25 April 2012

Life is good. I'm drinking the Son-Rise Kool-Aid.

Day 3
Another big day. This place is truly life-changing. Honestly, well and truly. Changing my perspective on my kids by changing my beliefs is really amazing. Crackle can grow and learn and has limitless potential. I've always believed it of the other two, but now I believe it of him too. The problem was never that he couldn't do it. The problem was that I couldn't envision how I could help him do it. If I can't even begin to believe that I can teach him, how can he ever learn? And ABA doesn't work because it teaches him to do something in a rote fashion so that he can do it if requested, but it doesn't even dream to teach him to be socially well-adjusted. That's just "not possible", they say. HA. After what I've seen? No way. I do not accept this.

Wait and see. I'll post updates.

So we talked about how to inspire growth in them. Celebrating "green lights". Green lights are what kids give us when they engage, make eye contact, make physical contact, make verbal contact. When they do this, we celebrate them, and then respond. We can respond by building on the "ism" (the son-rise word for stim - don't ask me, I don't know). So suppose he's stacking socks and I'm stacking with him. He makes eye contact and is engaged. I could build on it by adding sound effects. If he likes that and wants me to do more, I can make a game out of it where we do it together. I can keep doing this until he's done. Then we go back to the isms. Repeat.

Initiating is developing his motivation for me and what I'm doing by presenting something new to him. So supposing he's been wandering and then he comes over and sits on my lap. I can initiate any game I want to work on some goal. So maybe my goal is to get him to say "ball". I could grab a ball and start tossing it and boucing it and being super silly and goofy with it. The more energetic and enthusiastic the better.

Requesting is kind of self-explanatory. I'm requesting something of him. But only when he's super motivated. So he's enjoying the bouncing game and he wants more. Then I can say, "Say BALL!" and then pause for a while and give him time to try. I can make encouraging faces and smile, but don't say anything for a bit.  Ask again. Pause again. Celebrate ANY attempt. If he shuts down, then we do the isming again.

In and out of social interaction. It's all good.

You know, before I do more details, I want to say what I like best about this. It is *so* respectful of the child. There's no telling him to be quiet, sit down, shut up, do this, do that. No physically manipulating him. It's gentle and it's love-based. It's fun and exciting. I'm still not sure where I'm going to find the physical energy. But I will somehow. :)

We also learned about the developmental model. I have to review my notes on it tonight, but I have a few details to share. The four core areas of the social skills we're working on in autistic children are eye contact and non-verbal communication, verbal communication, interactive attention span and flexibility. There are several stages to each, and a child can be at different parts of each

You can never be diminished by trying and not succeeding. You can only be diminished by not trying. Want things for your child. Want things for yourself. And then TRY to make it happen.

I am so sure this is the right program for Crackle I'm coming back for more in November. It's magnificent. I have never felt more sure of anything in my life. Truly.

Tomorrow I have a consultation with a teacher and Friday I have a meeting with a counselor. Because *I* need to be okay to do this. I need to be sure of me and sure of myself. My doubts will only get in the way of what I can do for the kids. Think of all the success through adversity stories you ever heard. In even one single one did the person say, "I was sure I couldn't do it"? Or are they, "Everyone said I couldn't, and at times, I had doubts, but I knew I could do it and so I made it happen." Yeah. That's what I thought.

I know I'm going on at length and basically none of you are here for this. I promise to get back to feminism, socialism, and christianity at some point. I'd have liked to have done a big post on M312, but they scheduled it for the wrong week. And anyway, you all know how I feel.

Thank you again for helping me on this amazing journey. G'night comrades.

p.s. Annoying people are still annoying me. I've decided their kids get their autism from them, and that I need to accept them and celebrate when they do what I want. :D

24 April 2012

Day 2 - Son-Rise

Day 2 - Son-Rise
Today session on designing the playroom, and another on language development. They were both fascinating and left me with a lot of questions. Good thing I have a consultation booked for Thursday.

