struggles to convey his emotions. But it seemed to make sense to him, because he didn't stop at that point any more.

He just continued to twirl, and sing. It was beautiful, and I could have watched him feel that music all night.

Champions

Autism Awareness Day has been and gone, and I have to say that this year, I actually got into it a little. I didn't light it up Blue, though Bubbly went to school dressed in blue (not his uniform), with a gold coin donation for an autism charity. I didn't wear blue, and my puzzle piece necklace didn't look right with my outfit, so I went without. But the day stood out for me, and I actually had a good feeling about it. I shared some stuff on my personal Facebook page, and on my Autism Bubble page, and I avoided all talk of awareness, acceptance, toning it down, lighting it up, etc. What I did, was celebrate my son, and everyone around us celebrated him with me.

I'm certain that there were people who went through April 2nd without a thought given to autism. But in our autism bubble it seemed like everyone at least acknowledged that there was something special about the day, and more importantly, they acknowledged that my son is someone special. It doesn't come from a place of pity, they are genuinely happy for him when he achieves something new. When I bump into people I connect with on Facebook, they ask about him, and they've remembered things that I have shared. Things which I wouldn't have thought others would see as anything significant are mentioned with huge smiles and encouragement.

My boy has champions everywhere, and yesterday, on April 3rd, after all of the fuss had settled down, I reflected on those who've invested so much of themselves in him, and who have championed him over the last three years. The people who are paid to do a job, but for whom their work is so much more than that. We're often so quick to complain, to tell our horror stories. I've done it myself, and I still feel the need to tell others about "The Inclusive Preschool" where Bubbly was treated so poorly. But I really think that we need to celebrate the people who don't just work with our kids, but who give so much of themselves in what they do, and who treat our kids like they were their own. I've written about Bubbly's amazing school, but yesterday, as I watched his OT manage a truly "impressive" meltdown with compassion and understanding, it occurred to me just how blessed Bubbly is to have had so many incredible people in his short life, so I thought I'd write about some of them too.

To backtrack, the meltdown was similar to what we've been dealing with on a daily basis for about a week now. There's been a lot happening for Bubbly. He's into week three of a new medication, which is looking promising but which is having some effect on his moods, eating, sleep and bathroom habits. Not massive effects in themselves, but together, enough to upset his balance. He's also had some changes to the days where he sees his dad, and his teacher's been away. I've also had a lot on my plate, and I don't doubt that he's picking up on some of my anxiety as he's always been very tuned into me. So, the meltdowns have been understandable.

On this day Bubbly had been awake since 3am. He'd held it together all day at school and he was keen to go to OT- but we were early. It's easier to wait in the car with the two boys, and he was happy with the ice at the bottom of a drink I'd given him- until he tipped the ice onto the seat, which was covered in sand, and I threw it out. I couldn't let him eat it, but he wanted to, and that was it- a tantrum started.

His OT arrived then and helped me get him inside, and when we got up there I gave her some money for something she'd picked up for The Little One for me. Clearly I wasn't thinking, because Bubbly rips paper to calm himself down these days. Of course, he wanted to rip and bite pieces off the money, and when he couldn't do that he lost it, and the tantrum became a meltdown. He screamed, he hit himself, he crashed into his OT, he hit out at her and he cried. It was heartbreaking, and I felt hideous for setting him off after he'd done so well at school and for ruining his OT session, which is one of the highlights of his week.

Bubbly's OT is amazing though. I have her to thank for so much of Bubbly's progress, because she understands the sensory world that he lives in, and she's shown me and others how to meet him there. She didn't see a spoiled kid having a tantrum over something small, she saw a little boy who'd just been overwhelmed by his day and his surroundings to the point where he just had to shut down. She reassured him and made sure he was safe until he'd managed to calm himself down (which he did!), and when he was able to respond she offered him the option of staying to play, or going. He plopped himself down on a big inflatable ramp and patted it to indicate he wanted to stay, and she followed where he led. There'd been a point where we'd thought the session was a write-off and we'd have to quit, yet he went on to have a great session. Instead of leaving upset and with the memory of a bad experience, Bubbly walked out of there relaxed, happy, and even talking a little. At home he was chilled and had fun playing with his brother, with the item the OT had picked up for me (saving me a long trip somewhere also- she's awesome!).

