autiZAM! My Top Ten Favorite Search Terms.

I’ve been away from the blog again. Our dear cat died last week, so we’ve been pretty sad around here. I had hoped to post a little story about her by now but, again….the sad thing. Nevertheless, one is in the works, safely tucked away in my “Drafts” folder. In the meantime, I thought I’d blog a little something to cheer myself up – and maybe you, too!

 

Sweet Dahlia. We'll miss you.

 

If you know me, then you know how I love my statistics. Statistics in general are pretty cool – ever notice how you can twist ‘em/tweak ‘em/bend ‘em to say whatever you want? – but today I’m talking about my blog statistics. There’s a secret page over here that tells me how many people are reading the blog, what countries they’re from (what’s up Slovenia!)….and so on. My favorite bit of information, though, has to be the search terms.

I’m always interested in how people find their way to my blog. Many of the search terms are what you might expect (autism, autism awareness, gluten-free, etc.) – but every other day or so I’ll find something really funny that makes its way onto the list, so I’m going to share them with you now. Of course it turns out that a few of them aren’t so much funny as they are “exotic” and/or “unfamiliar”….so I learned a thing or two while writing this post. Thanks for making me smile, everyone, and I hope you find what you’re looking for.

 

1.   “autizam”

This is the search term that started it all. And by “all”, I mean this Top Ten list. I love it because, when I see it, I imagine in one of those spiky speech bubbles from an old superhero comic. And, as you might have guessed – this is one of those terms that is not at all uncommon in other parts of the world. Upon Googling the term myself, I discovered that this is a perfectly acceptable spelling variation, most often seen in places such as Croatia, Serbia, and Bosnia and Herzegovina. Pretty cool! You learn something new every day. But when I see the word, it still looks like this in my head:

 

 

2.   “I always knew he was autistic”

Hmm. I wonder about this one. Were these the searcher’s own words? Was the searcher annoyed at someone having spoken these words to him or her? I can relate. One of the most annoying things ever said to me about my son’s autism was just that - “I always knew he was autistic”. Oh you did, did you? Shut up. Not you, reader! I’m talking to the lady in the supermarket that hadn’t seen us in a few years…

 

3.   “autism paleo”

First of all, I’m proud of you. While I don’t like to attach a “label” to our eating style, this is pretty much where we’re at – and I feel like we’re finally on to something. Not just for autism, either. I think the omission of grains and dairy (okay, *most* dairy!) is beneficial to just about everyone. We’ve definitely been happy with the way things are going. Although it took us a while to get here. The funny thing is that I have a Master’s degree in Anthropology (with my background being predominantly in physical anthro), and I feel like I should have drawn my own dietary conclusions years ago. Duh. What can I say? This is America. I’ve been brainwashed by the Whole Grains Council.

Anyway, here are a few sites I love to get you started. You’ll have to spend a bit more time cooking, of course, but when you really start getting into it, I think you’ll find that you’re not missing a thing.

Elana’s Pantry

PaleOMG

Against All Grain

 

4.   “waldorf nine year kill myself”

Whoa! That sounds bad. It’s also so absurdly specific that I think the searcher must have read an earlier post of mine, and was trying to locate it again. You can read the original post here.

 

5.   “hug box autism”

I really thought this was someone being adorable. And, later, a handful of other people being adorable. I sincerely did not know that the Hug Box is a therapeutic device invented by Temple Grandin herself! See – I’m still learning, too. You can purchase one of these from a company called Therafin. If I may take the liberty of sparing you some sticker shock should you decide to visit the site – this device costs $4525, plus shipping. Ouch! But if it helps your child, well…we do what we have to do. And maybe you’re one of those lucky few with a generous insurance company…!

 

The Hug Box! aka "Squeeze Machine"...

 

6.   “autism waldorf”

Our son attended a Waldorf-inspired charter school from first grade until the middle of third grade. It was awesome. Were it not for the fact that his teacher basically checked out and gave up on him last year, we’d still have him there today. If you’re considering a Waldorf education for your autistic child, I strongly recommend it. Especially early on. Lots of gentle sensory input. Lots of art, music…no computers, no plastic. Knd of meant to educate children in accordance with their natural stages of development. It’s just so nurturing. Don’t be discouraged by those who will roll their eyes and say “Well you know they don’t teach math or science…”. These people are stupid. Of course they teach math and science. It’s still *school*. Don’t be afraid to follow your own drummer. Give it a try.

 

7.   “autism saying wow”

Indeed. Autism. Lots of  “WOW” moments. Some good. Some bad. Some, just……..WOW. You know what I’m talking about.

 

8.   “autism doesn’t define me”

Nor should it. It’s something we live with. Sometimes struggle with. It’s something we hope and pray that our children won’t struggle with as much in adulthood. It’s also something that makes our children creative, quirky, insightful observers that have a lot to teach us. Autism is different, to be sure – but it can be amazing.

 

9.   “autistic child healthy pancakes”

I love this! Access to healthy pancakes is a basic human right. Please visit the links posted above in #3 for some ideas – but here’s one to get you started.

 

Pancakes made with almond flour. If you've never cooked with almond flour....oh my goodness. You're going to LOVE it.