The Playroom - the idea of the playroom is to be a safe, distraction free environment for the child and parent. It's a room in which we can give the kids full control of their situation. They can have whatever toys they like, for as long as they like. We say "Yes" to everything in there. I'm going to set up the top of the stairs, I think. Anyway, the playroom is where we can play interactive games, or I can just join him in his isms (repetitive behaviours) so that he feels safe, loved and accepted just as he is. They were very clear about keeping the child in that room, so that he can learn that he can have control, can feel safe and loved, and that it is predictable. The outside world is so unpredictable for people with autism. I'm concerned about this for Crackle, because he loves to be outside. He loves the playground. And he sleeps a lot better if he gets to go out a lot. And what about the backyard? And when it's too warm? Obviously, I'll do what's right for him, not what they tell me to do (btdt, spft (still paying for therapy)). :) But I may try it their way for a while just to see if it inspires language and social interaction.

No electronic anything in the playroom. LOL. So none of Crackle's favourite toys. Gotcha. That blows, but I understand the point. Actually, they want us to remove all screen time from them. Not going to happen. Not that Crackle is interested in screen time (he's more of a bleepy bloopy toy boy), but Pop is. And he uses them to interact. They're not getting in his way.

The playroom is to be the happiest place on earth. Like my own personal Disneyland without the evil and noise. I have to be happy to go in there, show him how much fun it's going to be. I'm a bit nervous about it, so I'm hoping I get over that, because he'll pick up on that for sure.

Language - Wow was there ever a lot of information here. It all depends on what stage of language development they're at. For Crackle, I'm going to be doing a lot of celebrating any sound he makes and pretending that he was asking for something in particular with the noise so that he gets the idea that making noise gets him something. He already sort of does, so I hope this works. There's a technique called "highlighting words" that I think may be quite useful. The example she gave was about playing a game of "swing". So I'm swinging him and instead of saying, "WHEE!" or something, say "Swing! Swing! Swing!" When I put him down and he wants to go again, look at him and say, "SWING!" and then do it again. If he makes any sound, celebrate as if he said it perfectly and swing him. NOT that there's room to swing in the playroom I have planned. Hell, there's not a room in the house big enough for that.

For Pop, we're going to work on some imagination games. That should be a lot of fun! It is to stimulate spontaneous language.

We're supposed to stop talking so much and do some listening. Don't narrate. Don't fill silences. Only speak to communicate. Give him time to process and respond. Should be interesting.

Another interesting piece was assuming that they have receptive language, even if it doesn't test well. Because they are probably simply not showing us their understanding. So we're to explain everything, in detail, because hearing what's going on will help them to process what is otherwise baffling. "Why can't I have another grape? You've given me 50 in a row! Why all of a sudden no more?" So the idea is to explain in detail that if you eat any more, you'll get a stomach ache, and then you'll be uncomfortable and you won't like that, so I'm not giving you any more because I love you and want you to be comfortable." Flies in the face of ABA. Again.

The battery on the laptop is dying and I don't feel like getting up to get the charger, so I'm going to bed. My roommate is not snoring tonight, so I should be able to sleep. The earplugs suggestion was good, except that I'd have slept through the alarm. Tomorrow she knows to wake me. Goodnight comrades!

23 April 2012

Day 3

I know, I missed Day 1 and 2. I'll catch you up later. Short version: Seaplanes are the best way to fly short distances. Newark sucks. United sucks worse. I am not meant to drive on Interstates.

Day 3. Or Day 1 of Son-Rise
This morning we had a presentation by Brynn about the basic principles of the Son-Rise program. There was so much information I can't even begin to process it yet. I will literally have to go through my notes to even begin to disseminate it. And I'm too tired right now. She's very enthusiastic. :) A few things stuck with me:
-When teaching a child with autism, we are selling social interaction to them. We need to make social interaction fun, exciting and better than what they're doing.  I like that.

