Why I Don't Worry About My Son's Future

There's a common thread in many posts about having a child with a disability, and the thing that comes up most often is the worry about "what happens when I'm not here anymore".

This post isn't about that.

I don't think about it too much, because there are more than enough things to think about in our present. Should the unthinkable happen to me I know that my boys have a great dad and grandparents that love them and who will do their best to give them everything they need. Old age though? I just can't think about it. I know that practically, they will have somewhere to go. I hope that they can be together, and that they live in a  time when they will have some choice in where and how they live. I can't imagine not being there for my boys, but I choose to trust in God to provide what and who my boys need when I'm not here any more. That's all I can do. He's never let me down before when they needed something and I have some peace for their future in knowing that.

But as I said, this post isn't about that. It's not about the "what's" of adulthood for my boys, it's about the "who's".

Who will they spend their days with? Whose lives will they impact? Who will they become?

There's a common pattern in many discussions online. It doesn't matter what the discussion is, but it tends to be those controversial topics like desiring a cure for autism, ABA, whether autism is a disability; we all know the topics that get people hot under the collar, and here's a sample of the comments that fire me up every single time:

"If your child was severe you wouldn't feel that way."

"Do you really want people to have to change your adult child's nappies/diapers?"

"They'll never get a job if you don't..."

"They'll be a burden to the taxpayer."

There are more, but I'm well aware that the above are incredibly triggering for many people, as they are for me. The thing is though, that they're not triggering to me because I am worried about those things. They are triggering because of the underlying attitude that feeds them. The attitude that says that a severely disabled person is worth less in our society, and that should your child grow to be a severely disabled adult it's because of some failure on your part.

At least one of my children has been assessed as severely disabled, or having "high support needs". Bubbly has a severe global developmental delay which includes a severe intellectual disability as part of his autism "package". He requires high levels of support and supervision for everything he does. The Little One is too young for us to make that call yet, but if he too were to fall further and further behind his normally developing peers then you can include him in this too. So to those who would assume my position because of where my child falls on the spectrum:

My child is severe, and you don't speak for me.

I have at least one child who will need some level of care for the rest of his life. He is not likely to live independently. If he works it will be with substantial support, and if he is capable of that, and is happy, I will burst with pride. But if he doesn't? If the best he can hope for is a day program, and possibly needing support for things like personal care, why should that mean he is any less valuable to our society?

The overriding problem with all of these considerations is not the supports my son may need one day or what they might cost. The overriding problem is the lack of respect and value for people with severe disabilities these attitudes reveal in our community. Our community doesn't know what a severely disabled adult contributes to this world because for most, they live in a world where they're not lucky enough get to know any.

As a very green 19 year old Social Work student I fell into a practicum placement in a post school program for young adults with disabilities. My first day shell shocked me. I met people like I'd never met before. Adults my age and much older who needed full support with everything they did. Many requiring meal assistance, support to move around and yes, personal care assistance- including changing incontinence pads. Most were non-verbal, and many had behaviours our society would be uncomfortable with from an adult. Some posed a risk to others due to aggression.

I fell in love.

I stayed, for over a decade until my own family joined the disabled community. I spent twelve years of my life with people who changed me forever, and who prepared me for the most important job I'd ever have. I worked with people who 16 years later still make me light up, and who taught me more than my university education ever did.

They didn't work. They didn't live independently. They relied on others for feeding and personal care. They had to trust others to know them and to understand them. They relied on others to understand their limited communication skills and to advocate for them. Around half lived in supported accommodation, and I supported some of them through that transition. I supported some when their parents divorced, and others when their parents or siblings fell ill and passed away. I went to the funerals of those whose lives were cut short after caring for them in the days prior. They made me laugh. They made me grit my teeth in frustration. They made me cry- with every emotion you can think of, from deep sadness and worry, to overwhelming joy.

They stole my heart, and they helped to shape who I am today, and in doing that they've helped shape my family and the mother my children have received. They gave me more than I ever gave them, and they gave my family a gift they will never fully understand- peace about our future.

Those who remain severely disabled throughout their entire life don't feature in the inspirational stories that you read on the Internet. For many each day is the same. Progress is slow, and regression happens. Their families struggle- you do hear about that. Their care costs money- you also hear about that. But when do you hear about the contribution that the severely disabled make to our community? You don't, but it is there. Each individual, just by being who they are makes an impact on those who they spend their days with. In that community, one which is largely unconsidered, and undervalued by our society there is happiness. There are the threads that make up the tapestries of many lives, and they shine bright and strong amidst the many cares and concerns of this life.

There is love. There is life. There is happiness, and there is hope. The future will bring it's challenges, many of which I already feel inadequate to meet, but what's ahead is less important than who is ahead. I can tie myself up with worry for my sons, and a future I have little control over right now, or I can think of those who've walked before them, and look forward to meeting the men they will become.