 

10. “autism everyone happy”

Who are you, searcher of this phrase? I wonder. Are you a cockeyed optimist? Are you someone that was having a rough day, and needed some encouragement? I may never know. But I hope that you found something when you came to me that day. I’m a person who has gotten through life largely relying on my sense of humor. I never sugarcoat things, but I think that I do try to approach our tough times with humor, and maybe a little grace. Autism has kicked my ass from time to time, but my god – the in-between times can be so amazing that all the struggles seem worth it. It’s like enduring a cold, gloomy winter – and just when you think you can’t take anymore, there’s your spring. And you feel alive again, refreshed, like you can take on the world. Like most things in life, this autism thing is cyclical in a lot of ways. At least it has been for us. There are periods of progress, periods of regression, depression, joy…..and though it’s a tired old cliche – it’s very much like a roller coaster ride. It’s a wild range of emotions and experiences. You’re scared, you’re exhilarated, a little queasy at times….but you close your eyes and hold on tight. This is life. This is love. And at the end of the day – you’re happy.

 

04/16

You aware yet?

Well it’s World Autism Awareness Day again. It’s that time of year when folks are lighting it up blue, getting tattoos, and bragging about their children. It’s hard for me to believe that everyone isn’t already “aware” of autism, but I still find that we struggle to impart wisdom and knowledge to people who interact with our child – and it’s often the people you wouldn’t expect to be so in the dark about things. It’s the teacher who gave up on our son the day his diagnosis was official. It’s the new psychologist we saw last month who likened autism to fetal alcohol syndrome (I’m not even kidding). It’s the rude ladies in the supermarket that give you the dirty looks because your rather tall nine-year-old is dissolving into tears because the faces on the cereal boxes are looking at him…..

Whatever. You’re here, and you’re reading this – so I know you’re aware. Or at the very least, I know you’re trying, and that speaks volumes about you. I thought I’d share a few links today to resources and sites that we’ve found helpful over the last couple of years.

Autism Speaks

The organization that started it all. Maybe. I don’t know. But most everyone is familiar with Autism Speaks. Their website abounds with resources for families living with autism, and is a great jumping-off point if you’re just getting started. It seems there’s a bit of controversy concerning the way Autism Speaks manages their money, but you know what? I don’t really care. I don’t donate money. I don’t have any money to donate, and such criticisms mean little to me. At the end of the day, that big blue puzzle piece has gone a long way towards raising awareness and understanding, and that’s what’s important to me.

Generation Rescue

Generation Rescue is the rather controversial organization associated with Jenny McCarthy, and has served as sort of a counter to Autism Speaks. Look, I don’t play favorites, and Generation Rescue offers some great resources as well. They make a few recommendations that I wouldn’t touch with a ten foot pole, but I think it’s important to acquire as much knowledge as possible in order to make informed decisions. It is your responsibility – to your child, to yourself. You’re all captains of your own ships, people.

Autism Society

The nation’s leading grassroots autism organization, the Autism Society has chapters all over the country, with various events and ways to get involved and get connected. Can’t find a chapter in your area? Find out how to start one!

Autism Science Foundation

I don’t spend too much time here, but when feel like checking up on the latest in autism research, it’s a pretty good site to visit.

AutismWeb

This is a pretty simple little website, good if you’re just getting started. Somewhat less intimidating than the bigger sites, and links out to other resources related to therapies, diet, etc.

My Autism Team

I want to love this site. And I kind of do, but I think the usefulness of My Autism Team depends largely upon where you live. It’s sort of a matchmaking site for families living with autism. You sign up (for free, of  course!), create a profile, and start looking for people to connect with. It’s a fantastic resource, assuming that you don’t live in an area where other members haven’t logged in in several months. Which I do. *sniff*

AutismWow

Hey that’s me! You’re reading the blog, now join us on Facebook. Don’t face the autism journey alone. Come “Like” us. We’ll talk.

 

 

We’ve also been messing around with food lately, which is a lot of fun. We are totally gluten-free, and about 90% casein-free. While I’m coming up with some of my own recipe (to be shared at a later date!), here are some food pages to inspire you. You will spend a bit more time cooking, but I have to say that going gluten-free has not been nearly as bad as it sounds. In fact, it’s been pretty awesome. And yummy. It hasn’t been long enough yet for me to speak to its effects on Javier’s autism symptoms – but since we’ve stopped eating wheat, my husband is sleeping through the night again, and I’ve lost a few pounds. Certainly doesn’t hurt to give it a try! So get cookin’.

PaleOMG                                                      Gluten Free Goddess

Against All Grain                                       All Natural Mom

PaleoKids                                                    Paleo Plan

Gluten Free Girl                                        Cooking With Autism

Okay everyone – that’s it for me today! Hug your little ones (or your big kids!), and have a very happy World Autism Awareness Day…..

Talkin’ about food. Again.

Seriously, I promise I’m not turning this into a food blog – but lately we’ve really been putting a lot of effort into eating gluten-free (and mostly casein-free, but that has admittedly been more circumstantial than intentional), so for the time being, that’s what autism looks like at our house. Plus we’ve gone from struggling to find Javier social opportunities, to having something for him to do almost every day of the week, in a pretty short amount of time – which is awesome! But tiring. Leaving me little energy left over for blogging. And so here I am, feeling the need to stay current, but not wanting to whine too much….So I’m sharing a few more recipes, sites, and resources we’ve been loving lately. I hope you’ll find something you can use here – and love! – so please enjoy.