-Hope means "I will try". There is no such thing as false hope. You can hope for anything. Whether it is realistic or not is irrelevant. You can hope. All hope means is that I will try to make it happen.

-Don't try to force a child to interact with you. Just as you wouldn't get in anyone else's face, don't get in theirs. You can be enthusiastic, fun, goofy and silly, without being obnoxious. Respect the child. The child is not less of a child because of autism, deserving of less consideration for their feelings, boundaries, etc. Would you like it if someone forced you to look at them when you didn't want to? No. So don't do that. Make them want to look at you.

-Social interaction is the goal. All the rest is gravy. Who cares if he can do math if he can't interact with people? Who cares if he can write the letters of the alphabet if he can't have a friend?

William, Brynn's husband, another teacher here, gave the afternoon talk. He was also chalk full of information. Lots of talk about enthusiasm and energy and why that matters so much.

I am really excited about trying this stuff at home with the kids. I'm so sure it's going to help. I just know it. You know when you hear something that is just right? It's that. Honestly, this was worth every cent and every ounce of energy. And if it works even half as well as I expect, I'm coming back for more (prepare for another ChipIn campaign! I underestimated cost a bit... Oops!)

After those sessions, someone talked to us about the Option Dialogue process which is self-help stuff. Stuff I'd have called utter namby-pamby bullshit a month or two ago. But it's interesting. It's about looking at why we're unhappy, angry, upset, etc. in certain situations, and what we can do to change it. So, "WHY?" Why am I mad when someone is staring at me in the grocery store because my boy is screaming? Why? Because I want them to see that he's not being bad. Why is that important? Because their perception matters? Does it? Why? Because ... I don't know. I must know. Why does it matter? Because it bothers me that they think I'm raising a bad child. Why? etc. It gets me to the core belief that's causing the unhappiness. And apparently that can change. I say apparently because at this point, I'm skeptical. But I promised to suspend disbelief for the week. LOL. Anything is possible, right? Right. Plausible? I dunno. We'll see. But I'm keeping an open mind.

After that, we had a break, I called the kids. This place is in the middle of freakin' nowhere, and the cell service is nil. Well, apparently AT&T works, but I have t-Mobile. Grr. And the wifi isn't the best. I can get text through, and sometimes voice, but not video. There's no time anyway.

I am finding a few things difficult. 1) I hate having a roommate. Even one as nice as mine. She snores. I may ask for a new room. Because I won't sleep through this. It will probably hurt her feelings, but if I don't sleep, I don't learn, and that would be a waste of my time and money. I shouldn't sell myself short for someone else's feelings. 2) There's no food I can eat. The cook told me they should have warned me. I told her I'd told them and they told me there were plenty of gf options and of course the cook would be sure there was no contamination, blah de blah de blah. She shook her head and showed me a fridge. But I have no time to drive into town to get food. So I'm doing apples and bananas and hard boiled eggs. 3) Three hour time change. I shouldn't bitch. There are people here from New Zealand, Nigeria, Kenya, India, Britain... yeah. But their situation doesn't change mine, so bitch bitch bitch. 4) Other autism parents. Jeezuz. One can see where some of the kids get it from. (I'm sure people say this of me too, and they're probably right). One told another not to feed her son soy because it would make him gay. UMMM. So many problems with that. First, it's bullshit. Yes, there are phytoestrogens and it can, if eaten in massive amounts, affect hormone levels. It will NOT make him gay. Second, what's wrong with gay? (In this woman's case, plenty, because in her country gay will get you killed. So despite the fact that it's bullshit, she's not going to risk it. GAH). Some are massive know-it-alls. Some are angry as all hell. Some are happy to talk at me for as long as I'll let them, but have no interest in hearing anything I have to say. And not a single one of them has been able to talk about anything other than their children. *sigh*

After "supper" (2 boiled eggs, a banana and an orange) we watched the Son-Rise movie. It was a cheesy, made-for-tv, 80s movie. The story was lovely, but I'd already read the book.