This wasn't a one off. Bubbly's OT has brought him to that happy and connected place many a time after a hard day. She is someone we are so fortunate to have found, and who has become a friend as well- and there are others. 

Like the speech therapist who spun him on her chair and bounced and danced with him when he couldn't sit still, who met him where he was at, and found him ready and willing to learn in that place of movement and fun. Who took as much joy from those hard-won first words and followed instructions as we did.

Then there was the team at my four year old Bubbly's second preschool. After such a horrible experience at his first placement, he found a second home, with staff who were patient, understanding. They took the time to get to know the little boy beneath the anxiety, sensory seeking and hyperactivity, and I felt like I was leaving him with family each day. There were tears when he finished to start school, but it was his early intervention coordinator who had me blinking back tears the day I watched her dance with my son and sing to him "I can be, anything I want to be"(1), because she really meant it for him, and every day she taught him with that mindset. We're still in contact with this amazing lady, and the director of that special preschool, and I can't wait for the day when I place my Little One in their care too.   

Finally, there is Bubbly's favourite respite worker, who goes above and beyond every time she works with him, who gives he and his brother a gift each Christmas and birthday (despite me telling her not to!), who follows my page and checks up on us after a rough day, and who has presented me with many a coffee when I've dropped Bubbly off after seeing a very early morning post on my facebook. This amazing young woman, who I am also blessed to call my friend, has a knack for making every moment with my son a teachable moment, and she does it in such a way that he thinks he's just playing with one of his favourite people on this earth! And the most amazing thing about her- she has no clue how rare her ability to get in the moment with her charges, and help them to the place they want to be is. Incidentally, she is also bright blue from head to toe this month, in a show of support and solidarity to the many autistic people she cares so deeply about- and I'm so thankful that my son is one of them.

I could go on. We've only been on this journey for three years now, yet so many have given of themselves to help my Bubbly Boy make his way in this world, and they not only champion my son, but they also support me. These amazing women aren't just professionals who work with my son and accept a fee, or a wage for their time, they are also a part of our lives now, though many don't work with him anymore. They commiserate when Bubbly is having a hard time, and they cheer with us when he learns something new. They value his beautiful spirit, and they admire how hard he works every single day to be present in our world, which is often so overwhelming to him. They have become trusted friends, who've seen me worried, tired and at my wits end, and who encourage me that he'll get through whatever it is. And when he's done just that, and I say how amazing he is, they just smile, because they know that already.

(1) "Starfish", Genevieve Jerub, 2008 

When You Don't Feel Like It

It may surprise some people to learn that there are times when I just don't want to talk about autism. I've had people warn me not to let it take over my life; say that I'm "obsessed" (I prefer "passionate"); and several remind me that "all kids do that sometimes you know". 

Like it or not, autism is a big part of our world. There's a reason that this blog is called "The Autism Bubble", because that's what we live in a lot of the time. But truthfully, there are times when, for my own sanity I need to burst from the bubble and not talk/read/think or breathe autism. So there have been plenty of times when I have avoided bringing autism into a conversation about my kids with someone, because:

1. I didn't think they'd have the first clue what I'm talking about

2. Bubbly wasn't there, I had things to do and I just wanted to forget about autism for five minutes

3. I really just couldn't be bothered.

It's okay to feel like this, and sometimes we need to switch off. But today I learned a bit of a lesson, and it made me think. 

I was tired. I'd just been to counselling where The Little One hadn't slept in the pram as planned, so I'd had to concentrate even harder than normal while ensuring my happy, but very active and curious toddler didn't destroy anything. We both needed food and a rest, but I really had to buy nappies, so we'd stopped at the shops on the way home.

I was wearily getting the heavy pram out of the boot (again) when I saw her. An old neighbour of my parents' who I hadn't spoken to in years, but always waved to as I drove past. I didn't remember hers' being a happy home. Her former husband wasn't a nice man, her kids played with me sometimes when we were younger, but they all went off the rails at some point. She was always out in the garden, or walking the dog. She was friendly enough though and clearly lonely, and I knew she'd probably want to chat. Eye contact was made and we both smiled and said hello politely, but I confess that I was hoping she would keep walking to work (she was in uniform).

She slowed and walked over..

"You've had another one?" She said, obviously not in a hurry.

"Yep, number two. Another little boy". I lifted The Little One out and she stayed as I strapped him into the pram.

"He's a big boy. Your other son would be at school now wouldn't he?"