So I think when you’ve made the decision to go GFCF, you spend a lot of time thinking about all the things you can’t have. I know I did. And this is wrong. Like most people, we started out eating pretty similarly to how we were eating before, but with substitutions. Swapping out regular pasta for gluten-free pasta, regular bread for gluten-free stuff, and…well you get the idea. Basically you’re still stuck on the same packaged crap from the supermarket that none of us should be eating anyway – only now it comes with a bigger price tag. So I decided to take it a step further, and announced that we would be giving up all grains. I know, it may sounds drastic – and it’s a big commitment, so don’t do it all at once – but since taking the plunge, I really feel like we’re on to something. I have been spending a bit more at the store, but since we’ve given up beer (made from grains!), the expense has kind of evened out.

This weekend, I made this delicious Apple Spice Coffee Cake from Against All Grain. Baked with almond flour, it was a huge success – which was encouraging, since only a few weeks ago we tried baking with coconut flour and weren’t “thrilled” with the results. Still plan to experiment in the future, but at this point – almond flour is definitely the way to go! For sweets, anyway. And you need your sweets.

Against All Grain - Apple Spice Coffee Cake

Speaking of sweets, last week saw our first batch of sweet potato brownies. Yep, that’s what I said. Sweet Potato Brownies, recipe courtesy of PaleOMG, which happens to be one of my new favorite sites. Don’t be intimidated – the woman who writes this blog is exceptionally fit! But the blog is written with a very laid-back style. No preachiness here. Highly recommend. This recipe calls for only a few tablespoons of coconut flour – but don’t worry, this is not the recipe with the “questionable” outcome that I mentioned before.

PaleOMG's Sweet Potato Brownies. Yum!

Got a crock pot? Because we also tried this recipe from PaleOMG – Honey Ginger Apple Shredded Pork. To be honest, I don’t love pork. Bacon, of course – but I just have no real appreciation for pork roast, pork loin. Well except for those spiral cut flame crafted hams that they put out around Easter. You know, with that crunchy brown sugar glaze that’s all crunchy and sticky and oh my god……well, you know what I’m talking about. I love those. But other pork, not so much. But the family did love this recipe – and it makes your house smell wonderful!

Honey Ginger Apple Shredded Pork - PaleOMG

So those are the big three that we really enjoyed this week. Other than that, it’s been a lot of experimentation and tinkering in the kitchen. I’m trying to pick out vegetables that I’ve let intimidate me in the past. Giant leafy chard-like greens are a new favorite. And we’ve discovered that if you’re not sure what to do with something, a little lemon juice and chopped-up bacon never seems to hurt.

Do you follow a gluten-free and/or casein-free diet? What foods are you loving lately?

Do you think St. Patrick was gluten-free?

Okay – so I’m not Irish. Not even a little. But I did attend catholic school, and grew up around lots of Irish people – so I know the basic plot. Still, I was surprised last year at age 35 when someone pinched me for the first time because I wasn’t wearing green. Who thought of that??

I’m from the east coast. We didn’t pinch each other on holidays. Instead, someone’s mother would invariably prepare a box full of sugary “Irish Potatoes” and send them to school to be shared with the class. True, they’re probably not even Irish – but hey! A tradition’s a tradition. They are all I really remember about St. Patrick’s Day as a kid, and they’re the only thing I usually get around to making these days. My coworkers certainly seem to appreciate the effort.

Irish potatoes! Photo not mine - it's late, and I'm tired.

You can Google this wonderful little confection and turn up a handful of variations, but if you want to make them my way, here’s how:

You’ll need

8oz of cream cheese (one package)

about 1/2 cup butter

two tablespoons of vanilla extract

4 cups confectioner’s sugar (I just use the whole bag)

3-ish cups of shredded coconut (again, I just use the whole bag)

a few tablespoons of cinnamon for rolling

Cream together your butter and cream cheese. A stand mixer is wonderful for this recipe, but not necessary. Add in vanilla extract, then beat in sugar. Finally, stir in your coconut until well combined. This stuff is sticky, so I would stick it in the fridge and let it chill for at least 30 minutes. You’ll then roll the mixture into little balls (they’re quite rich, so a little goes along way); again, chill after rolling. After they’ve firmed up a bit, roll them in cinnamon and you’re done! Take some to work with you – you don’t want to keep too many of these around the house.

Just in case you’re feeling more festive than I am, I wanted to share some recipes that I’ve come across this week. Most are gluten-free, since that’s how we’ve been eating lately. Enjoy!

Cauliflower Crust Pizza

The beautiful dish pictured above is a Cauliflower Crust Pizza with Pesto, Butternut Squash, and Spinach. Ohmigosh – seriously? Who ever thought of making a pizza crust out of cauliflower? Danielle at Against All Grain, that’s who! This is one of the entries in her St. Patty’s Day Recipe Roundup – and it’s definitely worth a look.

Gluten-free Irish Soda Bread from Gluten-Free Goddess.

