The Various Ways I have Messed Up Today and What are we Learning Really?

Holidays can be hard. I always forget this. Instead, I look forward to them, to officially Spending Time Together. Why, why would I do this? What do I think will be glittery and playful about 4 people with varying needs thrown together into a world filled with:

  1. No Routine (People ask: What time do the kids usually wake up? We have no idea. None. Some days it’s 5am some days it’s 9am – this is holidays, perpetual confusion and no knowledge of what is happening or when it may be happening).
  2. Loads of Toys (So. Many. Toys. Christmas Toys, Birthday Toys, Oh My God I Can’t Take It Anymore So Yes I Will pay $10 For This Crappy Toy So I Can Perhaps Have 10 Minutes Of Peaceful Grocery Shopping Toys: Do these toys equal happiness? No. No they don’t. We know this. We KNOW this. But we still do it. Clearly, we are lacking some serious causation skills. Don’t get me started on batteries.)
  3. Lack of Food (There is never breakfast food at breakfast time, there is never dinner food at dinner-time, and lunch is just this vague time throughout the day where we sob and eat crackers).
  4. Negotiating (Due to lack of routine/food we require negotiation to get food and go places. This is difficult enough between 2 adults who have probably eaten ½ bag of crisps and a nectarine for breakfast but when you add in a almost 5yr old who can sideline a conversation about perhaps putting on shoes to go shopping into a discussion about the mating habits of hermit crabs it can be time to sob and eat crackers before you’ve even brushed your teeth.)

There is too much noise for me. Too many voices, too many options and too much begging other people for 5 minutes to finish a cup of tea. I have that constant itchy awareness of dishes in the sink, clothes in the laundry basket, on the line, folding to be put away and the high possibility that there is wee on the carpet in the toilet. Tempers are frayed, instead of asking questions I make demands. Which, inevitably leads to the Boy yelling ‘I get to choose! I am putting my room in LOCKDOWN’ (a phrase which he got from I don’t even know where) and the Girl quietly but definitively saying ‘No Mummy’ and plopping down on the floor with the air of someone who is Not Moving Ever.

We attempt to placate the children with TV so we can work out what we’re doing, what we need to do and what is humanly possible to achieve. We say maybe 3 words to each other before Boy and Girl run into the bedroom and jump on the bed. The plan when we decided to have children in our lives was to respond to their needs with love and care and general respect – I do not follow the plan at this point in time. I yell, loudly.

This helps exactly no-one.

Having been told that your child is Autistic and that this involves ‘Deficits in Social Communication’ (Differences in Social Communication) there is an impulse to find the Learning in a lot of moments that may not necessarily have anything to do with learning and perhaps have more to do with me and my insecurities than him. This is especially true when I’m struggling myself. Instead of meeting the Boy where he is, I suddenly and inexplicably expect him to meet me where I am. At this point, I was consumed with ‘Why won’t my children Listen to me?’ with a side of ‘What about my needs?’ It’s easy to be sucked in by that fear that your kids won’t learn unless they’re explicitly taught every single thing. That fear that tells you that A Bad Day = A Bad Kid.

The Boy gets up, quietly goes into the back yard, comes back and stands in front of me with hands clasped behind his back and whispers ‘Mummy, I have a surprise for you. It’s not a butterfly. It’s a flower. You have to guess flower.’

I guess flower.

He presents me with a beautiful red hibiscus flower. ‘Now you’re happy!’

And once again, I politely tell that fear to Fuck Off. My child is learning. My family is learning. But most importantly of all, I am learning. I am learning where my own limits are, I am learning how lucky I am to be parenting these children, and that even if my Boy didn’t give me a flower today, that we would all still be ok. And that if I put my family in an uncomfortable situation (eg, holidays) then I don’t get to be all shocked when we react in uncomfortable ways.

I tickle bellies, I agree that today is a Not A Clothes day and we read books on the floor while munching on apples. I apologise for yelling and we all move on peacefully.

More or less.

L and I agree that today is a Shit Day and make amusing drinking signs at each other while pretending to play Garbage Trucks with Boy. After being wee’d on for the third time by toilet-learning Girl I hide in the pantry and scoff chocolate. This does not make the wee disappear. But it does make the chocolate disappear.

We wait for bedtime, we feed Boy and Girl in the bath. Baked beans. From the tin. They don’t even get separate spoons. We are ok with this. They are happy! They are playing penguin games and giggling. Happy! Finally, they are in bed, Boy is still wearing the same pyjamas he’s worn all day because they’re ‘cuddly pants.’ Again, we are ok with this. Happy! I kiss his baby cheek, stroke his face and tell him how much he is loved. How tomorrow will be a better day and that he is My Favourite Boy. He pulls his blanket around him and says ‘Yes, but tomorrow Mummy, if you yell at me, I will say ‘No Mummy! This is not a yelling house!’ and you will stop, DEAL?’ And I am so aware that this is a Learning Moment for me, not for him, and the best thing I can do here is make my beloved Boy feel less shit about a fairly shit day. So I say the only thing I could reasonably say – ‘Deal, ratbag, deal.’

And I go turn those amusing drinking signs into reality.

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Starting School and How I’m Really Really Not Ok

It’s a mixture of anger and fear. That’s some of what I feel regarding the Boy’s first year of school. While I’m sure that other Mama’s feel anxious and worried about their kid starting school too, I can relate somewhat to their concerns but I feel particularly alone in mine.

Lets compare.

