Be A Friend

April is nearly upon us again. I can already hear the groans from the autism community, and bloggers opening their laptops in preparation. We have a whole month ahead when the world looks our way. Or do they? There are actually some pretty important causes with special days, weeks, or the entire month of April devoted to raising awareness and fundraising. So that got me thinking: if I lived a life without autistic children, where I hadn't worked with disabled adults for the bulk of my professional life, then what would make me want to throw my support (and my money) behind Autism this April? Why would I focus on Autism over Parkinsons Disease (11th), premature babies (15th) or Hemophilia (17th)? All of them have a "world awareness day" in April. Why would I focus on Autism for a whole month when I could also be devoting myself to IBS, Child Abuse Prevention, or Sexual Assault Awareness and Prevention, all of which are worthy causes affecting millions of people globally, and which claim April as their "month"?

So I took a little look at what those days or months mean to those communities. The common denominator in each of those causes? Agreement. A united front. Communities that care for themselves. Perhaps to an insider this mightn't be so true, I don't know, but as far as their world awareness days and months go they stand together. The Autism community? Not so much.

We can't agree on whether it's awareness we want and need, or if we've been there, done that and we need to demand acceptance. We disagree on who is worthy to receive any fundraising dollars. We disagree on who should have the right to a voice, to an opinion, or even the right to feel the emotions we all feel at any given time. We disagree about whether autism is even something that does affect us, whether it's a part of us, or both. We can't even agree on a stupid publicity stunt to get the world's attention as the ALS Ice Bucket Challenge did so successfully last year.

I've seen pies in the eyes, Twizzler challenges ("What the hell are Twizzlers?" asks everyone outside of the USA- It's plastic pretend liquorice basically). I've seen suggestions designed to mimic sensory overload, of using AAC for 24 hours instead of speech, suggestions of lining things up and sharing photos on social media. I've seen sarcastic "Drinking for Autism" suggestions (it's also Alcohol Awareness Month incidentally so probably inappropriate!), and I've seen "Spend time with my child so I can take a break or have a nap" posts. I've seen posts about respecting and celebrating neurodiversity, and I've seen posts demanding our society change for a neurology they don't understand, and will never want to understand as long as this community remains so aggressively divided.

The reality is that even the most tongue-in-cheek suggestions arise from the needs and feelings of a part of our community. The fact is that no one is actually wrong here. The world does need to be more aware of autism as an entire spectrum, and autistics need acceptance regardless of where on that spectrum they happen to be right now, tomorrow or forty years in the future. Parents and carers need support, services and understanding just as much as their children (young or adult) do. Neurodiversity really does need to be celebrated. My kids need to be celebrated as the amazing individuals they are, just as much as they need awareness, acceptance, respect, and appropriate services and education. As a parent I need to know that the world values my children, and also that I can find the support that I need to be the best parent that I can be for my kids. The reality of a spectrum so wide and diverse is that there is also a spectrum of needs, and none is less relevant than any other. Perhaps though, we need to be looking to those who can best meet our needs and offering our own helping hand to those whose needs we do understand and relate to.

There is another International Day in April that caught my eye. "Pay It Forward Day" is on the 30th April. I don't know how long the has been around, but the movie premiered in 2000, and I think we're all aware of the concept. Someone does an act of kindness and you pay it forward by performing an act of kindness for someone else. It sounds simple doesn't it? It doesn't depend on someone being deserving enough, or "severe" enough, or on how much that person does for anyone else. It doesn't matter whose voice is the loudest, or who writes the most angry blogs. It's just about showing kindness for the sake of showing kindness and making someone's day, and possibly their life that little bit better.

A few weeks ago I was in my local shopping centre doing my groceries. It was Friday night, I wasn't feeling well, and I was feeling incredibly anxious about my house going on the market and the string of upheaval we had ahead. We needed food though so I dragged myself in there. In my foggy brain I realised on the way out that I'd forgotten to buy a bottle of coke which I needed to make a sensory bottle for Bubbly for KidsChurch so I went to the nearest vending machine, went to put in my money, and I saw this:

A small gesture, with some kind words from a total stranger, and you know what? It made my day. I still have the little note in my purse to remind me of that act of kindness in a moment where I really needed it.