So now I'm going to bed and I'm going to try to sleep through the snoring. We'll see. If it's a big problem, then yeah, I'm going to go talk to them in the morning. I'll warn my dear roommate so it's not sprung on her. I am NOT looking forward to that conversation.

Goodnight, Comrades.

19 April 2012

All good subject lines already taken

Saturday is the big day. I'm off to the Autism Treatment Center of America for the Start-Up course. I am so excited. And more than a little scared. I've never travelled on my own. And certainly not in big unknown airports and with rental cars and ... GAH! Scary. But kinda fun scary, like a roller coaster.

I'm going to take so many pictures. :)

Schedule so far is:
Saturday: Fly to Seattle by seaplane (how cool is that?!)
Sunday at the asscrack of dawn: Fly from Seatac to Albany, via Newark, NJ. Rent a car. Drive to the Option Institute in Massachusetts.
Monday - Friday: courses (which begin at 8:30am, which is 5:30am my time. God help me. I am NOT a morning person.)
Friday night: drive to Hartford.
Saturday: Fly from BDL to YYJ via Chicago O'Hare and Seattle. Arrive at Midnight.
Sunday: Collapse.

I'm somewhat worried about the food situation. Gluten is a bitch to control, and although they promise gluten-free options, I'm nervous. Especially since I don't eat meat. And by "don't" I mean, "don't dare unless I feel like getting punched in the stomach repeatedly and can't find anyone to hit me". So I'm going to stop and buy some fruit, some almonds and some Lara bars. I can survive on that for a few days anyway. Maybe I'll lose some weight. Win win!

So, there's still time to chip in (see the widget on the right) if you haven't already. And if you have, thank you again. I cannot tell you how much we appreciate it. And if this program works, and I go back for more information, I'll be hitting you up again. :) UPDATE:  I lowered the amount to raise to reflect the money that came in by cash and cheque.

In kid news, Snap has a girlfriend and I love her. Crackle is doing well off ABA, giving me more eyecontact for sure. And Pop is too adorable to explain. An example? He comes into my room in the morning when I wake up (he's up with Tony well before I am) and says, "Mowneen Mummy! How you thmowneen?" He snuggles on my lap and says, "Mo Mak an Ruby! Pweeeeeeeeeeze Mommy?"

And in Tony news, he survived this round of cuts in the civil service. Thank God.

And as something I just had to laugh at: Snap told me that the senior class at her school went to Mexico for their class trip. And one kid got caught at the border smuggling pot. Out of Mexico. Into BC. Um... the stupidity. It burns.

17 April 2012

Irony, defined

Oh man. I cannot stop giggling at the ridiculous irony of a journalist telling civil servants to stand up to Harper. Sure, dude. You first. And can they also take some advice from the Catholic Church on how to be good to children? And how about some advice from a creationist on the scientific method?

Harper has systematically punished anyone who dares to stand up to him and his government. One top level civil servant after another has been fired or muzzled for daring to talk to the press. What the hell do you expect? Yeah, they're all just going to quit, right? Because the economy is doing so well, they'll find work in the private sector, for sure.

Have you not seen the list of bureaucrats who have stood up to him and been silenced? No, probably not, because the media is only interested in them for about half an hour. The same media who accepted the "Only 2 questions" rule during an election. The same media who gives them pass after pass on the tough questions. The same media whose best-asskissing members were appointed to senate.

And this is who is telling civil servants to stand up to the Harper Government (tm)? PUHLEEZE.

10 April 2012

My line in the sand

Dear Prog Blogs. I'm out. I've been out since the beginning, I just have been too damn busy and stressed to say so.

It's like this: When you allow your members, supposedly progressive members, to not only debate the limits of women's rights to bodily autonomy, but to condone the government doing the same, I will not be part of it. I will not be affiliated with it. I will not put up with it. I'm out. Furthermore, calling it silly, screeching, and a trivial waste of your time? Fuck off.