“I am concerned about my child being sad and missing me.” Vs “There is a real possibility that my child will be taught that there is something systematically wrong with them.”

WebMD states that ‘Children with autism have trouble communicating.’ It goes on to clarify this as Autistic children cannot always understand what other people think and feel, and cannot express themselves (Autism, 2015). This is a lot of cant’s for a child to go up against. Particularly when the Autistic Community have proclaimed again and again that they ARE communicating, just differently. How would you feel if your method of communication was either ignored entirely (in favour of ‘does not communicate’) or discounted as not good enough. Research has shown repeatedly that what Teacher’s believe regarding their students is often what actually occurs – a self fulfilling prophecy (Jussim, Eccles & Madon, 1996). If a teacher believed that my Kid couldn’t communicate, that he doesn’t have the capacity for empathy and that he couldn’t express himself – how much effort would they put in for him? What would their daily conversations with him look like? Would they only talk to him to tell him what he was doing wrong? Other kids are taking homework home, what’s mine going to be taking?

The Autistic Family Collective has found that more than 44% of Bullying cases were started by Teachers (Toscano & Donnelly, 2015). Given the current deficits based definition of Autism I’m not surprised. When you put any child in an untenable situation they will react in untenable ways. Unfortunately when an Autistic child reacts the goal is often to vilify them rather than understand.

“I hope my child does well.” Vs “I hope no-one locks my child in a cage ‘for their own safety.”

Recently, there have been many horrendous examples of supposed Behaviour Management for Autistic children and adults. Highlights include a cage (Scarr & Van Den Broeke, 2015) and a coffin-like box (Toscano & Donnelly, 2015). If a child (my child, potentially) has reached the point where they pose a danger, than that is not their fuck up, that is YOURS. And if the Teacher in the classroom chooses to highlight this fuck-up by removing a child to a cage who is clearly and obviously in distress rather than oh, moving the rest of the class, sitting quietly beside the child while an EA looks after the other children, calling the Principal or basically any other person at the school who can legally be in the classroom; then the main thing they are teaching children is that

  1. People in distress are not really people and therefore don’t even deserve basic respect
  2. You can treat people like shit when you’re in the majority
  3. You can treat people like shit and you don’t even have to acknowledge that it is shit if that person has a disability, compassion is reserved for when people are ‘normal.’
  4. If you frame it as ‘but they needed some chill-out time’ then you get to ignore the fact that you probably dragged a kicking and screaming child to a box.

Do we believe for one second that these Autistic children and adults walked calmly to these cages? No. They didn’t.

“I am socially awkward around other parents.” Vs “How the fuck can I tell who will secretly be keeping a list of all the ‘bad’ things my kid does and who will then tell their child they can’t play with my child, whom amongst other parents is TRUSTWORTHY?”

I hear this so often. The loneliness that often comes with being the Parent of That Kid. The lack of birthday invitations. The lack of play dates. The wanting to explain your child to people that really, you don’t owe a goddamn thing.

My fear is that I am required to make my Boy more palatable to the world, when what I want to do is make the World more palatable to my Boy. That support is not support. That I am failing him in ways I don’t even know yet, because the world is ableist and I am a product of this. That in meetings with Well Meaning Educators he will be reduced to a set of attributes and strategies, and I will fucking assist them in this because it is the best we have.

That’s what I’m scared of. That’s what I’m angry about. This Boy, who has my heart in the palm of this hand and who loves me with such wild abandon – I could break him. I could send him off in a uniform and into a system that will break him. And I wouldn’t even know, not straight away. I’d just watch him slowly fade, as the bits of himself that are so fantastic, that give him so much joy – as he is taught that those bits aren’t useful, or worse still, aren’t wanted.

And yet. And yet, and yet, and yet.

I want the world to have him. I want his world to be Big, and beautiful and magical because he is all of those things. I look at my Boy as he navigates through the world – his world too (HIS world too!) and he looks so right. He drinks it in. I want the world to see this Boy clearly, filled with potential and love and perfection.

And so, as we have done so many times before, this Boy and I; we will hold each other’s hands and we will take a deep breath and together, together we will walk into the world and we will pioneer the fuck out of it. Because we know that sometimes, that’s what it takes.

Autism, (2015) WebMD. Retrieved from http://www.webmd.com/brain/autism/understanding-autism-       basics

Autistic Family Collective. (2015, December 17). Abuse by Teachers Widespread.Media Releases. Retrieved from http://autisticfamilycollective.org.au/2015/12/15/abuse-by-teachers-widespread-autistic-family-collective-report/

Jussim, L., Eccles, J., & Madon, S. (1996). Social perception, social stereotypes, and teacher expectations: Accuracy and the quest for the powerful self-fulfilling prophecy. Advances in experimental social psychology, 28, 281-388.

Scarr, L. & Van Den Broeke, L. (2015, April 2). Canberra principal suspended after cage built for Autistic student. The Daily Telegraph. Retrieved from http://www.dailytelegraph.com.au/news/canberra-principal-suspended-after-cage-built-for-autistic-student/story-fni0cx4q-1227289436987

Toscano, N & Donnely,B. (2015, December 19). Leading autism service to be investigated over restraint policy. The Age. Retrieved from http://www.theage.com.au/national/leading-autism-service-to-be-investigated-over-restraint-policy-20151218-glqo7g.html?utm_campaign=echobox&utm_medium=Social&utm_source=Twitter#link_time=1450509665