So here's my suggestion, autism community. Stop thinking about what will make headlines and raise awareness and money. Look at the autistics around you. Look at the families around you. We have some amazing people in our autism community- autistics without children, autistic parents of autistics, and NT parents of autistics. All different people with different viewpoints and experiences, and they are incredible people who make a huge difference in the world around them- both locally and globally. Want to know the common denominator? They let their actions do the talking, not just their words. 

They're the first to offer their number to someone in need. They don't judge the person struggling- they ask "How can I help?".

They chat online to a stressed out parent who hasn't slept for days and inject a bit of humour, and often a cyber hug into a tough night.

They share their experiences in a world that never understood them, without projecting their hurt onto others. They choose to love and be a friend, instead of hating and tearing down.

They see the mother fighting tears at playgroup with their newly diagnosed and overloaded toddler and they make calm and quiet steps to form a friendship.

They open their homes and their hearts to other families and they celebrate each other's kids as much as their own.

They support the newly single mother (or father) who gives everything she's got for her children while she feels like her world is crumbling.

They make a video to help a scared little boy see that it's okay to have your hair cut.

They share a beer with a dad who just doesn't know where to turn for help.

They try again and again to understand each other because they value friendship over ideology.

Wordy blog posts, snarky memes and screamed tweets never changed anyone's life for the better. Accusatory or defensive comments on a FB thread never changed anyone's opinion, or made life better for anyone in our community. But those acts of kindness I've listed above? Many of them were gifted to me, and they have made more difference to my life than anything I have ever read or heard, because friendship will always mean more than words.

Want to help build up our community? Be a friend. Want to change the world for autistics so that society views them with value and respect? Lead by example and treat others that way regardless of whether you agree with each other or not. Want the world to take notice of Autism for the right reasons? Stop talking at each other, stop arguing, and try getting out of the rut of dissent that so many of us are stuck in. Listen to those around you. Want our community to be the one that is celebrated and inspires people to offer their support in April and beyond? Then do what it takes to stand out for being a community that cares, not as one that is perpetually at each others throats. Make the first move. Reach out, and be a friend.

ABC's of 2014: Part Two

Happy New Year! I'm typing this many hours after the big countdown in my part of the world, and I'm watching my friends in other parts of the world ringing in 2015, many in similar style to how I did last night! If you haven't read Part One of my wrap-up post for 2014, you can find it here, otherwise you can just join us from the letter "M"!

Just like in yesterday's post you can find related posts I've written this year by clicking on the highlighted and underlined words. 

ABC's of 2014: Part Two, here we go!

M is for Music
The Little One can, and does make an instrument out of anything. He picks tunes out on his keyboard, and on Bubbly's guitar, he drums rhythmically on whatever he can find when no instrument presents itself. He's also a groover who dance/flaps to whatever he can hear. If it has a beat, he's moving to it!

Bubbly is also a music lover. For as long as I can remember, singing was the way to reach him. Most of his language has come from singing, and this year we saw his first recognition that a song had made him feel an emotion when he was listening to Kermit sing "Rainbow Connection". I wrote about that milestone in one of my favourite posts: Happy Sad, and was absolutely blown away when it was retweeted to songwriter Paul Williams, who wrote Rainbow Connection. I don't think my feet hit the ground for a few days after this:   

N is for Noise
Synchronised meltdowns? Check. Duelling iPads? Check. Cause and effect toys competing with musical instruments? Check. I feel like I live my life in pursuit of peace and quiet. At any given moment there is at least one iPad blaring and/or a DVD going. In the background is whatever instrument The Little One is using (or creating), and Bubbly YELLING whatever flashcards, songs or communication buttons he's perusing at the time. No need to apologise for all of those noisy Christmas presents family and friends, we just add it to the existing symphony!

O is for Online
It's amazing how a large number of strangers can mean so much to you, and also how much damage a bunch of strangers can do to each other. 2014 was the year of a lot of cyber yelling, and not much listening in some corners of the online autism community. I tried not to buy into any of it, because there were no winners in any of those discussions, but I was often left feeling like my voice as a neurotypical autism parent was unwelcome, and like nothing I did with and for my kids would ever be good enough. I stopped reading those that made me feel like I had nothing valuable to contribute and I've been a lot happier for it. It's sad really, the vitriol that's been poured out online from some in the autism community hasn't changed anyone's opinion. What it's done is drive away those who listened and learned. To those who've managed to write and behave with dignity, and treat everyone with kindness regardless of where they're at, I thank you. I wrote this post back in August when I was processing a lot of this stuff, and it was probably my most well-received post of the year. It wasn't all bad though, but I'll get into the good stuff a little further down!