"Yeah, he's in year one this year. Growing up too fast." 

I waited, resigned. The next question is always "What school does he go to?" and the conversation turns to autism as most people know it is a special school and not in our suburb. Usually I don't mind this so much, and I tell people how awesome Bubbly's school is, what a happy boy he is and how well he's going. I'm normally happy to do a bit of awareness raising. But today I was tired, and "talked out". I really wanted to skip it, but she surprised me.

"This one must have some fun with him. Do they play well together?"

I paused for half a second as I thought how to answer. Do I or don't I go there? 

Then I smiled, because my boys drive each other crazy, and I love it. The little boy who used to be on the floor screaming in sensory overload with every little peep from his baby brother now adores him and doesn't leave him alone. That easygoing little baby is now a strong willed toddler who is starting to make it very clear to his brother what he does and does not like (and he LOVES anything that is Bubbly's!). I couldn't be prouder of their relationship and how it has developed.  

I relaxed, and because I can't help myself:

"They do, and they drive each other crazy too. It's really beautiful to see them play together because Bubbly has autism, and it was a lot for him to adjust to when The Little One was born. They have a really special relationship now." 

Just like that, autism was in the conversation.

She smiled as that sunk in. "Does Bubbly talk?"

"Not really, though he's starting to pick up a few words and use them a little". I locked the car and we walked together.

"I have a grandson- well, Michael* actually has three boys, and his first has autism too. He doesn't talk either, and he doesn't really eat."

"Ahh, Bubbly's like that too"

"Does Bubbly go to (name of school)?"

My smile got bigger. "Yes! He does! They're so great with him."

"My grandson goes there too. It's a beautiful place."

It turns out that I knew him, though I'd had no idea who his parents were as I'd only met his other grandmother. He is a gorgeous almost-teenager who Bubbly did feeding group with last year. We had a great chat about how wonderful the school is, and she talked about her grandson, just like my mum talks about Bubbly, not dwelling on the behaviours, but speaking with love and pride of the happy boy with the wicked smile and laugh that she knows. She shared a funny story where he'd used behaviour to make it clear to everyone that he wasn't impressed with what was happening, and I laughed at the visual I had in my head as I'd seen him do the same thing at school. 

In more than twenty years I'd never really had a conversation with this lady, and I'd really assumed that she wouldn't have the first clue about autism. But she surprised me, and we had some serious common ground there. She mentioned a couple of other children at the school whose grandparents she knows from other places and she talked about how nice it is when she sees them, and they can talk about their special grandkids together. When we parted I had the biggest smile on my face, and to be honest I was pretty spun out.

It was a brief encounter, one that I didn't want, but which taught me a bit of a lesson. It's not always about raising awareness. Sometimes it's just about connecting and reaching out to someone you never thought you'd have anything in common with. Sharing a story, a laugh, and a "same here". Sometimes it might be talking to that person who is just plain hard work, or potentially wasting your breath on someone who just won't get it. But you just never know how the conversation might progress, or what you might learn about them- or yourself. 

Even when you don't feel like it.    

*name has been changed

   

Time Will Tell

It's been months since I've published a blog post, not because I haven't had anything to write about, but because there's been too much, and most of it I just couldn't share with the world, as much as there were times when I wanted to. Autism, always such a prominent part of our lives, has taken something of a backseat, as I grappled with things I never imagined I would have to face.

We've all heard the statistics about marital breakdown in families raising children with disabilities. I guess we're one of them now, though I can honestly say that the failure of my marriage had, and has nothing to do with autism or the demands of raising our children. Other, far more painful things had done their damage long before autism became a part of our lives, and left unhealed, those hurts slowly consumed everything and everyone in their path. I won't be writing about it as it wouldn't be right, and much of it is not my story to tell. I am finding my feet as a single mother, and my boys have two parents who love them, and who are doing their best to work together for them, and to be friends. Starting a new life is overwhelming. It's exciting. It's heartbreaking, and it's liberating. Where will we be in a year's time? Time will tell.

So, back to The Bubbly One, and autism and ADHD, which even in the background still leave their mark on everything! I realised today that I've really missed blogging, but my brain is also pretty full of other things, so I thought I'd ease my way back into the blogging waters by giving a bit of an update on where things are at. I'm also going to throw in a few shameless links to other posts since it's been a while since I've written.

