Wednesday, 31 December 2014

ABC's of 2014- Part One

It's New Years Eve 2014. We party hard around here. I am in my pyjamas at 9:20pm, the boys are in bed and almost asleep, and I have a DVD on and a glass of wine and thought I'd reflect a little on the year gone by.

It's been one of the most challenging years of my life personally- my first as a single parent. I don't share much here about this, and I still won't, suffice to say there have been some real lows, many moments of doubt, and a lot of soul searching. I like to think that most of the time I've handled myself with grace and with dignity, and I'm quite proud that the boys' dad and I have managed to stay friends and co-parent in a way that puts our boys first. My faith has been strengthened greatly in the last twelve months as I've had no choice but to lean on my God with everything, and He has carried me through every low and brought me every high. Those highs have generally revolved around my children, who truly are the greatest blessing in my life.

I really didn't want to write a long, deep and meaningful post about our year. I think we're all a bit "overloaded" at this end of the year, so I'm going to try and put some of our year into a list- only using the alphabet in honour of my Bubbly One, because YouTube Alphabet Phonics have been the soundtrack for a lot of this year. You can find links to other posts I've written via the highlighted and underlined words throughout the post.

So without further ado, The Autism Bubble ABC's of 2014:

A is for anxiety
I have it, I finally acknowledged it, and I'm learning to manage it. I'm very thankful to the excellent psychologist who looked right through my "fine" exterior and helped me to understand that it wasn't "just stress" and was in fact, really unhealthy.

B is for Bus Driver
My pre-coffee sparring partner. He critiqued my overgrown lawn, my hairstyle and my pyjamas. I told him he had no filter and explained that it's "the thing that catches all the inappropriate crap you think before it comes out of your mouth". He took that well and behaved for a few days, and he really tried to take on board (see what I did there?) the things I explained about Bubbly's sensory issues and about how my boy experiences the world. He drove me mad, but he also drove Bubbly safely and reliably to and from school, and saved me a lot of time so I could devote more of it to the Little One. "Hail to the bus driver" indeed!

C is for communication
So much came together for Bubbly with his communication this year. He is still mostly non-verbal, but his receptive language has come so far this year. With a combination of maturity, incredible teaching, and a very well suited ADHD medication (Strattera) has come a huge increase in his ability to concentrate. He is taking in the things he needs to learn, and his anxiety has also eased because he's not so overwhelmed by his brain and body wanting to do a million things at once. In turn, because he has more control over what's going in, he's suddenly coming out with all of this awesome stuff, and his school have done an amazing job of providing the AAC supports and teaching that he needs at every moment. Visuals no longer make him run away or melt down with anxiety, he can navigate through TouchChat better than I can, he's responding to and using some signs, and we're also hearing lots of part-words- sometimes spontaneous, sometimes with prompting, but always in context. He has come so far this year that he received the Communication Award for his entire school for 2014. Bubbly's dad and I were fit to burst we were so proud of him, and so were his teaching staff.

D is for Diagnosis
At the beginning of the year I raised some concerns I had with The Little One's paediatrician. He wasn't pointing, he had no purposeful language, he didn't respond to his name, he was greatly distressed by certain textures, he wouldn't tolerate anything in his mouth except for a bottle and feeding him solids was a battle. He was fascinated by the fans or wheels spinning. He was behind with his gross motor development, he had low muscle tone. It was all too familiar even though there were differences to Bubbly. He was 13 months old and the paediatrician said that while he agreed with me that there were developmental delays and emerging autistic traits it was too early for a diagnosis and to bring him back at 18 months. We began early intervention through Bubbly's old provider at 16 months and they agreed with me. A couple more visits and finally, at 20 months The Little One turned in a fine performance of what I'd been describing, and we walked out with a diagnosis. Two from two, and that's okay..  

E is for Early Intervention
There are a lot of things I've said I would do differently if I had my time over with Bubbly, and I'm kind of getting the opportunity with The Little One. Someone said to me when Bubbly was in Early Intervention, that the services he was receiving should be teaching me just as much as they were teaching him, and that's been really clear to me again as I travel these early days with my Little One. It's still  hard, but I'm in a very different head space to where I was with Bubbly at this age. We've returned "home' to the early intervention service at Bubbly's old preschool where we attend a special needs playgroup run by two amazing women, and I see my Little One progress every week under their guidance and support of both of us. I can't do these women justice, but I tried a little in this post about doing this the second time around.

F is for ...
that word I've said way too many times this year, usually under my breath, and preceded by the words "What the...". I need a swear jar, except that would require money I don't have!

G Is for Gratitude
For Bubbly's teachers, his aide, his amazing school, his respite worker and his OT. 
For The Little One's Early Intervention Coordinator, his aide, his physiotherapist, and another shout out to the most talented OT on the planet. These amazing women give of themselves week in and week out, they champion my kids and they support me more than they will ever understand. I wrote about a few of them, and some from days gone by in my Champions post.