P is for Puppy
Last year I applied for a therapy dog for Bubbly. He wasn't ready, but The Little One responded beautifully to the dog that came out, and I was missing having a pet so I decided to save up to purchase a dog of the same breed. In my inquiries with a breeder not far from us I learned about their guardian program, and before I knew it, this girl had come to live with us:

Who now looks like this: 

She's a Groodle (like a Labradoodle, but Golden retriever x Poodle instead of Labrador) and will be part of a breeding program until she is four years old (i.e. two litters of puppies). We are her forever family. She is six months old and has been so smart and gentle with the boys from day one (and such beautiful company for me!). If one of them is upset she just sits in front of them and watches over them and they calm down so much quicker with her present. It's been beautiful to watch her forma relationship with Bubbly (who I didn't think would be keen!). He still doesn't like her to touch him much because her fur tickles him, but she seems to understand that and lets him play ball or plays with him on his terms. She also allows The Little One to cuddle up to her, lean all over her, and play (rather roughly) with her fur. We have, effectively, gained a therapy dog without the red tape or the cost, and through the breeding program other families will be able to own one of these very special dogs too. Best decision I made all year! 

Q is for Quiet Time
I really, really love my quiet time when the boys finally go to sleep at night. Except for Revenge and Downton Abbey I haven't watched any TV this year. No news, no sport, no reality TV. Except for those two shows, that time is when there is no noise and I can recharge. I pray, I read, I journal, I write, I Facebook. On weekends I'll watch a DVD, but with the sound down low and with subtitles. You'll never see an awesome surround sound system in my house- it's just too freaking loud! My kids aren't the only ones with sensory issues it seems!

R is for Respite 
So much more than just a break time for me, or a time for Bubbly to do something fun away from us. 
In my Champions post back in April I wrote this about Bubbly's favourite worker:


"...Bubbly's favourite respite worker, who goes above and beyond every time she works with him, 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..." 

Bubbly draws a very clear line between "work"/school and home, so it can take quite a while before his progress at school becomes the "norm" at home. Bubbly's amazing worker has worked at his school and is a Positive Behaviour Support guru, and she has been fantastic at bridging the gap between school and home with Bubbly. Thanks to her efforts I can now take my son out in public without a harness and he stays with me and walks safely. The communication supports that work so well at school are now more acceptable to him elsewhere because he's used them in respite, and most importantly, he just loves her to pieces. Take a bow my friend. We are so thankful for you, and you are truly a part of our family.

S is for Strawberries
With two selective eaters in the family, I have come to loathe mealtimes. Bubbly goes through stages where he hardly eats anything, but his one constant this year has been strawberries. At one stage there he was eating 2 punnets of them per day (a punnet is usually half a pound for you non-metric people) which got pricey at certain times of the year. In my frustration after a desperate hunt for strawberries before Easter I made this:

and suddenly I had a whole bunch of newcomers to my little Autism Bubble Facebook community. We bonded over our kids' diets (or lack thereof), and from there my Murphy's Law, For Autism Parents album took off. They were fun to make, people related and shared, and we grew a little more. I'm really proud of the friendly place my page has become, and I'm so very thankful for the friendships and support it has brought me- and it all started with my kid's strawberry obsession!  

T is for Tantrums
Ahh my Little One. We always said it was like he was born knowing that more would be expected of him than of other siblings. He was such a peaceful baby. It's fortunate that he is such an incredibly cute and cheeky toddler, because he now turns it on with the best of them when he's not happy! Fortunately (or unfortunately perhaps for him), he has a brother who's taught their mother a thing or two about dealing with the monster tantrum, and who has shown that it does get easier. We've started AAC to help with his communication, we recognise his sensory signals as best we can, and thankfully his love of music is a very helpful distraction when he's starting to lose it. 

