Changed.

The Bubbly One entered this world after a fairly routine pregnancy followed by a slightly complicated delivery. I was healthy and fit. I worked up until seven and a half months (though increasingly behind a desk with no shoes on and my swollen feet up). I had some blood pressure issues later on but nothing dangerous. During the delivery his heart rate dropped and he lost some oxygen, though he never actually stopped breathing. This happened while I was pushing and we were past the point of no return to go for a caesarean so the OB got him out as quickly as she could, he was suctioned, spent half a day in a humidicrib and the next five days in special care because he had a poor sucking reflex. Other than the poor suck, which was also attributed to his having a very tiny jaw there was nothing clinically there to indicate that he was anything other than a healthy baby who'd had a bit of a rocky entry into the world.

Knowing what I know now, I can see autistic traits in The Bubbly One from birth, particularly with regards to sensory issues. We had a baby boy who wanted to be wrapped so tight I wondered that I was constricting his circulation sometimes. We joked that we were restraining him as we cuddled him so, so tight to settle him as he writhed and fought against our hold- until we applied just the right amount of pressure and he would finally relax and cuddle into us. He wouldn't sleep in his cot, but would lay happily in his pram which seemed so tight and uncomfortable to us. We moved house when he was three months old and when I returned with him to our old house to clean he screamed as he looked around to see everything different. At six months there were more days than not where the only way to settle him was to put him in the baby swing or to take him for a drive. In both cases the movement calmed him and he would drift off to sleep as I cried and wondered what I was doing wrong. At our antenatal class reunion he was the only baby who seemed to be in pain around the other babies. I left embarrassed and disappointed, and joined a mothers group to teach him to socialise and to give me some friends who maybe understood how I was feeling- surely mine couldn't be the only baby like this? He improved there, or maybe it was I that improved. I convinced myself that it was just a personality thing. He grew faster than all of them, but he trailed behind them in development. I watched the other babies become interested in each other and he seemed to be in his own little world.

He made sounds, so I thought he was okay. Looking back I see now that the sounds he made carried no interaction with us. There wasn't the intent to communicate something with us- something that I've only really realised since his little brother came along. I don't recall him responding to his name, more to our voices. He couldn't stand to be with anyone but us or his grandmother, and family gatherings were torturous as he would scream at anyone who looked at him, especially if it was a male with a loud voice. I would bump into friends at the shops and he would cry as soon as they looked at him. We thought that he just didn't want to stop. We thought that he was in pain- that he was teething, or tired or had wind. We just didn't understand why he was so miserable around other people.

By the time he'd turned two I was worried. A lady who helped at the play group I took him to in my desperate attempts to help him to socialise casually mentioned (more than once but without mentioning the "A-word" other than once in passing) that he reminded her of her daughter. I'd see the other kids his age following instructions and talking and it hurt. He wouldn't sit for story time, he wouldn't even attempt any of the singing and dancing and craft time was a tantrum filled disaster. I was worried but everyone assured me that boys take longer to do these things than girls, that my brother and cousin hadn't talked until later, that maybe he just didn't enjoy the playgroup. I mentioned that I was concerned that he walked on his toes and was told that I was paranoid because I worked with people with autism. Someone actually said to me "it's like you want him to have it". Yep, really.

When he turned two he struggled through his birthday party while the other two year olds played happily with each other and used his toys how they were meant to be played with, and I convinced my husband that it was time to look into speech therapy. He started with a lovely young lady, fresh out of university, totally unprepared for an uncooperative two year old, and I left more and more deflated every week. I understood what she was trying to do by playing with him but he didn't want a bar of it. He threw tantrums throughout most sessions and couldn't stay on task. He was assessed as having a severe receptive language delay and moderate expressive language delay and I was devastated. I hadn't realised how much he should be understanding. The speechie referred us to an early childhood screening service, who said there were certainly delays across the board. I hadn't realised that he moved awkwardly other than the toe walking. I thought that he just didn't perform for strangers, not realising that he should be able to. The report strongly recommended that we seek a developmental assessment with a view to gaining early intervention services.