Baking With Bubbly

How to bake a cake with The Bubbly One:

Step 1: Bubbly enters kitchen, grabs cake mix box and demands cake.

Step 2: Explain patiently to Bubbly that we need to cook the cake and it takes a little while (insert approximate Bubbly time e.g. One Sesame Street, 15 songs on YouTube, whatever).

Step 3: Open box. Console Bubbly because the contents do not look like the picture on the box (visual fail, thanks White Wings)

Step 4: Use the pictures on the box to gather and add ingredients. Tell yourself it's a sensory activity as he sifts cake mix from bowl all over bench. Protect remaining eggs from destruction.

Step 5: Pre-warn Bubbly that the beaters will make a loud noise.

Step 6: Warn him again as you put beaters together. All good, he's already hiding.

Step 7: Ease cake into oven without third degree burns as Bubbly tries to get his hands in that battery goodness.

Step 8: Grudgingly let him lick the bowl (if letting him have the bowl isn't true love I don't know what is!)

Step 9: Try to distract him from cake that takes an eternity to cook.

Steps 10-553: Show Bubbly the timer counting down a few dozen times and try to distract with something more appealing than cake. Look longingly at wine bottle as you put the eggs away.

Step 554: Remove cake from oven without burning yourself or Bubbly, or dropping the cake. Degree of difficulty added if Little One decides to join the fun.

Steps 555-632: Repeatedly talk about being safe and not touching the hot cake. Administer first aid when he sticks a finger into piping hot cake.

Step 633: Try to ignore meltdown for withholding cake that looks perfectly ready to him.

Step 634: Finally give cake that's cool enough not to burn his fingers or oesophagus

Step 635: Hide cake before he eats the whole thing, or possibly sigh and put cake away when he doesn't like it. Same cake, different day, so who knows if he'll eat it!

When One Door Closes

When you're going through a tough time it seems like everyone tells you to "Just take it one day at a time". It's good advice. I've said it myself many a time. So for a long time now we've been trying to do just that. One day at a time, sometimes even just one moment at a time.

I feel like a lot has been put on hold while we dealt with the major upheaval that is moving house with two autistic children, and sorting out the last of those ties that my ex-husband and I have financially. We're almost there. I think we have this co-parenting thing down as well as, if not better than most too, and I'm pretty proud of that. For so long though everything has been a matter of "After we sell the house...", "After we move...", that I seem to have forgotten what exactly I was going to do once those things were settled. When I was so busy it was also easy to not focus on how I was feeling, or to look too far into the future and worry. Logistically we're settled now. The worst is over as far as supporting the boys to transition to the new place. It feels like home. But those things I was going to do? I can't quite remember. I know I have a plan somewhere for the Little One with what I needed to do next with him, but more pressing is the need to stop and to breathe for a moment.

I tried really hard to ignore that feeling- it's just not possible right now. The kids need me. The Little One has a list of things he needs, and Bubbly especially is having a hard time of it at the moment. We've had to change his meds again, and we just don't seem to be able to get the right mix for him. The last couple of days have been like having the preschool aged Bubbly back again, except that at 3-4 years old I didn't have what he was capable of last year in my head. He's regressing and it scares me. I try to tell myself that he's just preparing for a big leap forward as he usually does, but it feels different this time. The thing is, he's not unhappy, far from it- but it's in my face over and over again just how severe he truly is, and today was a frustrating and potentially dangerous example.

It was already a rough day. With the addition of another medication Bubbly's ADHD meds seem to have been rendered useless, and his sensory seeking is giving me flashbacks of harder days. He needed to stay inside as he hurt his foot yesterday and had a nasty cut that he wouldn't keep covered. We did go for a drive to get out for a while, and I tried to keep both boys entertained (and failed miserably). When the Little One went for his nap I resisted the urge to collapse on the lounge, and tried to engage Bubbly in some activities he likes in the sunroom, which is his favourite spot in the new house. Evidently he wasn't keen though because he got up and started to shut the glass sliding door. This door is a bit tricky and has a habit of deadlocking itself (it's the pre-extension back door). I normally have my keys in my pocket for that reason- but for the first time today they were hanging up near the front door- and though I raced to stop him, he got that door shut, and it locked itself. Bubbly realised right away that he couldn't open it again. He tried a few times, and I jiggled and tugged at it to no avail.

Bubbly looked at the door, at me, and back at the door. He didn't lose it. He doubled over with laughter, waved, and yelled "BYE!!!" before bounding away to the lounge room.

I stayed calm. I knew The Little One's window was accessible from this room and not totally closed because there's a phone cord running through there to to the sunroom. When I got my contents insurance they told me that the style of windows we have (roller handles make them open outwards) are more easy to break in through, so I assumed I could easily break in. Do you think I could pry it open though? It may as well have been reinforced steel.  I'm really questioning the extra on my premium now for these "less secure" windows!

