Thursday, 1 January 2015

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