Earlier this month, I attended the Talking About Curing Autism (TACA) National Conference in Costa Mesa, California. There were many highlights, but for me, meeting Temple Grandin and hearing her speak was a dream come true. She is just as amazing as you'd think.
I learned so much from her speech and have already put some of her suggestions into action. Here are five of my favorites.
1. Always assume competence.
It was interesting that I had just written about this right before attending the conference. Just because people with autism can't communicate that they know or understand something, doesn't mean that they don't. Instead of assuming they can't, always assume that they can. Assuming they don't know things or can't do things makes them aggressive, and rightly so. Who wouldn't be in a pissy mood if everyone treated you like an idiot all day long?
Tosh is always surprising me with what he can do. Just one month ago he showed me he knew how to drive. I had no idea he had the hand-eye coordination and the ability to handle all of the stimulation. Our kids will surprise us with what they know and what they can do if we let them.
It was only 9 a.m. and I was already exhausted.
Our morning started out very well, until Tosh made a traumatic discovery.
His favorite toy, Buck from one of the Ice Age movies, was missing.
In retrospect, this morning's drama represented progress. Tosh didn't used to care about his toys. If one broke, he'd throw it in the trash without a care. Now that he's gained new cognitive functions and awareness, he's become attached to his toys.
That means when one is lost or broken, he gets upset like a neurotypical kid would. Except he has nonverbal autism, so it's more difficult.
And then you throw my sensory issues into the mix. Specifically, noise sensitivity. When Tosh gets so upset he can't communicate, he makes this high pitched whining noise that shuts down my ability to communicate. I mean, it literally scrambles my brain.
Oh, the irony of autism. Parents in the spectrum are in many ways the least equipped to deal with it. However, if we acknowledge and gain awareness of our own sensory issues, we can become the best parents our kids could possibly have because we understand them better than anyone else in the world.
When I become overstimulated by Tosh's meltdowns, I retreat to the next room alone to calm down. It only takes 15 to 30 seconds for me to refocus, and during that time, Tosh often calms down a little bit, too.
However, today it didn't work because ...
If you are looking for your new pumpkin obsession, you've come to the right place.
These mini pumpkin pies are AH-mazing! I mean, I feel like I should apologize to you now for how many you're going to eat in one day. But hey, pumpkin pie is a perfectly acceptable breakfast food in my opinion, and these are officially healthy.
They're grain-free, dairy-free, legal for keto, Whole30 and Specific Carbohydrate Diets. And if you substitute maple syrup for honey, they're even vegan.
Keto AND vegan? What kind of sorcery is this?
The good kind, baby. It's all good!
Some of you may live in places where it's already cold, but here in SoCal, it's going to be 90 this weekend. And that makes these mini pumpkin pies even better - you don't even have to bake them! They're no bake. No kidding!
Okay, that's enough of a sales pitch. Let's get to the recipe, shall we? I'm sure somebody at your house is waiting to lick those coconut whipped cream beaters!
Tosh has never taken an IQ test because they are designed to measure the intelligence of neurotypicals. What's the point? He already fails all other standardized tests because no effort is made to accommodate his inability to communicate like an NT.
I read recently that apraxia is more than just an inability to speak. It also prevents someone from correctly answering questions using any form of communication.
Wow, what an eye opener. That means because of Tosh's apraxia, there is no accurate way to measure his intelligence.
I'm in the process of setting up classroom observations to determine if the severe class is the correct placement for him and if not, what behaviors he would need to improve to move to the mild-mod class. I'm bringing along his ABA supervisor to see how they could support this transition. We're lucky that our district allows this. Many don't.
In fact, Tosh's teacher asked yesterday if I’d like to observe him mainstreaming as well. "Yes, of course," I answered. What a great idea and generous offer!
It's easy to feel sorry for yourself when you're exhausted, bruised and scared about your child's future. Besides, everybody else is doing it.
We are all painfully aware of the victimization of politics and our civic discourse as a whole. Dignity and courage used to be synonymous with American culture. Now, egged on by social media, we're all in a contest to see who is the most oppressed.
I read an interesting article about the social trend of American victimhood. It argued that attempts to claim status as the most victimized American fail because the unfortunate truth is that all Americans are victims. We are victims of a predatory way of life, malfunctioning institutions, corroded democracy, extreme capitalism and a broken social contract.
If you live by the law of attraction, this victimization echo chamber is making things worse. When you throw yourself a pity party, the universe says, "Ah! They like to be a victim. Better deliver more predators and tragedy."
Predatory institutions also benefit from a culture of victimhood, because it continually lowers the bar and allows what was once socially unacceptable behavior to become socially acceptable. We throw up our hands. "What can we do?"
I've been making these for a few years, long before Tosh and I went grain-free. Back then, I was just looking for a gluten free recipe and was intrigued by the idea of making cookies with mostly almond butter and eggs. No way they would taste anything like cookies.
