So your child was diagnosed with autism: Tips for navigating the internet

Oh, hello! For those of you who don't know me, I'm Jill, and my kid, who I call Child 1, is autistic. He's 12 now and he received his first diagnosis in May 2004. I've also been on the internet since 1993, ever since America Online spent all their time mailing out those floppy disks that everybody ended up using as coasters. I thought I would take my years of combined experiences and write up a post giving my advice to the parent whose child is recently diagnosed with autism. Because, you see, it's ugly out there. It's messy and it's no fun and if you're new to this you could very easily be freaked out enough to just grab your kid and run and hide; that's probably what I would have done. So let me give you some advice that you might be able to use along the way.

1. Don't take my advice.

Wait. What? Don't take… huh???

See, you have to think about The Internet like a great big beach, full of individual grains of sand, and your brain like the head of a pin. Each of those grains is one person's opinion, or one person's experience, or one organization's mission statement, or one Facebook page's viewpoint, and your job now is to wade through that beach and find the 10 or so grains of sand that will fit on the head of your pin. The only way to find those 10 grains is to dip yourself into the entire beach and go through all the individual grains; taking what you need, leaving behind what you don't. Many of them will not work for you, many of them will cause you to run, screaming for the hills, but some of them will be the ones that speak to you and you need to find those. So don't just take one person's advice and leave it at that, you have to read all the advice, and even if you end up back at that first place that you started, at least you got there on your own, fully armed with knowledge. So the next few months your job is to get in front of your computer and start reading, and read it all, even the most batshit, explosively crazy stuff: you've got to read it all. Take notes, remember the places you like, remember the places you don't like, and then come out the other side with your 10 grains of sand.

2. There is no one "right" way to think

There is no instruction manual here. Every person, every child, is an individual with individual needs and experiences. What works for one person might be the most horrible thing for another, but you won't know what works for you until you figure out what all your options are. ABA was awesome for my kid, but that doesn't automatically mean that ABA is awesome in general: it just means that it was awesome for my kid. Anybody who makes blanket statements about what is good and what is bad for a child with autism, when these issues are not black and white, is not somebody who I believe to be helpful.

Additionally, there are a lot of people out there who may tell you that what you think is wrong, or how you feel is hurtful, and they feel justified in telling you this because they know more about this stuff than you do, and it's probably true that they do know more than you do: about autism. But they don't know you, they don't know your experience and more importantly, they don't know your kid. Remember this as you wade through that beach, because it's the most important thing you can hold in your mind right now: You are an expert on your own child. Nobody else knows your kid like you do, particularly an internet person who has never met them. Nobody else can claim that they know what is best for your child, only you can claim that.

Another thing to remember is not to be swayed by what seems like popularity. Just because somebody has written some books, has been doing this since May 2004, has fancy letters after their name, or is a Facebook page has a lot of likes, it doesn't mean that they're any better than anybody else. First of all, Facebook likes can be easily bought, so a page with high numbers isn't an automatic brand of respectability. Respect has to be earned, it can't just be bought, so if somebody is telling you what to think or feel, rather than helping you to learn, their numbes are meaningless. That's not helping, that's preaching, and you don't need that right now.

3. Trust your instincts

As you sludge through the sand, don't be afraid to stop and ask questions, because you need to meet people right now. There are lots of good people and good places out there who have the information and experience that can help support you and inform your opinion, and these are the people who are going to help get you through this. And there are also lots of bad ones. For example, if you find yourself in the middle of an argument that doesn't seem to have anything to do with you, or people are calling you names for no reason that you can tell, or if you're suddenly having to defend your parenting, or are saying things like "but, that's not even what I said…" RUN. RUN LIKE THE WIND. You've got an entire beach you need to get through, you don't have time to spend defending yourself against things you never even said, or having to repeatedly insist that you actually do love your child, because what the hell kind of crazy talk is that?? Know that everybody brings their own baggage to the table, and because their baggage has nothing to do with you, you have no obligation to spend your time fighting about it. It doesn't matter the horrible thing somebody says to you: it's not about you, it's about them. If it feels wrong to you, then it is wrong for you, so just cut your losses, delete your comments, and get the hell out. The next place you land will be better.

4. Stay away from reddit

Just trust me on this one. Reddit is not for you.

5. Don't let one bad apple ruin an entire viewpoint

Let's say you ask a question about possibly spacing out vaccines and suddenly you've got this person calling you a murderer and blaming you for all those kids that have died of pertussis in California. First of all, see #3 and get the hell out, but more importantly, don't let that one crazy person alter your viewpoint about vaccines in general. That person doesn't represent the group, they only represent themselves. It doesn't mean that all people who support vaccines are nutjob crazies, it just means that one person is. You can ask your question somewhere else and probably get a reasonable, informative answer, and since you need answers, discounting an entire viewpoint because of just one person might leave you with an uninformed opinion. Try again, it will be better somewhere else.

6. Don't panic. But if you do panic, that's okay, too

This is a lot, I know. And you're possibly feeling overwhelmed. You just got this diagnosis for your kid and now you have to wade through a whole stupid beach just to find 10 stupid grains of sand? Are you kidding me?? Shut up, Jill! Yeah, I totally get that. This sucks. But I've been there, I got out the other end, and you'll get there, too. You will make your way; you will find your tribe. This will not break you, I promise. You love your child, that much is 100% fact, and it is that love that will help guide your way. Hold onto that and let it be your flashlight as you sift through the sand.