Bubbly has also surprised me with how he deals with his brother's tantrums. They do have the simultaneous meltdown mastered (give me strength!), but when The Little One is throwing a tantrum Bubbly really seems to understand the difference. He is more tolerant of his brother taking his things than I ever thought he would be, is firm when he needs to be, and other times just laughs in his brother's face- just as a big brother should! Bubbly's also quick with a hug or a kiss when his little brother is upset, sick or hurt, even if he does get pushed away most of the time, and he thinks it is hilarious when I remind him that he used to behave in exactly the same way!  
   

U is for Understanding 
This is for the people who "get it". They understand, respect and value my kids, and they do whatever they need without complaining, and a huge thank you to those who give me the understanding without judgement that I need on a daily basis too.

V is for Volume

N is for noise, Q is for quiet time, and V is for volume? I'm seeing a pattern here. Let's just say that the day I worked out how to fix Bubbly's YouTube volume with Guided Access was one of the greatest days of 2014!

W is for Waiting
2014 was the year of "wait and see". For twelve months I've felt like I've been living in limbo. Not married, not divorced. Not moving, not staying. Wanting to do something with my life, recognising that my life is not, and never will be about me- and this year has been about learning to be okay with all of that. There are plans and changes on the horizon now, and looking back, it was a blessing to not have to change everything during such a fraught time emotionally. While the waiting was agonising at times, it also gave me no choice but to focus on each day as it came. I'm stronger and more peaceful for it, I have a good friend in my boys' father, and I've been able to give the boys what they've needed throughout this year to learn and to grow into the amazing little boys they are today.     

X is for X-rays
May was the month from hell. You can read all about it in my Surviving the Month of May post. One morning I was getting changed before Bubbly's bus arrived when I heard The Little One wailing. Since that wasn't unusual (see "T is for Tantrums"), I didn't race down to see what the problem was. Imagine my horror when I found The Little One with a leg stuck under Bubbly's recliner, and my further horror when he couldn't weight-bear. He was mobile again that afternoon, but being the paranoid parent I am we got the x-rays just in case and he was given the all-clear. Then three weeks later my doctor asks if we have his x-rays as he actually has a greenstick fracture that the radiologist missed but which the doctor found. Yep, my baby was walking around on a broken leg and I was none the wiser. Thankfully he healed up and his second x-rays 6 weeks post-injury showed he had healed up. I wore my pyjamas out to Bubbly's bus for the rest of the year, and have slowly gotten over the parental guilt. 

Incidentally, that month also involved our first ever ambulance call for Bubbly who took on a window, and lost (it's in the same blog post). Quote of that month, from the paramedic to Bubbly: "Chicks dig scars mate". :)

Y is for Yankees
This was so much fun! I shared a photo of a packet of Milk Duds on my Facebook page for an American blogger friend who also likes them, and my friend at Effin Autism was a little surprised that Milk Duds were being presented as a representative food from the USA. We got talking about how she'd always wanted to try Vegemite, and she had the brilliant idea of us doing a little "cultural exchange". We later coined this "diabetes in a box" because of the amount of sugar we exchanged. I sent a little visual sequence of how to spread vegemite to your toast, and what do you know, she's now hooked! I'm a fan of Sour Patch Kids now, and I "borrowed" The Little One's Yankees cap, and "forgot" to return it to him.

I said above that it's amazing how a bunch of strangers can come to mean so much to you, and this has been true of so many I've met solely because our children (and sometimes, they) share the same neurology and because the internet is so often our link to the world. These are people I talk to on a daily basis- often in the middle of the night for one of us when our kids aren't sleeping, or insomnia has struck. We celebrate the good stuff, commiserate with the not so good, and we learn from each other. They have been a source of laughter, support, virtual hugs and friendship to me through some of the lonely and hard days that this journey brings, and I can't imagine my life without them. So thank you, friends in my computer, for keeping me sane and smiling. :)

Z is for zzzzzzz
Need I say more? Clonidine is our friend. Insomnia is not. May 2015 bring you rest, peace, and great happiness to you and those you love. Thank you for sharing our year with us. xox

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: http://theautismbubble.blogspot.com.au/2015/01/abcs-of-2014-part-two.html?m=1

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. 

Remember

There is a play group I go to with my Little One every Friday morning. Based in a special place, with special people who have done much for my older son, and our family in the past. Six or seven children with special needs gather there each week with their parents. The children begin by playing with the carefully chosen toys and activities, and an early childhood teacher and an aide work the room, engaging the children as their parents watch closely and learn. They speak with the parents like friends as they ask about their week, picking up on things uttered, and things left unsaid.