You would think that with all of my concerns I would have run with this information. No. I got angry. How dare they write him off at just twenty seven months. Denial hit in a big way. I saw my dearest friend look at me with pity as I struggled to manage a total meltdown when we took our kids to see a show together. I still remember seeing the words in her eyes that she didn't say because she didn't want to hurt me when I said that we would give him a bit longer to catch up at his own pace. I wasted, yes wasted nearly six months when we could have been getting early intervention. I still cannot remember what prompted my husband to comment that something was wrong and I mentioned the report that he, in his own denial hadn't read. We were at a park watching him run around awkwardly and I commented that maybe he had a form of cerebral palsy as well as a speech delay and that I would make an appointment with the doctor. Perhaps he just needed some physiotherapy as well as speech. The word autism screamed in the back of my mind and I silenced it brutally, but I still took him to our doctor and told her that I thought there was something more than speech and that I was worried about his cognitive development. She actually said to me "You know that if he is diagnosed with (pause) autism, that there is a lot they can do for him while he is young". She referred him to a developmental paediatrician who she said would listen to me.

I spent the next two months before the appointment with the paediatrician psyching myself up. I set about preparing my husband and family for the word that would change things forever- all the while trying to ignore thinking about what it would mean for me. It wasn't until the day before the appointment as I cried on my good friend and manager at work's shoulder that I admitted that I was scared. I knew what autism was. I already loved people with autism, but I had seen the effect that raising a child with autism to adulthood had on families. I wasn't scared for him- I was scared for us. I can't even remember what she said but whatever it was, it helped and I was calm going into the appointment.

I spoke for five minutes with the paediatrician (who did listen) while he observed our son, and he said "I think you are right. He is on the spectrum, though on the mild end". He gave us our paperwork to access our funding, his receptionist took us through the steps that we needed to take to register with the autism advisory service and we went on our way.

I sat in silence in the car for a while until my husband asked if I was okay. "Yeah, it just sucks to be right" I replied. My parents rang and I said the same to them. My dad said exactly the right thing "It doesn't change a thing, he's still the same boy that we know and love and we're here for him and for you". I still cry remembering those words two and a half years down the track. And when I hung up the phone that's what I did. I just cried for my boy, and I cried for us. I cried for the road ahead and for the life that I thought that we would have. We drove for hours, because that was what we did, and still do when we need to deal with something hard. We stopped to let our newly diagnosed son stretch his legs and we both hugged him. And I cried some more. He laughed at my tears. He touched them, and he gave me a hug and a kiss, comforting me- as he still does today.

We struggled on, though by this stage we had an amazing speechie who I'd found via word of mouth. She did not specialise in autism but she was easy going, creative and "out there" and my boy LOVED her. He couldn't sit still so she worked movement, dance, singing and what I now know as sensory breaks into his session. When I butted heads with his preschool director who steadfastly refused to meet his needs because any difference in service to the other children wasn't "inclusive" she assured me that I wasn't being a "difficult parent". She used her contacts to link us up with an amazing OT, who opened my eyes in just one session to how my son's sensory world was affecting him, and for the first time I saw my son laugh and engage and talk with a stranger the first time that he met them.

We moved on from The "Inclusive Preschool" after a few more turbulent months. We just played for four months. We went to therapies. I learned everything I could about sensory processing disorder and how it related to my son and autism, and I left my job to be a stay at home mum. We began early intervention with a vengeance and in a supportive preschool environment my son thrived and was happy. We didn't see a miraculous acquisition of language, independence or social skills, though he did progress he continued to fall further and further behind his peers. A "severe global developmental delay" was added to his diagnosis and the paediatrician used the phrase "more autistic" when he saw The Bubbly One for review. We were told that a special school was the only suitable option for his education and had everything we were doing for our son critiqued as being inadequate when he was assessed for school placement. But things were looking up.

We found other parents on the same path as us, who shared in our triumphs and who were there in the dark times, not always with wisdom, but with comfort and complete understanding. New friends who we probably would never have known but for our children's shared neurology.

We found a school that's more than "special", where our son is valued and supported and has developed a love for learning.  Where he has friends, and is already surpassing everyone's expectations of him. We've found professionals, who care about our boy and take such delight in seeing him progress, professionals who have become friends and who give so much of themselves to our son.

We brought another baby boy into our family, and we have watched the most beautiful loving relationship develop between our little boys despite so many obstacles, which you can read more about in this letter I wrote.

We've grieved for the life that we'd planned- for us and for our son, and new layers of grief will be exposed from time to time. We've had moments of frustration, of anger, of helplessness and despair. But those dark times exist in such contrast to the overwhelming joy our son brings to us. The excitement and fascination as we see him beginning to speak, wanting to let us into his world, and to join us in ours. The hope as he learns faster than anyone expected or planned for. The awe when see people visibly moved when he touches them with affection, and when his laughter spreads to all of those around him. He has a power and an influence over people which is effortless and a part of who he is. We watch him teach our families, as he has taught us, a new depth of love that we've never known, and I have watched him change people's attitudes and responses to autism in a way that no level of advocacy and "educating" by me could ever do.