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You'll notice I haven't provided any links to places I think are good to read because I didn't want to advocate for any particular opinion here, but I'm happy to answer questions if anybody has them, so feel free to contact me at jillsmo@gmail.com or on Facebook here. I love hearing from you guys and I especially like providing guidance, so don't be afraid to contact me. I don't bite! Despite what you may have heard. 

But don't take my word for it, find out for yourself. What the hell do I know, anyway? I'm just one grain of sand. One itchy, sarcastic grain of sand.

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Skyping

(Oh my god, she posted twice in one day? What the hell is happening???? I DON'T EVEN KNOW WHO I AM ANYMORE. I figured I should just post it all at once, otherwise it would depart my brain forever, never to return. And this shit is important, too.)


I had a Skype conference call with a client earlier today. Skype calls are awesome because you don't need to shower AND you don't need to wear pants!

Unfortunately, though, since I was having this call from my office at home, it looked like this much of the time:

No pants, though.....

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Pilates

I've been working out a lot lately; doing a lot of cardio. And I was thinking I should maybe mix things up a bit, and from what I've read it's important to "strengthen the core," as it were; and I don't mean kegels. (I don't just mean kegels, anyway. AAAAAAAAAAAAnd release).

So what's good core strengthening exercise? Yoga, right? And pilates? I guess. But I'm kind of afraid to take one of those classes because the chances of me doing something stupid and looking like a complete fool are pretty high. I mean, the chances of those things happening are pretty high on a regular day, but get me on a big pilates ball? In front of people? There's just no way that can turn out well for me.

So I've decided to do the next best thing and just draw me doing pilates.

Boom. Core strengthened.


(Apparently I already had a tag labeled "this one is kind of dumb." Who knew?)

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Emily

Reposting on this, the shittiest of anniversaries. I miss you, cousin  

Thanksgiving 2012

I had a beautiful cousin, whose name was Emily, and she died last week. She was 36.

Do you know people who just seem to "get" things? I don't know if I'll explain this properly, but I'll try. Emily understood things. You would explain something, perhaps badly, and she would just understand. I could switch from serious to sarcastic in a second, and she was always right there with me, the whole time; playing along. You could talk with passion about something that meant a lot to you that you couldn't tell anybody else, and Emily would get it. And it wasn't like you just thought she understood, she could repeat back her understanding of your situation perfectly, and she would be right.

Emily was on the same wavelength as me, all the time; but Emily was on the same wavelength as everybody; all the time. She was bipolar, and I think she lived her life feeling not quite the same as everybody else. She was introspective. And analytical. And smart. And so, so funny. And I think it was this combination of things: her immense intelligence, and the way she felt about herself in the world, that made her as understanding as she was. I felt so comfortable around her, and honestly I don't feel that comfortable around people in real life, most of the time. She had a gift.

Her loss will be felt very very strongly in my house. She was my regular babysitter and was here often and she had this incredible connection with my children. She would spend hours playing Pokemon with Child 2 (after he insisted that he teach her how). She listened as he rambled on and and on and on about whatever was happening in his Minecraft world. She was fun, and she was funny, and he loved being around her.  I'll never forget that the last time she babysat Child 2 was jumping up and down saying "YAY! Emily will be here in 10 minutes!!"

But her connection with Child 1 was the most remarkable.

As a parent of a child with autism, one of my hopes is that I can help him find adults who can act as mentors. Adults who have an understanding of his world and who have experienced similar things, who can help guide him through his life. Emily was not autistic, but I think that she spent so much of her life feeling "different" from everybody else, that it allowed her to create such a beautiful bond with Child 1, who is also so "different." She would tirelessly take him on elevator rides, and to the various stores that he wanted to visit. They watched BART trains together, and she never had a need to ask "why does he like BART so much?" she just knew. He loves his trains, and she knew how it felt to love something. She would often mention how much she could relate to him and his quirks. She got it. 

I already miss her so much. We didn't even talk every day, it was about once a week or so, but I already feel her absence from my life so strongly. My children will miss her so much, and I don't know if they understand what death really means, but I grieve for the sadness they will feel as they begin to understand the reality of her being gone.

The last few months had been hard for her; she had been struggling. In my phone I have the last communication we had; a text message I had sent her. It says "I hope you're doing okay. If you ever want to come and just hang out here you are always always welcome. < 3 " I don't think I will ever delete it. I'm just so glad that the last thing I said to her was that she was loved and she was welcomed. She didn't respond, but I hope she knew that I meant it.

I don't think this makes a whole lot of sense, my writing is choppy and I apologize. I'm very sad, and I'm doing my best to explain how awesome she was. Emily would have understood.

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If you are so inclined, you may be interested in making a donation in her name (Emily Salzfass) to Depression and Bipolar Support Alliance.

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So, I hear blogging is dead now

I read an article recently, and my pals have been chatting, that blogging is dead. People don't blog anymore, apparently. I don't really know why, because I when I say I "read" an article, really what I mean is I saw the headline in my Facebook feed. Because I'm an American. But I guess comments are down and traffic is down and the conclusion is that blogging is dead?

I'd just like to point out that THIS blog has been dead for a while, so if the topic is about how blogging is dead, the only natural conclusion is that I've created this Dead Blogging thing. Because I'm a trendsetter. I set trends. Particularly if said trends involve not doing something, or doing something wrong, or looking like an idiot while doing something, or perhaps falling down and hurting yourself in the process of doing something. Because I'm trendy.

So, if anybody was wondering Whatever Happened to Jill's Blog? The blog is dead because blogging is dead.

And trends.

Also irony.

Huh?

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