My autistic toddler, the youngest in the group by nearly a year, holds a crayon and giggles as he watches the teacher making funny noises to emphasise her scribbles on the page in front of him. Just like that, he grips the crayon, and does his own scribble for the first time, and I smile in excitement and disbelief. The teacher asks about our week, and laughs at the matter of fact way in which I describe my children's rather unusual antics that week. She sees through my joking tone, she sees that my eyes wander away as I speak, she hears my voice catch a little, and she knows that it's been a rough week. She knows that I am tired, and probably feigning enthusiasm this morning for my son's sake, but she doesn't push. She respects that I know what I'm doing, and what I need to do, but also recognises sometimes my children and I just need to coast for a couple of days. We chat about The Little One's eating, sleeping, communication and playing that week. There have been some small breakthroughs I realise as I'm speaking, and the teacher also points out some things in The Little One's play that he's not done there before. There is progress there. Steady progress, despite me feeling like I've not done enough with him in the chaos of our week.

I sit with my Little One for the story and for music time, and not for the first time I think to myself that finally I know what it's like to be at playgroup with a child who wants to be there. I see my small son giggle, flap and spin with other kids who do the same. He plays roughly with the other kids and their parents are okay with it because their kids are doing the same thing. The only girl in the group chooses him to dance with to a song, and their giggles are contagious. He touches the hair of the boy next to him, and is swatted away, but later, when he runs to the door the same little boy wraps an arm around him and guides him back to the group. He has friends. He fits in, and he's happy; so happy.  

Don't look back.

I can't help it. As I sit with My Little One while we sing, and he giggles with the little boy next to him I remember Bubbly at this age, just before his second birthday. I remember, and I feel guilty for not being so content and happy being his mother back then, for not knowing what he needed, or being able to provide it.  

Those early years with my Bubbly One were lost to such loneliness, fear and guilt. If I could go back and hang out with the "me" of those days I would give her a hug, probably make her cry, and tell her that she's doing the best she can, and that her best IS good enough. I would tell her that her gut is right, but that it is not her fault. I would also tell her to cut herself some slack, because that time of denial and grief meant that she was ready to hit the ground running when the paediatrician confirmed what she had known deep down for so long. 

I would tell her that she is not alone. I would tell her that her God is with her through each uncertain day and that she is right to cling to Him. He will show His hand on her life over and over again, no matter how hard things get. She will draw strength from Him and His people.

I would tell her that there is a world with people who understand, and who are living it. That they will embrace her, and she, them and that she will love their kids as they love her anxious, hyperactive little boy. I might even tell her that her child will always be the one lagging behind, that she will watch as his peers go on to mainstream schools, that she will see them speaking, and doing what her son still cannot- and I will also tell her that the time will come where she doesn't care about that anymore. She will see him happy and confident in his own skin, belonging and valued, with friends of his own, and nothing will seem lacking in his life, as different as it is.

I would tell her that every single part of this journey that she is walking is for a reason, and though she may not see it right now, what she's learning in the darkness will help others on the same path.

I would tell her that those years of study were not wasted, that those years in management were preparation for her most important job, and that the training she worked so hard at would give her the strength and the knowledge she would need to advocate for her child and for others one day. I would tell her that her life means something, and that whether she is making money or not, she is doing what is invaluable for her family.

I would tell her that she is worth loving, and that she should be treasured by the one who vowed to do so. 

I would tell her that what she knows as "just stress" is actually anxiety, and that she doesn't have to be bound by that anymore. I would tell her that she is stronger than she knows, and that her hope is not for nothing; that though her child may stay "severe" he will never stop learning, and progressing and making her proud. I would tell her that the day will come when he will make a joke with her, that he will try to trick her, and when he will argue with her- and that she will fail miserably when she tries to be firm with him, because is so damn proud of him for expressing what he wants so confidently. 

I would tell her that a future awaits her which she will feel excited about, and that she will make a difference to many just like her. I would tell her that it's okay to look back, and to remember, because where she has been will help her to understand and support others on the same path without judgement or disdain. Where she has been will help her to understand herself, and her children; and as she remembers she will realise that it's okay to delight in today, and to look forward to tomorrow.

Guest Post by Sarah Jane: If You Read One Thing Today, Let This Be it...