These cookies are so good, everyone in your family will love them. I find them so addicting, I have to keep them in the freezer so I don't hork down the entire batch in one day.
Super easy to make and delicious. Try them this weekend!
Grain-free Tollhouse pan cookies
Adapted from Food Babe's Almond Butter Brownies
2 cups almond butter
1 tsp salt
1 tsp baking soda
3/4 cup honey
1 tsp vanilla
1 cup chocolate chips
Preheat oven to 350 degrees. Grease a 13x9 pan very well, especially the corners. You can also use parchment paper, but I prefer a greased pan.
Mix all ingredients except chocolate chips until smooth.
Fold in chocolate chips and pour batter into pan.
Bake until a deep golden brown, 25 to 30 minutes. Dark metal pans will bake faster.
Try your best to cool for 15 minutes before cutting.
NOTE: Using large chunk chocolate chips or mini chips change the texture of these cookies. Play around with them or use what your family prefers. You can also add 1/2 cup of cocoa powder and another 1/4 cup of honey to make these as brownies instead. If you also add chocolate chips to your brownies, you might want to skip adding more honey - unless you like your brownies extra sweet.
Most of my friends think I'm a pretty ballsy broad, but the truth is, I just have a wider comfort zone than most. I struggle with feelings of insecurity and self-doubt just like everybody else.
Today I did something bold I've never done before: colored my hair hot pink. In the age of mermaid hair, that probably doesn't seem like a big deal. However, as a GenXer rapidly approaching AARP eligibility, it was a huge step outside my comfort zone.
But it shouldn't have ever been that way.
When I was 13, I was obsessed with Michael Jackson. Thriller was, hands down, my favorite cassette tape of all time (still one of my favorites) and I spent long hours in my room memorizing every word and attempting all of MJ's famous dance moves.
Man, did I love his style. I loved it so much, I decided to copy it.
I convinced my mom to let me get the curliest perm available to a white kid living in rural Kansas, and confidently instructed my mom's stylist to cut it shorter on the sides like Michael's pompadour mullet. I was so excited to go to school and show off my new hairdo.
You all know how this story goes - it's a rite of passage most children experience at some point. Nobody thought I was cool. They made fun of me. Even the boy that I liked. Especially the boy that I liked.
That's when I learned a life lesson I've carried with me always. Everyone knows this one, too. We've all seen the meme:
'Shortly after the Great Hair Scandal of 83, a similar fashion incident occurred that involved bright, striped socks worn with matching culottes that I loved but nobody else did.
From that day forward, I vowed to temper my full personality. I had learned that once most people got to know me, they wouldn't like me.
Now, that doesn't mean I became a wallflower. Not at all. Instead, I found an 80s loophole that went something like this: Different is okay, as long as you're still sexy. It was the Madonna litmus test.
And to this day, that has been my personal style. Different, but not so different that boys didn't like me.
Regardless of your political opinion of the Brett Kavanaugh confirmation, if you attended high school in the 1980s, the stories that emerged from the hearing probably made you cringe. Boomers and millennials were stunned and offended, but we GenXers weren't. We went to those same parties every single weekend.
I've always been proud of the fact that as a GenX woman, I could choose any career I wanted, earn my own money, choose to marry and/or have children or not, and do a whole bunch of things my mother's generation couldn't do, but hoped their daughters would. And for the most part, we have.
But many of us were, and still are, caught somewhere in the middle between equality and compromising who we really are so the boys will like us. If we're not the sexy girl, we're the good wife.
It may seem like our millennial daughters and younger sisters have it better, but I'm not so sure. They heroically launched the #metoo movement, but they seem just as insecure and almost as willing to objectify themselves as we did.
I spend a lot of time doing everything I can to help Tosh become the best he can be, but for the past 18 months or so, I've spent more time focusing on myself than I ever have in my life. Not superficial self-improvement, but deep soul diving work. Ugly, Pandora's Box kind of stuff.
It's been the hardest but most rewarding work I've ever done. One lesson I've come to accept within the last couple of months is that I wish I hadn't felt embarrassed about my Michael Jackson hairdo. For almost two years I've wanted to color my hair something cool, like lavender or teal or magenta, but those memories of being laughed at in the lunch line always held me back.
That's why I took the plunge and colored my hair a color that boys my age don't generally like. (Although, a millennial woman I discussed this with today disagreed - "My mom does lots of things style-wise that I'm not brave enough to do, and she pulls plenty of dick," she said.)
I absolutely love my hair. And for the first time in 35 years, I don't give a fuck whether any boys do, too. Or any girls, for that matter. Some will. Some won't. The important thing here is that I no longer care.
As an autism parent, I'm 100% on board with accepting Tosh exactly the way he is. I want him to be able to pass freely through society and progress academically so he has options in life. But when it comes to hand flapping and playing with age inappropriate toys and everything that makes him different from neurotypicals, I couldn't care less.