I hear people talk a lot about Irish Soda Bread around this time of year. Are you one of those people? Then check out the recipe for a gluten-free version at Gluten-Free Goddess. She has a number of other delicious-looking recipes “inspired by Celtic tastes”…

PaleOMG Southwest Turkey Sliders over Spicy Avocado Slaw.

Okay so these aren’t “Irish” – but the slaw is green, and I’m currently obsessed with this blog. PaleOMG. If you’re not into the idea of “Paleo” eating – then just think of it as “extreme gluten-free”. Really great stuff to be found here.

Vegan Colcannon. Don't let the "vegan" fool you - you can totally add some sausage to this.

Finally, from Choosing Raw – this Colcannon dish looks pretty delicious! Potatoes, kale – what’s not to love? I may be inspired to get cooking this weekend after all…

Happy St. Patrick’s Day!

we do what we can…

You guys, I’m having kind of a rough week. But before I get into that, I have to wish a Happy Birthday! to Dr. Seuss. You’ve known him, you’ve loved him – and I just had to include the following quote because it’s so appropriate to our unique struggles. And probably to life, in general. When the universe throws a mountain in your way, try your best to knock it over with a smile and a quirky rhyme!

Happy Birthday, Dr. Seuss!

 

Really, though – I feel like I’ve been staring down a mountain all week. As autism parents, we are inherently strong – because we have to be – but I don’t mind telling you that there are some days when things seem to hit me extra hard. Things that I usually let roll right off my back can seem crushing. This time around, it was the thoughtlessness of a stranger that I made the mistake of reaching out to a few days ago. I know that I shouldn’t let another person’s words get me down so much – but when you’re in the position of having to teach your child to interact with the “neurotypicals”, I think it’s easy to become discouraged by people’s rudeness. I try not to be cynical, but sometimes I’m just like “Wow. People are so unkind; this is the society I’m shaping my son to belong to?” It makes me want to pack it all up and move to a cabin in the woods. But I don’t hunt. Or fish. And mosquitoes really annoy me……….but I’m getting off track here.

So here’s what happened. I belong to our local “Freecycle” community. If you’re unfamiliar with this – it’s actually pretty fantastic. It’s a way to get rid of household items (or anything, really) that you can’t bear to trash because you know that someone could still get some use out of them. So you post an offer to the message board, wait for a nice person to respond, place the item outside your door – and it just disappears. I was able to get rid of a number of unwieldy items that I probably couldn’t sell on Craigslist, but still couldn’t throw away…..and I’m getting off-topic again.

Anyway, earlier this week a woman posted an offer of some books about autism. Now if you’re reading this blog, the odds are that you’re looking for some connection to someone else like yourself, who understands what you’re going through because, hey – that’s what we do. And you have likely found it difficult to connect with others in your area. So you start off online. We all do it. Autism is isolating. I saw this woman, with her autism book post – and I took a chance. I responded to her message by asking whether she had a child with autism, because I did – and if she was interested in talking, that might be nice! I knew that such an email might come as a surprise, so I also made the point of telling her to ignore my message if she wasn’t interested. In fact, those were my exact words – “Feel free to ignore me”…

But she didn’t ignore me. She responded a few minutes later, and I happily clicked on the email. No, she didn’t have a child with autism. Rather, she has an autistic grandson who doesn’t live in the area. Bummer, I thought. Then, another message appeared in my inbox. “What could she have to tell me?” I wondered. Well, here’s what she said:

“Your behavior is completely inappropriate. I am a moderator and if others complain about you, I will remove you from the group”.

Ouch. Now perhaps you’re thinking that this is nothing to get upset about – but it just seemed unnecessarily mean to me, and my feelings were really hurt. I mean, she could have ignored me. She didn’t. I took a chance by reaching out, and she made the choice to be unkind. It made me wonder what kind of relationship she must have with the parents of her autistic grandchild. Guess I probably should have known from the fact that she was “disposing” of her books on autism – very telling!

Take that, lady.

I was startled, and I admit I cried a little. But it was late at night, and I was tired – so maybe that had something to do with it. I was also still kind of reeling from a conversation I’d had the day before about my son’s waiver services. Did I mention that we got picked for a waiver? It happened pretty quickly, so I was suprised! I dutifully filled out our return paperwork, and now it’s more of the waiting game. Now, when we embarked on the journey of the waiver application process, I was basically under the impression that once we were selected, that there would be funding available to pay for other kinds of disability services that insurance doesn’t cover. And for the most part, this is true. But what I wasn’t aware of was how many more people would be getting involved in our lives along the way.

This week, one of the people in charge at Javier’s rec center asked me how the waiver thing was going. I told her that we’d sent back our paperwork and that we were just waiting for our appointment with a care coordinator. She asked me if we’d had our interviews yet. “Interviews?” I asked. She told me that the next step would be for me to compile a list of people not related to us that know Javier, and could speak to his needs. I found myself getting upset – at first because we just really don’t have anyone that knows us well. His therapist, maybe? That could work. But then I started to become uncomfortable at the thought that so many people are about to become involved in our lives. Care coordinators, therapists, interviews, home visits – do we want this? Does Javier really need this?? How much do I want the state, the government, to be a part of my child’s life? I just don’t know. I’m feeling overwhelmed by it all….