Please note that this is a guest post written by a long-time follower of my blog and Autism Bubble Facebook page. "Sarah Jane" is an Australian mother of two. Her eight year old is autistic and this post is a beautiful letter she drafted to her loved ones to share the news of her second child's diagnosis. I hope you appreciate it as much as I did. -The Autism Bubble   

If you read one thing today, let this be it.... 

This is Christoph*. He is four next weekend. Today I received a phone call, and a few hours later a printed letter that confirmed what has long been known; that Christoph is on the Autism Spectrum. The letter clearly states that Christoph meets the DSM-5 criteria for Autism Spectrum Disorder (ASD). Now, before any of you post anything to say ‘I’m sorry’ or ‘I’m sure he’s not that bad’ or ‘maybe they got it wrong’ or any other well meaning, yet clearly misguided comment,please read on and take in the rest of what I am about to say.

In 2012 Christoph was identified as having a sensory processing disorder and today was diagnosed as ASD ‘severity level Moderate’ (level2). This means it is anticipated that he needs ongoing support of a “substantial” nature. This hasn’t changed since yesterday, and has been the case with Christoph for a long time. The difference, however, is that now he has access to services he was unable to access before. In Australia we are blessed with an early intervention program for ASD and today I signed paperwork to gain him access to this program. This program means Christoph can access evidence based practice services such as Occupational and Speech therapy and Psychological services, up to a set amount, to be used before he turns seven.

I signed another form allowing Early Childhood Australia to be notified about Christoph so that the process can start to see if he can gain access to additional support through school to give him the best chance at receiving an equal education. I was given yet another book on autism (one I haven’t read!)and the lovely support of our local Autism Advisor staff.

On top of Christoph getting a better chance in life because of this diagnosis he will grow up knowing he has autism. He will grow up knowing it’s okay, and he will be taught the skills by myself, family, friends and professionals to accept himself for who he is, yet strive to be even better. He WILL develop a healthy sense of self and identity that includes his autism because it is a part of him. It doesn’t define WHO he is, but it does define PART of what his behaviour or mannerisms are as a result of his neurology and subsequent cognitions.

Christoph will continue to have intensive sensory based interventions at home including the use of our sensory based play area, cloud swing, hammocks and regular runs and walks. He will continue to use visual supports, scripts, and social stories to develop his independence in brushing his teeth, dressing and other daily tasks. He will continue to have (for the most part) my patience as he takes six months to adjust to the idea of new shoes or a change in structure or routine. Christoph will continue to sleep with his companion dog Crystal who has helped him develop his speech and assisted him to learn skills in calming, and self-regulation. He will continue to have ‘thinking time’ when he behaves inappropriately and he will continue to be given the tools he needs during this time to assist him to calm and refocus. He will continue to be taught to think about thinking, about self-awareness and mindfulness. He will continue to be encouraged to try a new food that, on the first occasion makes him gag. He will continue to be rewarded with stickers when he tries something new, regulates his behaviour or any other number or reward worthy acts. He will continue to learn social skills through daily interactions where he is explicitly taught the ‘rules’ that so many others his age can infer. Christoph will continue to grow. He will continue to develop. He will continue to have support to achieve his potential.

The diagnostic pathway is long (Christoph was initially referred at 20 months old) and for over two years he has seen countless professionals and had multiple assessments for different aspects of his behaviour. It is exhausting, but it has been worth it. With the additional support of some brilliant professionals we are thankful to have up here, I am sure methods of teaching and accommodating Christoph can continue to be refined and improved.

I contemplated a facebook post for some time before I wrote this and my reason for deciding to do it is simple. AWARENESS. I am NOT posting this for ‘sympathy’ because, frankly, there is NO need for it. This is a CELEBRATION of acknowledging a part of Christoph, as you would acknowledge part of someone’s heritage or culture.

I want to thank all of those around me, especially my mum,as well as the rest of my family and friends that have supported me on this journey, attended appointments with me, or learnt along the way with me. You all mean the world to me and I truly thank you for what you have contributed for Christoph. 

This post is not designed for any other purpose than to create a bit of awareness and let people know we got there. After years of appointments, we got there. We advocated for Christoph, we repeated countless times his ‘limitations’ and we ached nearly every time. BUT we got there, and now,now Christoph can soar. So please don’t just scroll past because it makes you uncomfortable to think of someone with special needs. Don’t discount the hard work that got us to this point today.

