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Wednesday, 11 April 2018

Ambivalent April

You know life's been busy when the blog that used to be your sanity saver is gathering dust!


It's April, so I suppose I should be busily posting about acceptance/awareness, etc, but we're just too busy living it. I have to say, when I have ventured into the autism-related FB world this month I've retreated just as quickly. I just don't have the energy for the vitriol out there. Maybe being able to walk away is maturity, maybe it's peace with where we're at, or maybe I'm just tired and ambivalent (the last one is most likely). I did share something on my personal timeline back on 2nd April though, so I figured I should probably put it over here too:


"It's a tough gig we have here, but these two pocket rockets of mine make it all worthwhile every day. Autism is an integral part of the boys' identities and they would not be the kids we all know and love without it. Autism is not weakness, or something to be feared or fought against, but something to be valued, nurtured and respected. Today, and this month we celebrate who our autistic friends and family are, their achievements and all that they have to offer our world.


We live in a world of very high support needs in this household. That's our reality and it's one we've embraced. Will they work one day? Who knows, probably not. Will they need support forever? Absolutely. 


Does that make their lives, or mine a tragedy, or any less valuable? No way. They will impact the lives of those who are lucky enough to know them for years to come. They will teach others, they will continue to have friends, and they will make their own mark on the world, just like so many before them.


I am thankful that we are surrounded by people who get that, and who are thankful that they are part of their lives too. I am thankful that we have the most incredible school, therapists and supports who adore the boys just as they are and who see their potential. I am thankful that we have the funding to provide what they need. Most of all though I'm just thankful that I get to do life with these amazing kiddos. They make me proud every day and I wouldn't have them any other way."


I spend my days trying my best to love and nurture two incredible autistic boys so they can grow to be who they want to be, and I spend my working life doing the best I can to advocate for those who come my way (because quite frankly, our system sucks for those who can't advocate for themselves!). You know what? It's exhausting, but it's far less exhausting than living your life angry or upset because of what strangers say on social media. Real people in real life take effort- believe me, I'm an introvert, people wear me out! But those real people are so much more worth your time and effort.


This gig is hard- and "this gig" could be anything- you may be autistic, raising autistics, or an autistic raising autistics. Whichever of those you are, may this month be a time to celebrate who you/your loved ones are. I hope that whatever your take is on this month, that you have people to share it with who get it and who support you, right where you are.

Saturday, 15 October 2016

National Carers Week

This week is National Carers Week in Australia. It's a full moon, I'm feeling punchy, and I thought these were some fun facts worth sharing: 

-There are over 2.8 million Carers in Australia.
-They provide 36 million hours of UNPAID care and support every week. 
-The value of that unpaid care is $1.1 billion per WEEK.
-The maximum Carer payment of $797.90 per fortnight works out at just under $2.40/hr for a 24/7 job. 

So please, share your memes about people bludging off your tax dollar. "I didn't mean you.". Perhaps not, but you meant thousands of people just like me.

"Like" posts saying we should all have a cashless welfare card because we have no right to manage "taxpayer" money. 

Ignore our pleas for meaningful supports when you deliver an NDIS plan. Slam those who dare appeal or complain for being "greedy and ungrateful" or for "rorting the system".

Boast that children with disabilities access mainstream schools, then consider 15-20 minutes a few times a week adequate support. 

Force families to prove over and over again that their severely disabled adult son or daughter isn't capable of working. Just for fun, suspend their payments if they can't provide the evidence you need within 2 weeks.

We don't want thanks. We don't want pity. We DO want respect- for those we love and care for, and for ourselves. Most of us would do it all again in a heartbeat. 

It's not our caring load that destroys us. It's a system and a society that treats our loved ones and what we do for them as less-than. 

Happy Carers Week.

Wednesday, 5 October 2016

World Teachers Day

Facebook tells me today was World Teachers Day. Ours' are so great they got 2 weeks off to celebrate! 😜

In all seriousness though, I've watched my boy grow and thrive under the teaching of some of the most skilled, compassionate and creative people I've ever met. 

I'm no teacher, and I'm always fascinated at the methods used, to help him towards what they know he's capable of. The amount of thought, knowledge and planning that goes into a single lesson is mind boggling, and I know they never switch off- they're always thinking of their students, they genuinely care about our families, and they're always striving to learn and develop themselves too.

I've seen my Bubbly One go from an anxious little boy who was so very aware of his limitations that he'd run and hide when something new was presented, to a boy who loves to learn, has real friends, and who is comfortable in his own skin. A boy who is reading, and typing- and who argues with me on his device like the 8 year old he is!

A few years back all I wanted was my boy to be happy and safe, but these amazing people knew he was capable of so much more, and they've taught me that too, along with a host of other things no parent training course possibly could. They are like family and we owe them so very much. 