H is for Haircut!!
Bubbly grew a LOT this year, and my ability to hold him still for the torture that was a haircut was pretty much gone. In desperation I asked in a group I'm in if anyone had a YouTube video of a scissors-only home haircut. My awesome friend at Suburban Mamma and her gorgeous children MADE us one! He watched it without running away. There were a few other factors I clued in with over the following couple of days- one of which was that if I called it a "chop" he didn't think it would hurt like a cut, and to make a long story short (you can read it here), Bubbly ended up giving me the scissors and allowing me to give him his first ever tear and trauma free haircut. There have been a couple more since then. It was nothing short of miraculous, and gives me hope for the day when I have to shave him when he's older!

I is for iPad
I love what it has brought to Bubbly's life, for the opportunities it's presented for his learning and communication, and I curse it's pathetic battery life (and that ridiculously short charging cable) on a daily basis. It goes everywhere with Bubbly. I fume, get offended and feel guilty every time I read another article talking about how electronics overuse is detrimental to our kids', and then I think about the things it makes possible for my child that others take for granted- the ability to communicate, to interact, to learn, and even to feel safe and secure, and I look at my kid that never stops moving, and I get over it. Like most things, the usual rules just don't fit in our house. 

J is for Jesus
I love Him, Bubbly loves Him, and for the first time in six years my boy has chosen to come to church and has not only tolerated, but enjoyed KidsChurch with my support. This kid plays Christian music on his iPad and worships loud and proud, and I envy his absolute lack of care of what others think of that. Props to his respite worker, OT and bus staff for just respecting that about him too. 

My church is an amazing support for me, and with Bubbly coming along, and The Little One being in creche, a whole new level of autism awareness has been raised in my church also. Bubbly is the most high support of any of the kids with special needs we've had through our church, and as of next year there will be a Special Needs kids ministry beginning, including supports in KidsChurch, a special needs-specific class for those who struggle to cope with the existing groups, and measures across the entire church to make it more accessible and supportive of special needs families. I am also very excited to be starting a social/support group for special needs mums and carers, something that has been on my heart for a few years now, and for which the support and enthusiasm from the church leadership has been amazing. It seems that Social Work degree may get some use after all!

K is for Kisses
Bubbly's weapon of choice. Don't want to do something? Give the person a big sloppy kiss. It'll distract them surely! Want Mum to get out of your room and leave you alone? Give her a smooch and then shut the door in her face. Want something you're not sure they'll give you? cradle their face with your hands, give them some super special eye contact, a peck on the lips, and it will be your's. It's seriously cute or it wouldn't work so well!
L is for learning
Them, me, it never ends, and if we're doing this right, it never will. 

For Part Two, click on this link:

Friday, 19 December 2014

A Whole New World

There is not a parent alive who doesn't imagine what their life with their children will look like. We all have hopes and dreams for our children, and things we look forward to doing with them. When we're pregnant we say things like "As long as the baby is healthy...". For most of us, unless something has shown up in our prenatal testing, the thought of  life with a child with a disability doesn't really enter our thoughts. We dream of the things we'll do with our child, what we'll teach them, and of what we'll learn as they grow. We think of the memories we have of our own childhood, and if it was a good one we think of the moments we will recreate with our own children. 

When Bubbly was a baby his dad and I talked about the day when we would dress him in his first soccer kit. His dad would coach the side of course, and we'd spend our weekends watching him play with his friends. As he grew and it became apparent that we weren't raising a child who was particularly interested in soccer we readjusted our expectations, and we learned to love what he loved. 

Being the one that stayed home and did the therapy runs, I think it was easier for me to come to grips with our autism life, and I looked forward to Bubbly's OT sessions and early intervention group as much as he did. I really believe that every bit of hard-won progress Bubbly has made, made us prouder than a million soccer goals ever would have. I'm not going to lie though, I know that to this day, a part of my son's father aches deep down when he drives past a soccer field as he takes Bubbly to his social group on Saturday mornings. I'll be honest, when I learned we were expecting a boy when I was pregnant with The Little One, one of my first thoughts was that my husband might get to be that soccer dad he'd always wanted to be. It's still early days with The Little One, but it's not looking like soccer is going to be his thing either. Like we did with Bubbly though, we'll find what he loves, and we'll run with it, we'll share it with him, and we'll be proud of him. 

I wasn't so into the whole "soccer mum" idea though. Sure, I'd have stood on the sidelines with the other freezing parents, and I'd have cheered or commiserated each week. But that wasn't what I envisaged when I was pregnant with my boys. My dream was a little simpler. You see, while sport was something the boys' dad shared with his much-loved father, I spent a lot of time reading with my mum. I have terrible eyesight, and as a kid I had exercises I was supposed to do to help me to focus. I struggled with them but loved to read, so the ophthalmologist told my mum to just run with it since I was using the same muscles to read as I did with the exercises. So I have a lot of memories of reading with my mum before bed, while she cooked dinner each evening and on weekends outside. I remember my childhood holidays by what I was reading at the time, and I have a huge collection of special books from my childhood that I kept to share with my own children one day. 