Gain from this a little bit of awareness, understanding, or something. Share the story with a friend, speak about autism with a colleague. Raise a little bit of awareness yourself.Because the more people that know about autism- and foster acceptance, the easier it will be for Christoph to grow up knowing it really is okay. Let us embrace this ‘label’ and normalise it, come out to the world and de-stigmatise autism.For the sake of those with autism both children and adults alike.

Let us accept neurodiversity.

Thank you

XXXXXX

*Names have been changed 

Presume Competence, In Me.

The idea of presuming competence is a good one, and often the first thing parents new to this journey are told, but it is also often misinterpreted. As the parent of a child on the severe end of the spectrum (and that is not simply because he is non-verbal, he has high support needs beyond communication), it can be really frustrating to have "presume competence" said to me as a throwaway line. There is so much more to it than that. Presuming competence in my son is presuming that with the right supports and understanding he is capable of learning and developing to his full potential. That potential is totally different to most children of his age. Anything is possible, but it is a fairly likely that Bubbly will require care for the rest of his life. But his potential is the best that he can be, and the best at what he wants to be. That may not include independent living, and it may not include holding down a job one day. The usual benchmarks for "success" don't apply here, and to be honest, I really don't care about that. I know of many adults who live independently and hold down jobs who I would not consider successful human beings (emphasis intended). What is important to me for my kids, is that they are respected and valued for who they are, not for what they do.

Stereotypes abound in the autism world. As autism parents we are frustrated by them, we can be angered by them, and sometimes, they can even be a source of humour. We love memes ridiculing the whole Rain Man stereotype. We joke about our kids' collective genius at wreaking havoc (usually in very messy form), and we rave together about the ignorant things people say. We all have stories of the assumptions made of our kids based on their diagnosis, and so often they lead to people underestimating them- and underestimating us.

That's right, it's not the stereotypes of our kids that are bugging me today, it's the stereotypes and assumptions made of so many of us as autism parents. There are so many schools of thought about parenting, about autism, about disability; and within the autism community these philosophies and attitudes seem to take on a life of their own. It's safe to say that we, as a community don't do anything by halves, but I think that often, that can cause a lot of hurt, despite the good intentions that most people have.

Which brings this back to me, and the frustration I'm feeling at the moment. Actually no, I've felt like this for a while, but today I actually felt strongly enough about it to dust off my laptop and write something. I've been in a real funk the last couple of weeks. I've had stuff going on (independent of autism and my kids), and when I'm not in a great place, everything seems hard, including doing everything that my kids need. The guilt for letting a lot of things slide for a couple of weeks is brutal, but I took some time out, while The Little One had his nap yesterday, and I opened Facebook. I caught up on a lot of blog posts I had saved, I perused some pages, and when I finished I felt like I'd been put through the wringer and heard that everything I was doing or thinking was wrong, and the worst part was, that it was well-meant pieces of writing which made me feel like this.

I often come up against people making assumptions about me as an autism parent, especially as a stay at home autism parent. I confess that I'm quick to give my resume of 12 years in the disability world, management experience, and my university education (see what I did there!) so that people, especially professionals seeing my children, take me seriously and acknowledge that I know what I'm talking about. At the same time I get frustrated when old colleagues think that I know exactly what I'm doing with my kids because of what's on my resume. My doctor asks me how I'm coping, and I get annoyed that my kids could ever be considered a burden, but when people imply that I have it easy because I don't work and receive government assistance it makes me furious. Yep, I'm a walking contradiction. But while these assumptions are challenging, and upsetting, I find the assumptions that so often come from within our own community downright hurtful, and often less easy to shake off.

Anyone who knows me, knows that I never stop trying to learn how to be the best mother I can be for my kids, and I really listen to those who've walked before my kids. I love the insights that autistic adults give into things that my children can't articulate for me. I read a lot, and I listen. I love to learn, and I like to analyse the good and the not so good as it applies, not only to my kids, but to those I used to work with. I like many of the principles of "gentle" or respectful parenting, but I'm also fascinated by behaviour psychology. I'd never heard of sensory integration until my son began OT, and again, I can't learn enough. There are some truly gifted and compassionate professionals out there who I've learned much from. Likewise, other autism parents have a wealth of knowledge within them which simply cannot be obtained from a book or a website. There are so many voices out there, and most of them have something good to offer if you listen long enough.

