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. 

"Hah"

"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.