So I knocked on the back door. I could see Bubbly happily sifting what I thought was ash from the (cold) fireplace. After a bit of knocking and calling him he looked up.
"Buddy, I need your help" and I signed "help".
He bounced to the door, signed back and said "hep". Then he tried the door again, and after much coaxing I got him to try to flick the lock, praying it wasn't really deadlocked. It was. He waved again, and said "Bye", like it was no big deal, smiled, and ran off again.

After trying again to pry the window open, I went back and knocked again. "Bubbly, help Mum?" 
"Hep" and he giggled.
"Go to Little One's room. Find Mum."
He pointed. "Mum"
I tried again. One step this time.
"Go into Little One's room"
He looked at me funny and ran away again to resume his sifting.
He knows he's not allowed in his brother's room. 

We repeated this routine a few more times. I stayed calm. It didn't seem quite real and The Little One was still asleep. I did have my phone in my pocket though (thank GOD!) so I called Daddy thinking he might be able to break in. He came straight over and we talked tactics through the gate, which of course I had padlocked to prevent the boys or dog escaping.

There's a small hole in the screen door. If Bubbly could get the keys (which he'd done this morning to tell me he wanted to go in the car) he could poke them through the hole in the screen to Daddy and all would be fine. So I listened to Daddy knocking on the window behind Bubbly- who giggled at silly Daddy and continued ripping apart my fake potted palm (the polystyrene under the fake soil was the white stuff I'd thought was ash).

I knocked on the rear door again.
"Bubbly, open the door for Daddy."
I got excited when he went and opened the wooden door.
"Dad!!!" He giggled again and ran back to the lounge and the polystyrene he was making snow around the room (he even turned the fan on so it swirled around like in "Frozen").
"Bubbly, get the keys for Daddy"
He got up, went to the door, and I heard him say "Key!". Daddy said he was pointing at them, but he just didn't seem to get that we needed him to get them down. We tried every way of asking him to get the keys down but it just didn't gel. So Daddy climbed over the 8ft gate and tried to help me break into Little One's window again. Again we were unsuccessful.

I tried again to get Bubbly to go to his brother's room to see Daddy in the window. He finally went to the room and peered around the door frame. He saw us. He giggled. He reached in and touched his brother's foot, and he bolted out of the room he knows he's not meant to go into!

While all this was happening I tried calling six "24 hour local locksmiths" (it was 2:30pm Sunday by now). Only one answered, and he was an hour away. I was starting to sound a little frantic by now and explained that my disabled child and toddler were inside alone, and he said to call him back if we could't get anyone. I called an insurance company who were happy to sign me up for a fee but would then be an hour or so. We didn't have that long so they suggested the fire department to break a window.

"We can do that ourselves." said Daddy.

So we chose the least dangerous window- over the kitchen sink with the fly screen on the inside to stop the glass, and of course then Bubbly came to watch us through it and to dunk the tomatoes I had ripening on the window sill into the abandoned washing up water in the sink. The window was the same as the others in the house.
"Bubbly, the handle. Turn handle for Mum?"
"Han"
He waved and gestured around it several times, pleased to identify it for me.
I gestured "Turn handle. Round and round."
After a few repetitions he managed to crack it a few millimetres, and took off again.
Then he returned with the tv remote because it'd gone onto standby mode.
"Buddy, first open the window please? Round and round" It cracked open the tiniest fraction, and he returned to the window with a honey jar. "Hun?"
"Yeah buddy, open window then Mum can get honey."
He went to the drawer and got a spoon, and took off with the honey. So independent when he wants to be!

By this stage Daddy had a brick. He tried gently to break the glass, then had me check Bubbly was in the other room, aimed and threw it. The breaking sound gave me flashbacks of Bubbly running head first through a window last May, but I sucked it up and talked to Bubbly through the door when he came to investigate the smashing noises. That was the first time he began to look upset. Until then he'd thought the entire situation was highly amusing.

Daddy climbed in (I'd have had no chance!) and opened up. We cleaned up the glass, we cardboarded the window, and we cleaned up the polystyrene "snow" that was EVERYWHERE inside. The Little One slept through the entire ordeal.

So we survived unscathed other than the cost of a new window pane. I'm not a wreck because no one got hurt, but it's made me think, not only about the spare keys that I will be having cut tomorrow, but about how to proceed from here with Bubbly. He locked that door twice more this evening so he clearly didn't link up what had happened. At seven years old he struggled to follow very simple one step instructions. His communication stopped at identifying objects or people most of the time- and this was in a happy, baseline state. If he'd been distressed things could have been so much worse. I'm also conscious that at the end of last year he probably could have followed a couple of those instructions with enough repetition. There's a clear regression there, and it's not just with the move and the med change- it's been building for months now. I don't know where to go from here, but in the days ahead I'll be talking to people who I hope will have some ideas for us.

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.