The day I told her she is Autistic

This post has been moved to michellesuttonwrites.com

http://michellesuttonwrites.com/2015/11/20/the-day-i-told-her-she-is-autistic/

The Weird Kid

More discussion last night with L about how school is going. Academically, he is powering on. Socially- not so much. His one friend has been absent for the past 2 days, so L chooses to be alone during recess and lunch times. This makes me a bit sad, but in the past I have told myself it's OK because he is happy that way, which kind of helps me feel better.

But it seems now that his desire to be alone if his friend is not there is causing problems. It's not that he couldn't go and hang around with other kids in his class. He'd be welcome to. He's been invited to. But he doesn't want to. They don't do things he wants to be involved in, so he prefers to be alone. This applies to everyone- even teachers. He told me that when he is by himself in the playground, people come up to him and try to talk to him. He thinks it's because they are being nice and checking up on him, but he says he finds it "creepy". He doesn't want people to come up and ask him if he's OK, or if he wants to join them, or even to just sit near him and say 'hi' when they do. He doesn't want to talk to them at all, even to say 'hi' back, because he doesn't know them, he doesn't understand what they want from him, and he just wants to be alone. His words. Some people have even placed a hand on his arm or shoulder as part of their greeting and he really *hates* that. So I asked him what he does if people approach him. He told me he usually doesn't answer them, and that he just walks away without looking at them.

E was listening to this conversation between L and myself. When L left the room she told me that she thinks if he does that too often he will become known as "the weird" kid and he will be picked on and harassed because kids will find it funny to see his unusual reaction. Which is exactly what I was worrying about as I was listening to him talk. She said some of her friends have already told her they think he is a bit strange.

Again, the difficulty of coaching him through this is that I am not there to see what these interactions look like, so I am not able to interpret the intentions of these "creepy" people and help him learn to interpret them appropriately for himself. I am so out of my depth.

I also worry about what is going to happen when L's one friend gets tired of playing the same things, and talking about the same things over and over again? I know that it is starting to happen. L says sometimes his friend wants to go and play with other people, and L doesn't want to join  them. Which is normal, and right. But sad for L, and for me. How long do we have before L is alone in the playground all the time? How do I help him gain confidence to be around people who have different interests to him, when he can already articulate that he knows people think he is "strange" (his words)?

The last thing I want is for my son to become known as "the weird kid". I talked about being weird in my post "The weirder the better", and I still believe there is nothing wrong with being unique or "strange" or  "weird", but right now this is causing my boy problems and anxiety. What should I do? If you have experience getting your own ASD teen boy through this stage, I'd love to hear from you.

Funding and other elusive things......

I wasn't going to blog this, but it's making me cranky so I'm writing it down.

It hasn't been a good week for L. It's NAPLAN week, so that's got him out of routine for a start. On top of that- So far this week he has had his bag raided at school (fortunately his new phone was in his pocket and nothing was taken this time), milk spilled all over his bag, had a bully shoving him around and trying to take things from his pencil case in class, and a bus driver decide to change the route because he thought no one needed to go down our street. This afternoon has been tricky for him because he is stressed out from all this stuff happening during the week, and he doesn't have access to the computer (his preferred way to zone out and destress) because his big sister has an assignment due tomorrow and she needs the computer to finish it up. I understand all this is the reason for his tears and tantrums tonight, but it doesn't make it any easier to deal with on a night when Hubby is at work and G is having an emotional night too.

It's hard to know how to help him. I can coach him all I like from home on how to deal with bullies, and that he needs to report what happens, but the fact is that he learns this stuff very slowly and coaching him on what to do is very hard when I wasn't there and have to rely on his very sketchy details on what happened to guide me. He doesn't just assimilate the information he needs on how to respond when someone shoves you in the hallway by seeing how others deal with it. He doesn't read the non verbal communication that goes on around him and use that information to know when something is serious enough to warrant reporting. He can't focus his attention amidst all the noise and movement on the bus to hear when the driver calls out "does anyone need this street", and even if he could he'd be too put off by the sudden change in routine to respond in time to prevent the driver changing the route anyway. And besides- what kind of a school bus driver does that anyway?!