You know, if banning abortion after 24 weeks only led to a ban on elective abortions after 24 weeks and nothing else (no other implications whatsoever), it would still be wrong, but I wouldn't be screaming quite so loudly. Because it would maybe affect 3 people. I'm with Morgentaler, there are some ethical concerns at that point. HOWEVER. The ethical concerns of legally defining that date are even more grave, and have a lot bigger fallout. Women must never have their bodily autonomy compromised. Our uteruses do not belong to the state. At any point.

At some point, I will explain in more detail, but the family needs me more than this blog does. Later.

04 April 2012

The unlikely enemy of traditional families: Conservatives

I am a stay-at-home Mom, married to a civil servant. I am Mad. No, I am goddamn good and furious. The Theocons love love love to make things easier for traditional families. They give us $100/month for childcare, whether we need it, use it, or not. The undertone from most of them (and it's overt in many) is "If you can't afford for the Mom to stay home, don't have kids." It's sexist bullshit. Some are "generous" enough to say "parent" instead of Mom. Most aren't. Regardless, they live in a non-existent utopian past where Mom stayed home, baked cookies and cleaned the house wearing a dress and heels. I'm living it about as closely as it gets. I stay home, gave up my career, homeschool the kids (except the teenager - I'd kill her, or she'd kill me. Hard to say who'd snap first), take them to church. If I voted Conservative, wore a dress, and stopped swearing like a sailor who just dropped an anchor on his foot, I'd be the perfect StepCon Wife.

So why am I mad? Because see the second sentence. My husband is a civil servant. The only thing that allows me to have the lifestyle I have is his job. And the HarperCons just cut 19,200 of those jobs. The Cons crow about the cushy jobs, with high pay, and good benefits that are just leeching off the taxpayer. We're screwing them, dontcha know? "Get a job and work hard like the rest of us!" "No one else gets these benefits". RIGHT. They don't. Because the private sector cares only about profit for the owners. The government is supposed to rule for the benefit of the people. I mean, seriously? You want me to stay home and be the Mom, but I'm supposed to do it with my husband working at the mercy of a corporation, with measly benefits? How does that work?

And you know what else? I'm not living high on the hog. I have a modest 3 bedroom townhouse (for 5 ppl) that I'm paying off. A huge student loan debt that we rolled into our mortgage (and it's still cheaper than rent here - I checked). We have one vehicle, a 6 year old, secondhand minivan (Halen the Loser Cruiser). I shop at thrift stores, and cruise clearance racks. I buy furniture on UsedVictoria. I haven't bought a book since I left university 8 years ago. I donate money to charity. And the vast majority of the rest goes to gluten free food, bill,s and the kids health and therapy. I budget $35/wk to frivolity. For the whole family. That's $7/day spread over 5 people. I'm not kidding. And I'm not complaining. I like how I live. I like my little house, my Loser Cruiser, my thrift store clothes. I'm happy with my life.

We cannot afford for me to stay home if Tony loses his job. We cannot afford for me to stay home if he has to take a pay cut by moving to the private sector. We cannot afford for him to lose his benefits. If we lose insurance benefits for speech language pathologists, chiropractors, physiotherapists, naturopaths (and yes, they do good work. but you have to make sure you have someone who has an ND degree, not just someone claiming to be a holistic medicine naturopath), prescription drugs... OMG. That didn't even hit me until now. Losing the prescription drug coverage alone would be catastrophic. The rest I could make do without, but it would lower my son's quality of life considerably. The prescriptions? Holy shit... I just got cold shivers.

And I can't work now. Crackle can't go to school, and the kind of job I could get at this point (7 years out of the field, I can forget getting back in) wouldn't pay for the kind of care he needs. I don't have family in the area, and having been Mom to special needs kids so long, I have no friends either. There is no one to look after them but me, or a paid professional in our home. And we'll never afford that.