I've been in the autism world long enough to know that lots of different approaches have their merits, but that the individual needs to be at the centre of whatever you do, and I believe that if that individual feels safe, valued and empowered as they learn, then you are on the right track. It was very easy to stand by this when I was a professional who went home at the end of each day, but as a parent, you never feel like you are doing enough, and there is always someone (usually with great intentions) who will confirm that feeling for you, and I'm really tired of that. I'm tired of seeing great, loving parents, who never stop looking for ways they can do better for their kids being beaten down, and feeling like they can never be who, or what their children need.

I like to think that I am teachable, that I am open to different approaches to raising my kids that will instill them with confidence, and which will make them feel valued for the individuals they are. But so much of what I read lately, while emphasising the value and worth, and the affirmation of that in my children, pretty much says that I don't deserve this myself. My needs are no longer important, my views are not worthwhile simply because I love and spend my life raising my children. I've read that I couldn't possibly have my child's best interests at heart because I send him to a special school, or because I take them to church, or because I take them to therapy. I've read that I've given up because I limit how much therapy we do and because I don't drill my kids every waking moment, and that my children will be a burden to society if they are not independent one day (and heaven forbid if they still need help with personal care). I'm told that I am selfish for bringing another child into the world knowing that he too could have autism. I'm also celebrated because I wasn't disappointed when my second child was diagnosed as autistic, but I can't dare suggest that I sometimes have to speak for my kids (believe me, we're working on AAC, but it doesn't happen overnight). I'm so tired of reading that I don't share my children's neurology so I couldn't possibly know them better than anyone.

Let's go back to that idea of "presuming competence" for a moment, and indulge me- I mean no disrespect but I'm about to hijack the concept for a second. Let's presume that if I am given the right supports and understanding, then I may be able to learn and grow and develop to my full potential too- as a person, and as a parent. Again, I mean no disrespect, and no, I'm not autistic, though those online quizzes all say I'm not quite neurotypical either. I have struggled with depression and anxiety at different times in my life (and I'm not in the minority). There are times where my self esteem and confidence sits around the floor- never more so than since I started this parenting gig! Being an autism parent also doesn't exempt us from facing tragedy and hardships in other areas of our lives which affect how we cope, or function, as people and as parents, and it also doesn't exempt us from needing to feel valued and receiving affirmation for who we are and for what we do, in the same way that our children need it regardless of where they're at.

The problem is though, that we autism parents often shelve our own feelings. We ignore our own need for support and help until we reach crisis point. We soldier on, though we're told that playing the martyr doesn't help anyone (and that's true), but when we want to cry out for help we listen to the voices that scream that we're letting our kids down, and that we are blaming them when we acknowledge that we're struggling. We struggle to accept compliments, or encouragement as parents without feeling obligated to be offended on our child's behalf, when usually all the person is saying is, "Hey, you're doing a great job, keep it up" without meaning anything derogatory about our kids, or about autism for that matter. I say that all the time to my friends with neurotypical kids, because parenting is hard, and their response is usually 'Thank you, I really needed to hear that today.". So why is it so wrong for us to need and accept the same validation as parents from others?

We are our own worst enemies in this community. We have so much to learn from each other, and we have so much to offer each other in terms of support. We can be a real support for each other in this journey, and as I catch up with friends who are going through tough times at the moment- with their kids, their partners, or within themselves, and as I deal with my own struggles, I see that happen every day, and I'm so thankful for that. But on a bigger scale? We need to be valuing the person on the receiving end of the message we're so passionate about just as much as we claim to value their kids, and that's tough when they're not right in front of us.

We endeavour not to make our kids feel worthless and wrong as we teach them, so how about we approach parents the same way, because at the end of the day, most are just trying to do the best they can for their kids. Whether they're our friends or not, whether they ascribe to the same philosophies, or approaches as we do, or not. Whether they're new to this world, and grieving heavily, or they're further along the road to acceptance and even celebration, let's try to provide the understanding, the supports, and the encouragement that that parent needs for where they're at right now- and if you can't do that, perhaps help them to find someone who can. It's a big internet, an even bigger world, and who knows, you might even learn something yourself.