I'm feeling a bit tired of having to make phone calls to every service he uses and explain to them that they need to be predictable or stand up for people who seem a bit unsure of themselves or a bit "different". It's good that when I do they respond well, and I've been happy with the schools response to the things that have happened this week, but it is so tiring having to explain over and over what needs to be done to help my boy.

Recent statistics released- which I'm sure many of you know about- say that 1 in 88 kids in the USA are Autistic. Of course the speculation is that there is over diagnosis going on... blah blah blah.... but the fact is that more and more kids are in schools, both there and here in Australia, who have higher needs and require more support to do well socially. If they aren't supported socially they suffer academically. So why aren't teachers and aides and support staff begin trained specifically to help ASD kids? It makes me even more frustrated when teachers give me feedback like- "when I use the strategies you give me for L in the classroom, all the kids benefit".

I guess part of my frustration at the moment stems from feeling like I've been chasing my tail a lot lately. I can't keep up with the pile of dirty clothes that appears every evening or the dirt on the kitchen floor, even though I don't seem to be doing much else. I think I'm in one of my busy-brain funks, and it's slowing down everything I'm trying to get done.

Two good things happened recently that have started me thinking. The first was I attended a meeting at which our local member of the Senate was present to discuss the recently published Gonski Report (review of how funding is provided for schools in Australia, with implications for the future of how funding for children with disabilities will be provided). The second was an appointment with G's new psychologist in which we discussed ways we can use the funding that is available for her Early Intervention therapies before she goes to school.

Both meetings gave me hope for the future by helping me realise that there are people out there who really do want to see things improve. However, both these meetings highlighted how tricky the current systems are to navigate as a parent who is already so busy just living the life of the parent of an Autistic child.

I asked the Senator how I can be involved in the process that informs the decision making about the way funding will be provided in the future, and he invited me to write a submission that he can take to the party room with my observations and suggestions from the perspective of a parent using the current system. I said I would.

When I got home and started thinking about it, I realised what a huge task this is. The report makes some good recommendations that if implemented will make a positive difference to the way funding is provided for ASD kids. I hope I can help inform the decision making process in a good way. I want to say something that makes a difference. I want to be able to speak with credibility. I want to sound intelligent and believable. I want my thoughts to count for something and to help kids who really need better support in the classroom. But I'm not sure how best to do that!! It's taking up a lot of my mental energy, and I'm feeling overwhelmed by it! Hopefully it's a bit like an essay, and I'll suddenly be hit by a wave of clarity and be able to sit and write it all out in a way I'm happy with. And amongst all those thoughts is the knowledge that even if I manage to write something kick-ass brilliant I am just one voice, one parent, presenting to a group of politicians who will be trying to make a reform that keeps voters happy while saving the government money.

So again, hope for good support at school feels elusive. And I think that's what it come down to. I'm frustrated with the intensity of this journey, and I'm frustrated that ultimately there is so much work to do along the way, and I am the one who has to do it. I have to prepare my kids. I have to advocate for them. I have to prepare others to help my kids. When things go wrong I have to figure out what happened and then make the calls and go to the meetings to fix it. I have to be available all the time. ALL THE TIME. I have to be available for my kids even when they aren't with me. I have to be available to take the follow up calls. I have to use my kid free time getting myself ready for their return and being prepared to help them pick up the pieces. I feel like I'm doing it alone most of the time.

I am tired. I know it's a phase- like everything. But right now I wish the kids at school would just be nice to my boy, and that bus drivers would just stick to the route they are supposed to drive. That's their job. I'm doing mine. I wish they'd do theirs.

Lefthandedness, and other things that should be hidden

4 year old G is pretty much ambidextrous. It's a handy skill, really. She draws with both hands, she eats with both hands, she can ride her scooter equally well leading with either foot. She seems to prefer to write her name with her left hand.