The high paying union jobs protect families choices. They allow for one parent to stay home and do the childcare if that is right for the family. They allow parents to get better healthcare for their kids than they might otherwise afford. And no, that's not fair. But when one kid has nice clothes because his parents gave them to him, and the neighbour's kid is in rags because his parents would rather buy a new table for the dining room, you don't take the nice clothes off the first kid because it's not fair. You kick the neighbour's ass and make him provide for his kid! (not a perfect analogy, but you get the point). Employers have the obligation to provide a reasonable living to their employees. And by reasonable, I mean, "One person can provide for a reasonably frugal family".

Look, you can't have it both ways. You can't expect for someone to stay home with the kids, and then not provide a way for them to do that. The private sector doesn't provide many of those jobs. Hardly any at all. Unions try to protect those jobs, and the theocons, who so strongly push this way of life, fight them every step of the way.

We are not "leeches". We are not "sucking at the government teat". My husband goes to work and works hard at what he does. He provides a service for the money he gets. Yes, there is some dead weight. The unions are not perfect. By protecting all their workers, they sometimes protect those who milk the system. But those people aren't as common as the screaming masses seem to think. Like Welfare Queens. Sure, there's a few. But they're not the vast majority. I would frelling love it if the cuts that are coming would be directed at those people. That won't happen and that's a problem. But you know, baby... bathwater... Good heavens, there are a million ways they could save millions of dollars. Shit, just hire me as a consultant for 1/4 of what they paid the last guy. I can make a budget go a LONG way. I think I'll make that another post. This one's getting long.

So next time you think about "government cuts" remember, it's people. It's people with families. It's families with kids. Kids with disabilities, kids who play hockey (HOLY CRAP EXPENSIVE) Families with elderly parents who need live in help, or need to live in a care facility. Families with diabetics who rely on benefits to pay for test strips. Families with health problems. These people suffer when they're not protected by union jobs. It's hard enough doing it with the support of a good job. I shudder to think what it might be like without it. I guess I'll find out if Tony loses his job when the cuts come down. I pray I don't. And I pray that somehow those who do will muddle through.

02 April 2012

I am plenty aware of autism

April 2 is Autism Awareness Day. Every day is Autism Awareness Day in my house. Mr Crackle has screamed himself hoarse in the last couple of days. It's been a bit rough.

I've always thought that people are aware, they know there's such thing as autism. But now I have kids on the spectrum, and I've become aware that people know autism like they know _____. Imperfectly at best. Comically at worst.

So here's a list of things about autism that I wish everyone was aware of:

1. Autism is different in everyone who has it. Just because you know one kid with autism, don't expect every other one to be exactly the same. For example, some autistic people like to be hugged. Some can't stand to be touched.

2. People who have Autism are people first. That is, autism affects a person, but it does not make a person.

3. Rainman. Seriously? Enough with Rainman. Furthermore, Max from Parenthood is a good representation of what one child with autism might look like. He isn't like any of my three. (See 1)

4. All autistic people do not have some special skill or talent. (See 3). Some do. But some don't. JUST LIKE EVERYONE ELSE. (See 2)

5. Parents really really hate being told that God gave this child to them for a reason. No link here. It's ubiquitous. Honestly, the cashier at the grocery store told me this last week. I told her "then God is an asshole." She doesn't like me anymore.

6. Autistic people do not live on another plane of existence. Stop saying that.

7. Autistic people are not "touched by angels". Stop saying that too.

8. Autistic people are not all super smart. (See 2). Yes, they tend to have higher than average IQs, but there are some with very low IQs, and many with average IQs. They may also have high IQs and learning disabilities.

8a. Autistic people are not "retarded". Stop saying that. In fact, stop using that word entirely. It's disrespectful and hurtful, whether you mean it that way or not.

9. Autism is not a mental disorder. It is not caused by abusive "refridgerator mothers" (always the mother's fault, you know), it is not caused by trauma. It is genetic and epigenetic. It runs in families. Or it doesn't. Sometimes the child is the first one in the family to have it. His or her children will have a higher chance of having it.