Thank you, unknown creator of this lovely piece. I'm trying!

So here’s where I’m at. Doing what I can, with what I have, where I am. I guess it’s the best that anyone can do.

 

 

 

 

 

 

 

 

the things people say…

If you follow the autism community on Facebook, then you have no doubt seen this video bouncing around over the last few weeks -

If you haven’t, I highly recommend it. It’s funny, in a gallows sort of way – and you may even be able to relate to it. In any event, it got me thinking about some of the things that people have said to me over the years regarding Javier. Here’s a list of my “Top Ten” favorites – and please feel free to comment with your own!

10. “That must be so hard.”

This one is pretty common. I hear it a lot, and you probably have too. It’s not offensive, as the speaker is usually well-meaning – but it is annoying. I try to smile and accept it as an awkward compliment. Yes, it is hard much of the time, but Javier is my only child, and this is all I’ve ever known. Anyway, my entire life has been one trial after another of some sort so, to be honest, I’m not really familiar with easy.

9. “Can’t you just tell him not to…?”

The first time I heard this was when Javier was around 3, and we were at the airport. This was long before his diagnosis, but well into his complete and utter lack of stranger awareness. Javier was so overly-friendly, he would approach and try to hug anyone that made eye contact with him. (In fact, this was a key reason that I did not suspect autism early on – autistic kids don’t hug people, right?) Anyway, he approached a middle-aged woman at the airport who gave me a very peculiar look when he repeatedly said “Hello”. I explained that we were still working on getting him not to talk to strangers. She responded by saying to me, stupidly, “Well can’t you just tell him not to do it?”

I’m serious. I didn’t know what to say. I wanted to scream at her: “YOU MEAN THAT’S ALL I HAVE TO DO??” Idiot.

8. “I could never do what you do.”

Well thanks. I think. Like I said, Javier is the only child I’ve ever had, ever known so, you know – I’m just doing what I do. I love him. But thank you. I think. You’d do it if it was your child. I hope.

7. “He doesn’t seem that bad to me.”

I know, right? To be fair, this usually comes from people that have no knowledge of autism, but *think* they do – and proceed to compare it to their own ADD/ADHD/whatever they think was “wrong” with them as children. A prime example of this individual is my old boss. It never failed – every time he saw my son, he would always remark “You know I really don’t think he’s that bad. When I was a kid with ADD…” and so on. The first time he said something like this, I tried explaining that Javier is usually great around adults; it’s when he’s around other children that his issues are really apparent. But after the third, fourth, tenth time….I realized the conversation wasn’t really about my son. So I learned to ignore it.

6. “Do you have someone you can talk to?”

This question is often asked by someone who is themself fragile, and whom I can only guess believes that if your child is different, then you must be in desperate need of therapy. Now, I have spoken to other parents who have benefitted from therapy, so I’m not knocking it. But if you know me, then you well know that I am not a person who could spend 30 minutes in an office discussing my problems with a stranger. Anyway I’ve always been extremely self-aware, and I enjoy learning about myself, by myself. That’s just me. So thanks, but I’m doing okay.

5. “That must be so hard.”

Number 10 is also number 5 because, really – it just happens that often. Friends, family members, the occasional stranger in the supermarket…..you know what I’m talking about. What’s really hard is having to listen to people telling me how hard it must be.

4. “Are you sure it’s autism? Maybe he’s just shy.”

Yes, I am sure. And no, he’s quite the opposite of shy. Which is a big part of the problem. No concept of personal space, no fear of strangers, and so on. Definitely not shy. (Actually, he is finally growing wary of strangers – but he’s 9. It has taken a heck of a long time.)

3. “He doesn’t understand…”

Oh yes he does. So much more than you know. I think that because our autistic children do not respond in the way that people want them to, it becomes easy to dismiss them as “not understanding”. Sadly, this phrase was uttered most often by his last teacher, just before I finally gave up on her and took him out of school. She was, by far, our biggest disappointment. I also heard this from Javier’s OT. She’s not our OT any more. When you point your finger at my son, that’s three fingers pointing back at you. Just sayin’.

2. “I always knew he was on the spectrum.”

This one really hurts me. I have heard this comment a handful of times over the last year, usually when I run into someone that I haven’t seen in a while. Most recently, it was another mom from Javier’s preschool, and a former soccer coach who is also a teacher. We’ll be catching up on life’s events and, when I get to the part about Javier’s autism, there it is. “I always knew he was on the spectrum…”

Really? Really?? Because no one ever said anything to ME. This is earth-shattering news. I spend so much time wondering if Javier would be farther ahead now, had we recognized his autism earlier and gotten him early intervention. I try to let it go, but sometimes it nags at me. I’ll never know. But depending on the mood I am in, I am usually angry and/or hurt when someone now tells me that they always knew my child was autistic. That observation may have helped us. I have to be honest – if I ever see a child that I suspect of having autism, I wouldn’t hesitate to express it.

1. “I don’t really believe in that.”

I was talking about my son one day last year to the guy that works at the liquor store. (Yep, we drink. Not heavily, of course – but once a week, beer makes it all better.) I was telling him about Javier’s autism. In a rather unexpected turn, he actually asked me what autism was! I didn’t mind being presented with the opportunity to share some knowledge, so I gave him a brief overview. He sort of cocked his head to the side and smiled in the way that you might smile when you suspect someone of lying to you. “Girrlll”, he started. “You know those doctors, they always want you to think something’s wrong with you.”