Quite a few follow this page too, so if you are reading this, take a well earned bow, a high five, a big Bubbly cuddle, or raise a glass. We love you guys and we're so very thankful for each one of you! 💙💙

Tuesday, 6 September 2016

Ready

Bubbly's trying to smooth out my frown lines again. He's not silly, he knows when I'm stressing, even when I do my best to hide it.

The panel in our area sits tomorrow to determine school spots for next year, and I just got Little One's preschool offer for next year today. Our Plan B is much the same as this year- two 6 hour days again and if he gets EI there an extra three hour program once a week (still unconfirmed but he should get in). 

I'm trying to be grateful. Our preschool are amazing. They provide 1:1 where no one else will. He loves them, and they love him. The third day that was a tiny possibility would've opened my options up as well as his though.

I'm trying to be gracious. There are other kids out there, older kids, who need spots as much as Little One does, who've probably patiently waited that extra year.

I'm trying to be patient. What's one more year? My career and my sanity have waited this long, and they're only little once. He'll keep learning and progressing.

But I also know what my Little One stands to gain from an early start where we've seen Bubbly thrive. Call me selfish, but every mother wants what's best for their child and their family. 

It sucks to have no real say over where my child will be educated. It sucks to prepare yourself for disappointment. It sucks to have his future in the hands of a group of strangers who will never even lay eyes on him, who've never seen him walking through the school singing a rare word: "READY!!". He's right, he is SO ready. 

I'm ready too. It's not just Little One who needs to stretch their wings and step out into the world. It's hard to have opportunities laid out before you- to really help others, to do what you're good at- but to have to shelve any real thoughts and plans until you know for sure it's safe to get excited.

It will work out. It always does, even if it's not in the way I hope or expect. So I'll try to leave this here, to breathe and enjoy the cool little fingers smoothing out my forehead; and to watch the dancing, giggling little boy who really couldn't care less which plan comes to fruition next year.

Saturday, 23 July 2016

How To Get Your Mother Out Of Bed- by The Little One

First give your mother ample opportunities to get up, and stay up. That bed is like a magnet that keeps drawing her back. Enlist the help of your musical friends. They may be thrown into hard to reach places, but these casualties will return in due time (besides, there's plenty more in Bubbly's room). 

Be kind and accept the food she makes you graciously. If it's not to your liking then release it to some poor soul who likes to eat off the floor. The food's always gone soon enough so they must be well-nourished.

Attempt independence. After all, she spends hours of her week on just that with you. Slowly drag a chair towards that high up food or musical item. Climb onto the bench. Safety first so alert her to the fact that you're stretching your horizons and knock something over, preferably the sugar. We haven't had ants for a while. 

If all else fails and she still returns to bed, appear angelically by her bedside. Stroke her cheek and unleash your most devastatingly cute smile (you'll need full eye contact for this one. I know, it's hard, but it's important). Then if she still rolls over and hides under the blankets gently place the full water bottle (sans lid that you broke last week) on the bed beside her. The gentle flow of icy water seeping into her clothing, pillows and mattress protector will ensure she is yours for the rest of the morning. 

Thursday, 10 December 2015

Living

Have you ever sat and watched several hundred photos transfer from your phone to your computer? I did that for 685 for them yesterday, and it was like watching the last 6 months or so come to life in front of me- the good and the bad. I don't just use my phone camera to capture the special moments that pop up with my boys, or even the every day. My camera roll is like my diary, my to-do list, and my "important stuff I need to remember" list. So not only were there two little boys growing before my eyes, there was also all of the hard stuff I've had to keep records of this year. Records of property settlement, photos of the stuff that was already broken when we moved in here, NDIS legislation, obnoxious emails from NDIS planners, text messages from friends dealing with obnoxious planners. 

I saw my boys grow before my eyes. I saw joy on their faces everywhere they were- at school, playgroup, with their therapists, with me and with each other. I saw them awake and asleep- because everyone knows that a sleeping child in our world is a "kodak moment"!

But it wasn't just their story this year that I saw, as has so often been the case in my camera roll. I saw me too. For the first time I sucked up my hatred of being photographed and I saw myself and the joy that my boys and I feel together. I saw our journey and our growth together.

I saw the Support group that I've been leading this year. The happiness on the faces of women who have come to be dear friends as they enjoyed each others company and the time they could spend together, just as they were.

I saw the special needs swimming club that I am so stinking proud of, but which I was also kind of pleased to be handing over to others with more time to love it. I saw my Little One clinging to his instructor, and I saw him gain confidence and skill in the water, and I saw Bubbly having the BEST time despite his annoyance with actually having to follow a lesson plan!

I saw the hard stuff. My battles with the NDIA to get my children the supports that they deserve, and the fights for others' children as they reached out for support against a system that promises much but doesn't deliver without a fight. I saw an advocate emerging in those photos, something I never thought I would call myself.

My overwhelming sense as I looked at those photos though, is that we've really LIVED this year. We didn't just survive. We didn't just cope. We stepped out of our comfort zone again and again, and we lived to tell the tale, even if that tale didn't always have the ending we envisaged.

Friday, 10 July 2015

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.