The Bubbly One has started his second year of school after a pretty sedate school holidays. I have to say that Daddy and I were really expecting a huge regression over his summer holidays. Six weeks without his amazing school and without his therapies is brutal for Bubbly, and throw in all of the upheaval with our home life, and no one was expecting it to be pretty. But Bubbly handled it like a champ, with very little of the destructive sensory seeking I wrote about here, nor the utter chaos we saw on this day (seriously, I still can't believe that one!). We had maybe one really bad day each week, but when it was over he'd be busy and hyper, but happy for the most part. He improved with his toileting, even starting to indicate that he needed to go, or that he already had, and his receptive language really picked up instead of declining as it usually does without his usual routines in place. We more than survived, with a lot of time outside playing with the sprinkler, and some play dates with like-minded families!

But his eating became a big concern. Bubbly became even more selective about what he would eat, and gradually phased out the things that we'd depended on him eating, like fruit, toast and sustagen (a dietary supplement milk drink). The quantities of what he was eating were still fairly okay though, and where we could, we gave him time off his Ritalin to try to make up some calories. This seemed to be working. He was hyper as all hell on those days, but he ate heaps and his weight was stable. But over the last few weeks the quantities that he was eating had diminished. He was full of energy and happy, but he seemed to be surviving on not much more than the supplements I was getting into him, cookies, banana bread and hot chips. He was visibly losing weight and we were terrified, so back to the paediatrician we went last week.

I wrote a blog post about Bubbly's first two weeks on Ritalin back in November, and where I left off we still weren't sure that it was the right medication for him, but things were looking up. At three weeks though, he stopped eating and his anxiety had soared on the full dose. The paediatrician took him off it, and then started him again on the tiniest dose (5mg in the morning), and that seemed to do the trick. He was calmer, concentrating beautifully and was eating and sleeping okay because it had worn off by the afternoon, when he would be hyper, but not as much as when he'd been building up all day. But the paediatrician warned us that the tiny dose wouldn't stay effective for long, and he was right. The problem then was that Bubbly wouldn't eat after a lunch time dose, his sleep was disrupted, even with clonidine, and his anxiety returned.

So between that and his scary weight loss we all knew that it wasn't the right med for our boy, and our next option was a new ADHD med called Vyvanse, which is a slow release stimulant that everyone is hoping will have the right effect on his hyperactivity and impulsiveness, but without the sudden kick of Ritalin which has affected his appetite so badly. Time will tell, and as it is only available through one interstate pharmacy on a monitoring program we had to enrol in we're still waiting after a week for it to arrive- and Bubbly is his au natural hyper, happy and very LOUD self until then!

So that's Bubbly. Now for The Little One. I've started many a post about how closely I watch my Little One, and never finished them, because I didn't want anything to seem like a foregone conclusion. There was a reason for the five year age gap between our boys, and it was because we weren't ready to have another child while we were getting our heads around The Bubbly One's considerably high needs. I'm not going to lie, we were also aware of the increased odds of another child being on the spectrum also. So when we did decide to have another baby, it wasn't until we were prepared to be okay with possibly having another autistic child in our family.

From day one, The Little One has been totally different from his brother. Calm, easy-going, sociable and settled, we called him "The Angel Baby" from the early days because he was such an easy baby. We had none of the feeding or settling issues we'd battled first time around, he'd go to anyone, and he seemed thoroughly amused by the chaos of our home. It was as though he was born knowing that more would be expected of him than of other babies, and we thought we were home free. The Little One is still most of these things. He still delights everyone who meets him with his easy-going ways and his cheeky giggle.

But I have concerns.

He has been in physiotherapy since nine months for low muscle tone, poor core strength and gross motor delays. He didn't sit independently until 13 months, and at fifteen months, he is just starting to take tentative steps while holding on to something. He is ridiculously oral defensive. He still doesn't feed himself, melts down when I brush his teeth, and he doesn't mouth things to explore like other babies. He loves fans, and wheels and buttons. He is social, he seeks out other kids, but his eye contact is very inconsistent. He babbles, and he responds to some basic instructions, but there are clearly language delays. He doesn't point. He has a large head circumference.

Small things perhaps, but lots of them all together. A paranoid mother? Or one who has walked this road before and knows the cracks in the pavement all too well? His paediatrician thinks the latter. We will start screening at eighteen months with my Little One, and from there, time will tell.