I didn’t disagree, but I prompted him to go on. “What do you mean?” I asked.

“They just want you think something’s wrong so you’ll take medication. I had my daughter at the doctor last week, and he said he wants ot put her on insulin ’cause she got…..oh, what’s that called?”

“Diabetes??” I asked.

“Yeah! That’s it. Diabetes. Anyway I was like whatever…I’m not putting her on medication.”

I was kind of incredulous. “Diabetes is serious!! You’d better do what the doctor says!” I practically shouted.

“Girrlll…” he smiled, shaking his head.

Anyway you get my point. You run into them less frequently in person, of course, and they’re usually not as nice as my liquor store guy. Autism isn’t real. It’s “bad parenting”, “bad diet”, “too much television”, and so on. What can you do? Ignorant people are everywhere.

So what are some of the stupidest/funniest/weirdest things people have said to you about autism?

the nine year change…

We had a pretty terrible morning at soccer yesterday.

For about the past month, Javier has been playing with an indoor league every Saturday. We found out about it very last minute – only about a day or so before the season started – so we were lucky to get in! It’s a special needs team run by one of the bigger soccer clubs in our area, and it’s been pretty fantastic, actually. Until yesterday.

I can’t pinpoint exactly what happened, but Javier’s mood was sort of “off” even before we arrived. Once we got to the field, he began sobbing, but assured me he still wanted to play. He made his way over to other children, and I found a place near the other parents. After a few minutes, I heard someone shouting from somewhere in the middle of the field:

“My mommy doesn’t love me! My mommy doesn’t love me!!”

I went out to him immediately to try to calm him down, and it seemed to work. A few tight hugs, a few deep breaths, and he seemed ready to go. I watched him out there, on the field, wandering from person to person – each time talking to someone for a moment, until he’d point and both would look over at me, followed by each adult patting him on the back in what was obviously an attempt to comfort him. “What could they be talking about?” I wondered. Well, friends – it seems that my beloved son was telling anyone who would listen that when we returned home later, “mommy is going to stick a knife in my tummy”…

Oh dear. Like most of you, I’m sure, I’ve become an expert at dealing with my child’s behaviors and emotions at home, but I have to be honest – sometimes this stuff really embarrasses me in public. I’m not saying that my son embarrasses me, mind you. Only that he states, quite emphatically, that his mother is going to kill him with a knife when he gets home. Oy. Thank goodness this is a special needs team, and his behavior didn’t raise the same alarm that it might have had it happened in, oh…say the supermarket! But did I mention that one of our local news stations just happened to be there yesterday filming a segment about the team? Yeah. I couldn’t make this stuff up. I prayed that they didn’t catch him on video or, if they did, that they would kindly edit that part out. But it hasn’t aired yet – so I’ll let you know what happened after I watch the 5 o’clock news…

Example of third grader's painting according to Waldorf curriculum. This will make sense in a minute.

So it was back around October when my son first talked about dying. I was alarmed, to say the least. He was very upset about something that had happened one afternoon, and suddenly blurted out “Give me a knife so I can kill myself!” Horrified, I grabbed him, held him close.

“Javier!” I said. “Why would you say something like that??”

“I don’t know I don’t know!” he replied quickly, in that frenzied way of speaking that he only uses when he’s really upset. I was able to figure out that he’d been pretty shaken up earlier in the day when a bigger boy at the rec center he visits had squeezed him. I thought that perhaps he’d been really frightened, and this was his was of expressing that. Still, I’d never heard him use such words before, and it scared the hell out of me. It was like in that single, brief moment, I watched his childhood slip away. There he was, about to turn 9 in a few months, and though I still see him very much as a “little kid”, I couldn’t deny that he was changing right before my very eyes. Needless to say, we watched him like a hawk over the next several days – and hid any sharp objects in the house. He didn’t bring it up again.

A few days later, I shared what had happened over lunch with a friend of mine – who also happens to be the principal of the Waldorf-inspired school that Javier had been attending.

“How old is he again? Is he nine yet?” she asked me. I told her he’d be nine in January.

“Have you read about the nine year change?”

I hadn’t. She recommended a book called Encountering the Self that talks about this “nine year change”, when children start to recognize themselves as individuals, separate from their parents. It is also apparently the age when kids start to think about death, and perhaps first realize that life is fragile, and temporary.

It wasn’t something I’d ever thought about. I bought the book, read it, and felt better for doing so. It’s not necessarily an “uplifting” book, but it did kind of help put things into perspective for me. I guess there does come the time in ever child’s life when that innocence starts to dissipate; but with an autistic child, I think it’s more difficult to recognize – and harder to see it go. My son is 9, and tall for his age, and while many of things he says and does are so much younger than his chronological age, I know now that in many other ways, he’s changing just like any neurotypical kid his age. It is bittersweet, to say the least.