9a. Autism is a medical condition. Some say disease, some say not. But it very often affects digestion, brain function (seizures, in particular). It comes with metabolic disorders and mitochondrial dysfunction. These occur at a much higher than coincidental level in the autistic community. Whether they are the cause, the effect, or comorbid conditions is up for research and debate.

10. Autistic doesn't have a look to it. "He doesn't look autistic"? Really? Give him two minutes. Also? Stop saying that. It's not the compliment you think it is. In the same vein, "But he can talk!" is just ignorant. Lots of people with autism talk. Two of mine never shut up. I'm not sure why people try to talk us out of the diagnosis. Do they expect that we'll say, "You're right! He doesn't look autistic. I'll stop spending all that money on his therapy right now. Thanks for the heads up!"

11. I honestly don't care what caused my kids' autism. What I care about (most) is helping them navigate this world through their autism lenses. Preventing it in others is important, but those who are here and trying to cope need help too.

12. Some people want a cure. Some don't. There isn't one. There never will be. Because autism isn't one thing. I'm pretty much certain of that. (More here and here). Also? Stop asking me if I ate a lot of tuna while I was pregnant. It's annoying. There are a number of treatments that help various people with autism. Not a single one of them works for every person with autism. I don't think there's even one that works in more than 60%. That's why some people get really annoyed when asked, "Have you tried...?" Because we have. Or we're all burned out on trying anything else.

13. Autistic behaviours (stims / isms / repetitive exclusive behaviours) cannot be changed with "a little discipline".

14. Staring at a caregiver of an autistic person when the person is behaving outside of societal norms is not helpful. "Do you need help?" is usually acceptable, but take no for an answer and back off. The odd time, I've said, "Yes. Watch that the little one doesn't run off while I calm the big one down." So yes, it is okay to ask. That being said, a snappy, "NO! Get out of here!" isn't personal. It's an overwhelmed caregiver trying to make it not get worse, because sometimes a stranger's presence escalates things. Smile, say, "Gotcha!" and leave.

15. Never ever ask someone, "What's wrong with him?" That's our special little child you're talking about. Nothing is wrong with him. There are parts of his brain and body that don't work like they should. What's wrong with you? Enjoy the person for who he or she is. If that person feels like telling you about his/her autism, or the parent does, then consider yourself lucky and listen. If not, just treat them the way you'd treat anyone else. If you suspect that person has autism, maybe just be a little more considerate of sensory issues, and refrain from touching them. Don't wear perfumed anything. And moderate your volume. That's good advice for dealing with anyone, but it's especially important if you think someone has autism.

16. People with autism can and do experience empathy. Autism Speaks can go straight to hell for saying otherwise. Autism makes it more difficult to make connections between people, because people with autism don't always exhibit their empathy the way others expect. So they come off as cold or uncaring. But they are not. Some are so empathetic or empathic that they are very affected by others' moods. Also, when people with autism are engaged in their repetitive behaviours, they do it to the exclusion of all else. It's usually a way of processing or blocking out the sensory stuff that is bothering them. At that time, they won't notice others feelings. That's pretty much like the rest of us, no? If I'm sitting at the computer, reading, and I'm zoned into whatever I'm reading, I probably will not notice what's going on around me. It will be easier to get me to come back to that than it will for someone with autism.

17. Despite what all the "Myths debunked" sites say, autism is an epidemic. It's gone from 1 in 10000 30 years ago to 1 in 88 today. And it will be more. It is NOT just better diagnosis and more awareness. I would very much like to see what the rate of "Autistic Disorder" is vs. the rates of "Asperger Syndrome", and how those have changed over the years, but thanks to DSM V, that'll never happen. I suspect the AS rates are rising faster than AD, but that the AD rates are scary high.

I spent the better part of two days writing this. I read a lot of blogs and articles, and I'm mad about a lot of it, and sad about a lot of it. But the best thing I read was this:

So why do I not want to accept autism? 

Because I truly believe autism is holding my daughter captive.