My dad said "Nothing's changed", but he was wrong. We have all changed. That word, spoken on one beautiful autumn day: Autism. A diagnosis? A way of life? A disability? A gift? Whatever it is today, tomorrow, twenty years in our future, it isn't what has changed us. What has changed us- all of us, is the beautiful boy that we all love so much.

Inside the Bubble

Welcome! If you're reading this then you've possibly stumbled across my blog whilst killing time getting your your kid to sleep, or because I've shamelessly plugged the blog on Facebook! I suppose I should begin by introducing us. Boring I know, but necessary as a starter really!

The centre of the bubble is Master Bubble himself (also known as "The Bubbly One"). Five years old, disagnosed with autism at 3 years and a severe global developmental delay also at four. The Bubbly One is entirely too cute for his own good, which serves him well as he is a bundle of non-stop mischief who moves from sun up (if we're lucky) until the Clonidine kicks in at night. He is mostly non-verbal, sensory seeking, musical, messy and did I mention cute? He's also an affectionate and happy little boy who lives with a joy that is contagious. I know this beautiful little boy better than anyone else on this earth but have so much yet to discover about him.

Added to the bubble in late 2012 is The Little One. The Little One arrived in this world seemingly knowing that more would be asked of him than of other little brothers. He is happy and easygoing, enamoured with his big brother, and seems thoroughly amused by the chaos he's been born into! It's something of a shock after living in the autism bubble for so long to hear him babble to us and see him respond to his name. In the same way that I watch the Bubbly One, so fascinated and desperate to get inside his head, I watch the Little One, amazed to see him wanting to let us in at just six months.

Then there's my best friend and husband, whom we shall call Daddy for the purposes of this blog. Patient, hardworking and always putting himself at the back of the queue, I was truly blessed the day this gentleman asked me to be his wife and our boys could not have a more selfless and loving father. Daddy is a very private person so I won't be posting about him directly but be assured that he is always in the thick of the action (usually diffusing the situation and making me laugh at the absurdity of what we deal with sometimes!).

Then there's me- Mum, Mummy, Mumma. Thirty two years old, university educated stay at home autism mum. My journey is really just beginning and I feel like an old soul already. I've always worked in the disability world, but after struggling for the first year after Master Bubble's diagnosis I found that as much as I loved my guys at work I just had nothing left for my son at the end of each day. I miss those days though and so often The Bubbly One will do something that reminds me of someone I worked with. Most of the time I'll smile and silently thank that person for preparing me for my most important job, and other times admittedly I jump on him with a "don't you start that!". When I'm not kid wrangling (and often when I am) I am attached to my iPhone. I am something of an autism blog junkie and have a serious addicton to Facebook. I also like to escape with my much neglected friends every now and then and attempt to scrapbook some of our crazy life. I'm a Christian and regularly wrestle with God about why things are the way they are. Sometimes I feel like I get it, other times I have no clue, but the conversation is never boring!

Finally, I guess I should explain the name of my blog. The Autism Bubble is what I call the safety zone we tend to live in these days. Don’t get me wrong, we still get out into the world, but we are getting to the stage where the parties our son is invited to are for other kids with disabilities (mostly autism), his therapists have become friends, we socialise with other autism families. Other autism mums have become my dear friends and my phone and Facebook are full of them. Because his level of disability is assessed as severe he goes to a special school- where he fits right in and is happy.

We still have friends whose lives are untouched by autism (apart from our visits) and I love them dearly, however it feels as though we live on another planet when I hear them talk about their kids. I am sure that, all things being okay with The Little One, that I may have to learn to function in the real world soon enough, but for now, life in our autism bubble is what I know. Sometimes I try desperately to burst from the bubble, and for everybody’s sanity it is important- but I have become comfortable in the bubble too. Maybe it’s about accepting where my son is at. Maybe because it’s a place where I am a little sheltered from the fact that he is years behind his peers no matter how well he’s progressing. In the bubble I don’t have to fight so hard to celebrate my beautiful son and to prove his value to the world. In the bubble he is happy- and so am I.

So welcome to The Autism Bubble! Now that the formalities are out of the way I look forward to celebrating our beautiful son and sharing our journey with you.