So I know that when Javier talks about death and dying now, that’s not really what he’s talking about. I think he just knows that this is a very dramatic thing to say, and that when he’s very upset about something, it’s a quick way to express himself when he can’t find the words. I know it won’t last forever – though that doesn’t make me feel any better when announces to a field full of people that I’m going to kill him when he gets home. Poor kiddo. He just gets so overcome with emotion. I wish I could help him manage it, but I suppose that only comes with time and practice.

As we were leaving soccer yesterday, a young mother nervously approached me at the edge of the field. Her son had kind of aggressively hugged Javier at the beginning of practice, and she was concerned that his behavior may have been what upset my son. I assured her that that wasn’t it, and that Javier had been in a bit of a funk before we’d even gotten there. I was a bit sorry that she felt she might need to apologize for her child, but at the same time, it was one of those defining moments that let me know I’m certainly not alone in sometimes worrying about how others react to my child. We’re all in this together, after all…

you are what you eat…

I’ve been blogging little lately – but cooking a lot. If you have a child with autism, you have been subjected to all sorts of dietary recommendations. If you’re like me, then you’ve also spent a bit of time rolling your eyes about it all. There’s just so much to keep track of – eliminate this, add in that, GF/CF/WF/WTF…..?
Still, I take it all in. I watch people squabble back and forth about which diet is best. I’ve seen people become so angry and defensive about food that what began as a polite inquiry has dissolved into an online slapfest complete with name-calling and such. I am always interested to hear about what people have tried, what’s worked, what hasn’t – but in the end, it’s up to each one of us to make these decisions for ourselves.

I’ve spent the last several months tinkering with my family’s diet. I say “family” because I know there is no way in hell that we’d be able to sustain following separate diets based on our individual issues. I know that some people make this work – but I just don’t see it happening for us. Either we all do it, or no one does. Since I have been guilty of rolling my eyes every time I hear the phrase “gluten-free”, I knew we wouldn’t be starting there. I spent some time reading, and thinking about what our ultimate goal should be in reconfiguring our diet. Alleviating autism symptoms would be great, but we all know that that’s a crap shoot at best, so I decided to focus on overall health. After all, Javier is our only child, and I am in my early..mid…okay, late thirties, and I worry about his future. I need to be around for him, and the last few years have been so hectic that I’ve neglected myself almost entirely. This year I found that my cholesterol had crept up quite a bit – so I decided that we would all be starting on a plant-based diet. I’m calling it “plant based” because I don’t want to suggest that we’ve suddenly become strict vegans. It’s true that we rarely eat meat to begin with (more due to cost than anything), but I wanted to see if we could eliminate all animal products from our diet. And anyway Javier has begun asking questions about meat that remind me of my own younger days as an idealistic animal lover. Plant-based it would be.

I stumbled across a site called Plant Based Health. It’s the kind of site I love – very comprehensive, with plenty of recipes and resources – but what affected me the most were the various testimonials from the site’s handful of contributors. Each had gotten started on a plant-based diet for completely different reasons, but each with remarkable outcomes. The site also gave me the idea to put together a vegan cheesesteak (hey, we’re from Philly!). I posted about this on Facebook and received some surprisingly annoyed comments. You know, along the lines of “Well if you’re trying so hard to be a vegan, then why do you have to eat ‘fake’ meat and cheese?”…I tried to explain that I wasn’t trying to find vegetarian substitutes for animal products; after all, we only eat cheesesteaks about twice a year anyway. The point was that I felt if we knew that we were able to recreate “junk food” when we really craved it, then our dietary overhaul wouldn’t seem like such a sacrifice.

So back to the cheesesteaks. I used thinly-sliced seitan and shredded Daiya soy cheese. In case you don’t know, “seitan” is pretty much straight-up gluten. A good test, I thought, for its effect on Javier’s autism symptoms. If gluten was going to give us a problem, then it would be after eating these sandwiches! Of course it had no effect, and everyone loved them. We were pleased with our first deliberately-vegan meal.

In the week or so that followed, I prepared meals almost entirely from recipes borrowed from my new favorite food blog, All-American Vegetarian. If you need inspiration to start eating healthier, this is the place to find it. The author posts lots of recipes with bright, vibrant photos – something very important to me! Here’s an example from her recipe for Artichoke Heart and Sundried-Tomato Pasta Salad…which was a big hit at out house!

When you have this many colors on your plate, you're doing it right.

Colorful photos depict each meal preparation from beginning to end – and the recipes are super easy and affordable. She’s not gluten-free, but most of the recipes I’ve looked at could easily be tweaked to make them so…

The finished product!

Did I tell you about the cheesesteaks? I did? Okay – but I didn’t tell you this part, and you have to promise not to laugh. I made them again last week, and afterwards, I felt really sick. Not stomach-sick; rather, I felt unwell all over my body in a way I can’t quite explain. It suddenly hit me – “Could I have a sensitivity to gluten??”  Could all of my eye rolls and exasperated sighs be coming back to bite me in the ass? I prayed not. Like I said – I had rolled my eyes over gluten a lot. But it did get me thinking. About my son, now myself…..and what about my husband, who developed asthma as an adult? His asthma came about shortly after we met, and he’d been in the US a little over 3 years (he’s from Mexico). Curious, I asked him. “Did you eat much wheat when you were in Mexico?”