Oh, she's still my daughter, no matter what.  And I still love her unconditionally, with every fiber of my being, all the more because I chose her.  If she stays this way for the rest of our lives, so be it.  And she will never hear the words, "I hate autism" cross my lips or see them on this blog.

But autism makes me mad.  And sad.  And frustrated.
Because I believe it's holding that little girl that I remember captive.  That little girl I remember is in there somewhere, buried underneath a brain that somehow got confused.  A hostage of a mind that no longer works as it used to.  

It's those feelings that spur me on and keep me fighting to win back that little girl I just can't forget.

But if that little girl never returns to us again?  I'll still keep fighting for her.  To make her life count for something.  To have her become exactly the person God intended for her to be. 

And I will love her, forever and ever, no matter what.

Do I hate autism?  No.

Do I accept autism?  No.

But that's just my story.

01 April 2012

My April Fools Baby

It's the last birthday of the month of birthdays. Pop's is March 3, Snap's is March 19 (and no, no post this year for her. I was too busy treating her like a princess for a whole week... seriously, when do they get old enough that this stops?) and Crackle's is today, April 1. Interestingly, they were all due March 24. Apparently Canada Day is HAWT at my house. :)

April 1 is a shitty day to have a baby. The two anesthetists on call were busy and they had to call someone in for my surprise c-section (surprise! your baby's enormous head is stuck in your pelvis!) The guy they called in thought it was an April Fools joke and didn't come. They had to call him again, half an hour later. Just for that, April Fools Day is dead to me. So is the On Notice generator I was going to use for a picture here. Because it's actually dead. To me and apparently everyone else.

Anyway, it's his 6th birthday. A bittersweet day in the home of a BC kid with autism. One one hand, birthday! Cake! Toys! Treats! Gets to do whatever he wants (within reason)! On the other hand, the autism funding drops to $6000 from $22,000 and the OMG what the hell are we going to do?! feeling sets in. But I will worry about that tomorrow. Today, I celebrate my middle child.

Crackle is cute. Adorably cute. He's got blond curls, perfect blue eyes and the grubby hands of a six year old who couldn't care less about dirt. He's simultaneously easy and hard to please. He likes to play with jigsaw puzzles and blocks, but a deck of cards or a new package of socks is the best thing EVER. Socks are to be stacked, not worn. He stacks them up carefully, touching each one gently with the back of his hand after it's on the stack. When the stack falls, he starts over. Shirts will also do. We had to strap his bureau drawers closed because he pulls all his clothes out to stack them. And giving him a few isn't enough. He tries to take his brother's shirt right off his body. It's funny, but Pop isn't amused. Crackle loves jumping on the trampoline (and remind me to tell the story of setting up the trampoline sometime). He'll do it alone, but he loves it if an adult comes and jumps with him. Any adult will do. Including the Mormon missionaries that come by sometimes.

He's also simultaneously loud and quiet. He's got a loud, high-pitched vocal stim that makes me want to wear earphones. But that's pretty much the only sound he makes. Other than uncontrollable laughter, that is. And that's hilarious to watch, but a little scary too.

He's got no language yet. No sign. No picture exchange. Not enough attention span to learn either of them. That he's as happy as he is, is a testament to his Mom's psychic ability his resilience and stubbornness. He figures out how to get what he wants, and he tells me by taking me to what he wants and showing me. The figuring it out thing is scary. Because it's damn hard to child-proof a house from a clever 6 year old with the impulse control and danger awareness of a toddler. Yesterday, barreling down the highway in the Loser Cruiser, my son figured out how to get out of his seatbelt. EEP.

So today I'm making him a cake, and I'm going to buy him a big bag of marbles and set up his Marble Works for him. We'll go outside a million times. I'll get him so potato chips. I'll make him some salmon and roasted cauliflower with nutmeg for supper. And I'll sit with him and stack cards, socks and shirts for as long as he likes. Happy Birthday, my April Fools Baby.