Sunday, 6 April 2014

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?"
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.

Saturday, 5 April 2014


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