We are encouraged to read to our children from birth. It is fantastic for language development, it's a bonding time, it's part of a perfect bedtime routine, it develops a child's imagination, it teaches them to view life from another's perspective, I know all of this, I believe all of this. I also heard and read a lot of this: 
Your child isn't talking yet? Read to them!

Your child rips their books? Teach your child to love and care for books by starting from birth. 

Your child isn't sleeping at night? Make sure they have a soothing bedtime routine, with a story to help them to settle for sleep. 

Reading opens a whole new world for your child. Together you can travel the world, and to worlds beyond ours. 

I knew all of that, I was told those things over and over again when my child wasn't developing like the other babies around him, and it stung. I read to my children from the day they were born. It seemed only natural that my babies would inherit my love of reading. I wanted so badly to travel those imaginary worlds with my children. I have bought so many books in the past seven years, in the hopes that just one of them would inspire or at least interest my sons, and it was so hard when the only interest Bubbly showed was in ripping the pages and stripping the binding from them, and it made me so sad when he'd struggle and cry when I tried to read with him. Those special books were put away out of sight, where they couldn't be damaged, and where I didn't have to look at them and be reminded of something I wanted so badly.       

Looking back, there had been some small breakthroughs this year. Bubbly had started to follow and enjoy some interactive eBooks on his iPad, and I started to think that maybe we could start to think about some audio books. It didn't really give me the chance to share reading with my son the way that I'd always hoped, but if he enjoyed the stories, then that was progress and we could listen together in the car or something. 

Then we saw some more progress. Bubbly's school did a unit on traditional fairy tales and stories throughout the year, and they did some amazing work to bring those stories to life with him. Not being someone who is a natural teacher, I found it fascinating how many ways they found to do this. They dressed up as the characters (and also challenged his sensory issues), they tailored games to the stories (building his social and communication skills!), they did artworks around the stories, and they encouraged the kids to use their imaginations to write their own stories using visuals. Bubbly's version of Cinderella saw a boy losing his jumper in the school! They played "Pig, Pig, Wolf" instead of "Duck, Duck, Goose", using an AAC device to say the words as they played, and they used one step buttons reading common lines in the stories ("Little pig, little pig, let me in!") in order to act it out together. They even worked at taking the character's perspective in the stories by using a visual to describe how the characters were feeling at different parts of the story. I am amazed at just how many ways these stories were brought to life for Bubbly. I was even more amazed to see video of him choosing to listen to a story over something else that would have been a more preferable task at school. 

So when he came home with a new book from school for Christmas I had hope. I was rather enthusiastic when we opened the present and asked Bubbly if he'd like to read the story. He picked it up and threw it in his room with a resounding "No!". I resolved to try again another time, and added it to the pile that I harass The Little One with (he's not much keener than Bubbly was at that age, though less destructive!). Then today The Little One was asleep and I was surreptitiously checking Facebook on my iPad in my bedroom. Bubbly and I have an ongoing battle over my iPad, especially since it's now school holidays. He thinks he needs both iPads playing The Wiggles on YouTube at once. Funnily enough, I think that one iPad going at a time is quite sufficient. So when he came to find the iPad I quickly hid it and continued to innocently read the worn copy of "Harry Potter and the Order of the Phoenix" I was re-reading for the millionth time (I re-read the series at least once a year, I love them). Not fooled he began looking behind me, under the pillows, in my drawer for the iPad. 

"It's not here. I'm reading Harry Potter" (Bubbly doesn't know who Harry Potter is to the best of my knowledge).

"Hah" (Harry) 

He wasn't fooled and frisked me for the iPad, so I patted the bed beside me and started to read Order of the Phoenix aloud (honestly hoping he'd get annoyed and leave me in peace for a few minutes!).

He didn't. He bounced onto the bed, and when I'd read about a page he was still there, though rolling on the bed. He looked at me when I stopped reading, then at the book. 

"Really? You want me to keep going?" I showed him the book. "There's no pictures and it's very long. How about we try and read your new book from school first?"

He tolerated the new book (just barely), and then tapped my book again.
"You want more Harry Potter?"
"Moh" (and he signed "more") "Hah"
"Okay, then. How about we start with the very first book then?"

He waited patiently while I downloaded it onto my Kindle, and then cuddled up on the bed beside me, intermittently rolling and bouncing on the mattress. Admittedly I skipped over some of the longer, more descriptive passages, and I changed a few words that I knew he wouldn't recognise, but we got through nearly two chapters in one go. Each time he seemed restless or not listening I'd pause and ask if he'd had enough reading, and he'd sign "more", and say "Moh" or "Hah", often trying to repeat the last word I'd read.    

I'm still a little stunned at how it just happened after all this time, and to be honest, I cried when he bounced out of the room. Bubbly's doing amazingly of late, but I've been tired and struggling. The Little One has entered a really difficult patch, I've been unwell, and I was really feeling guilty for how much time I knew Bubbly would probably be left with his iPad over the next six weeks of summer holidays as I tended to his brother's needs. Today may well have been a one-off, but if it wasn't, then we have found something special to do together when his little brother has his sleep each day; and if it was? I still have a beautiful memory of a time spent travelling to another world with my son. May we travel to many more together.