He said that his mother did sometimes make flour tortillas. But when I asked him how often, he said it had only been about twice a month. So he essentially went from eating *no* wheat, to eating something containing wheat every single day. Then asthma. Coincidence? Maybe. But I think now we’re going to try wheat-free, so I’ll let you know how it goes. Besides – I really miss cheese….

So what are *you* eating?

just for fun….

So I often spend time browsing the internet for autism awareness materials that I can use. You’ve seen most of them – the puzzle piece, the ribbon, etc. But I’m betting you haven’t seen this little gem!

 

I recently shared this on my Facebook page for the second time because, well – it just tickles me! To be fair, the traits and behaviors that they’ve highlighted here are entirely accurate. What makes this poster a real find are those crazy graphics. My two personal favorites are May avoid eye contact (“Open your eyes! Wider, dammit!”) and Insistence on sameness (“Drink the soda. Drink it!”). A member of our Facebook community also noticed the Delorean in the depiction of No real fear of dangers. Obviously running out into traffic is dangerous – but perhaps they’re also warning about the hazards of time travel?

I’d love to hear what you see in these pictures. Which ones speak to you? Share your thoughts with us! 

 

 

huh. there really *is* an age gap…

This week I had a chance to read a post over at Autisable called “The Age Gap”. Here’s an excerpt:

“One of the most frustrating parts of raising a child on the spectrum for me is what I call the “age gap”. I have spoken about this before but it is something I struggle with everyday. I constantly have to remind  myself to look below the surface before I react to whatever is going on. 

Please keep in mind that I’m speaking only to the experience I’m having with Gavin. In the Lost and Tired family, Gavin it the best example of this phenomenon. Please don’t take this as a blanket statement about all Autistic persons. Everyone is different and so this may not apply to your situation. However, I will say that I have heard from many people who are dealing with the exact same issues. 

I wish there was some kind of magical truth mirror or something. This mirror would show a true reflection of who you are on the inside.

I think that many people aren’t aware of this age gap.. They aren’t aware that with kids like Gavin, looks can and will be decieving. You look at Gavin and you see a 11 year old boy throwing fit or melting down when he doesn’t get his way. However, there is quite so much more going on underneath the surface. While Gavin does have control over himself in many of these behavioral situations, this gap in age plays a huge role in his decision making process.

If you stuck Gavin in front of this special mirror or looked at him through a magic lens, you would see a small child not 11 year old boy. Gavin is emotionally stunted at about 2 or 3 years of age. His intelligence far surpasses that of a 11 year old boy but inside he is only 2 or 3 years old, emotionally.”

I have been aware of this phenomenon for some time, but never really thought about it in this way. Nevertheless, this was one of those instances where everything immediately clicked. “Why yes” I thought, “That’s exactly what it is – an age gap!”….

If you clicked on the link above to read Rob’s post, then you’re probably already caught up to this point. For those of us with high-functioning autistic children, in particular, this is a great perspective to keep in mind when we’re struggling to understand our kids. I feel like I have an infinite amount of patience with my son, but we do all have our days when exasperation gets the better of us and we wonder how much more we can handle. I always have his autism in mind when Javier has a meltdown. I know that he’s sensitive to stimuli that most of us are able to ignore, and I know there are times when it just all gets to be too much for him – but what I don’t usually stop to consider is that he’s younger in there than I think he is. I mean, he doesn’t look little any more. He’s about to turn nine, he’s tall for his age, and it’s easy to want to force him to tough it out when things are hard – that it’s the only way he’ll learn. I feel like I am sometimes caught between babying him a bit in an attempt to make him feel secure, and trying to let him handle certain things alone so that it might be easier the next time around. And then of course I feel guilty for just not knowing what the right thing is. I’m sure that’s true of all of us. It’s hard not to second-guess yourself when you’re worried about the lasting impact your words, actions, decisions will have on your child….

Of course it isn’t all bad. It’s true that it’s a struggle to carry the knowledge and experience, the appearance of a nine-year-old, with the emotions of a much younger child; but I’d be lying if I said I didn’t enjoy some of those moments when this age gap is so apparent. It’s in the childlike wonderment that hasn’t yet given way to cynicism; the quirky, innocent and oh-so-random questions and observations that you never quite expect. Like this afternoon, for example. We signed up Javier very last-minute for a special-needs soccer team in our area that we’d just found out about. He was out there playing today when, in the middle of the game, he abruptly stopped and made his way across the field to me with a rather purposeful stride. I knew something was up. Was he thirsty? Hungry? Injured? I stood up as he approached.

“Mommy?” he started.

“Yes?”

“Do penguins eat fish pancakes at the North Pole?”

I had to smile. I wondered what prompted him to think about penguins in the middle of his soccer game. I loved that he simply could not continue with the game until his question had been answered. He needed to know whether penguins eat fish pancakes at the North Pole, and he needed to know now.

“Well, Javier” I said. “You remember that penguins live at the South Pole, right?”

“Oh yeah! That’s right. That’s right. Do they eat fish pancakes at the South Pole?”

We had a quick discussion about how we didn’t think penguins had the proper equipment to make fish pancakes, but that they did in fact eat fish, and yes I think they feel cold but they enjoy huddling together to keep warm. He seemd satisfied, and ran back out onto the field, happily skipping and flapping, to rejoin his game. And I just sighed…