Anybody who is lucky enough to know him and love him will do so because of who he truly is, not who he thinks others want him to be.
From this day forward, I vow to apply those same standards of acceptance to myself, too.
Obtaining an assistive communication device for your nonverbal child is very exciting. You feel like finally, your baby can communicate with the world.
But it doesn't happen overnight. It takes time for you and your child to learn how to use the device software and integrate it into your life. Because Proloquo2Go (P2G) and other systems are still relatively new, your child's special ed teacher and possibly even your school district's speech therapy team might not be well educated on how to teach your child to use it.
We've been blessed with an excellent private speech therapy clinic, school district technology specialists, a supportive teacher and aides, and a supportive ABA team that have worked together to help Tosh and me learn how to use P2G both inside and outside the classroom.
I'm no speech therapist, but I'd like to share what has worked for us.
First, it's important to customize the software for your child to match their skill level and program words that are meaningful to them. There are professionals who specialize in testing children with special needs to determine which devices are best for them and can provide initial training. Oftentimes, this is covered by insurance but you may need a referral from your speech therapist and/or primary care physician.
If your speech therapist or other therapy or education providers don't provide training or recommendations to specialists, click here for instructions on how to use the app. You can also search "Proloquo2Go" on YouTube to find videos posted by AssistiveWare, maker of the app, as well as videos parents have made.
1. Begin with food
The first buttons most families start customizing P2G is food. They use the app as a menu, prompting the child to tell mom or dad what they want for dinner, and progress to ordering for themselves in a restaurant. You can begin by allowing your child to just select a food, and once that has been mastered, show them where the "I" and "want" buttons are located. Show them how to say "I want pizza" and help them form the sentence each time they request food until they get into the habit of doing it automatically.
2. Beyond a menu
Once they have mastered food, it's time to move on to toys, places, friends and relatives. Customize these categories by adding your child's favorite things. This will expand your child's use of "I want" and improve their ability to navigate through the app. You can also add use of a new action verb like "go" or "play."
Add pictures as you have time. We have photos of all of his friends and relatives in the "people" file, but for privacy's sake, I'm showing our least customized screen here.
I knew we were onto something when Tosh found the "Target" button on his own and declared one afternoon, "I want go Target." Oh yes, sweet boy. I will gladly take you to Target for some bonding time.
The introduction of feelings is an opportunity to add another verb to your child's vocabulary, but tread lightly here. The first order of business is to get your child comfortable expressing their feelings verbally.
When someone is upset, autism or not, they are usually not very receptive to a grammar lesson. However, if your child is expressing that they feel happy, that may be a good opportunity to help them say "I feel happy" instead of just "happy" or "I want happy."
Tosh is still working on using the verb feel, and most often uses this screen to say "I want sorry sad" after he's been aggressive. He's very sensitive to the feelings of others and gets anxious if he hurts me, an aide or a therapist. This helps him move past the incident and discuss a better behavior choice next time.
If your child is in a special ed classroom, they are probably used to using a schedule with PECS. Tosh has been doing this for so long, he is comforted by knowing what he will be doing in a day, and in what order. Each morning we use P2G to review his daily schedule. As shown above, today he goes to school, then I pick him up at lunch time and we eat take out in the park. Then, we go to his private speech therapy clinic and then to ABA.
If we are counting down to a special event like a vacation, holiday or eagerly anticipated play date, we make use of the days of the week buttons as well. This requires a very long sequence of his schedule that can include today, tomorrow, Thursday, Friday and then Saturday, when the big day occurs. However, if your child is like many autistic children, they are obsessed with calendars and special events, so automating this process might save you a ton of time. Here's how to do it.
Once you "say" a sequence of events by selecting each button and then tapping the top section to say the entire sentence or sequence, P2G stores it in the "Recents" section. Teaching your child to access this feature will allow them to hear the sequence over and over (and over and over) again at their convenience. If your child has ever driven you mad by asking to review their schedule or calendar 100 times in a day, this feature will be a lifesaver.
It also allows you to see how much P2G is being used in the classroom and various therapies. If necessary, you can use this feature to keep your educators and therapy providers honest regarding how well they are supporting your child's use of an assistive device.
To access "Recents", select the four panel button at bottom left. That will bring up the "Tools Popup" screen. Select "Recents," which is the button with the clock icon.
On this screen you will find a history of everything your child has "said" with the device. It's important to note that to record a history, after you or your child selects all the buttons to form a sentence or sequence, they/you must tape the top section to "say" the entire sentence. If you don't complete this final step, it won't be recorded in the history.
Tosh uses this function quite a bit to save time so he doesn't have to hunt for each button again when he wants to repeat himself.
Let's quickly return to the Tools Popup screen. Notice the "Search" button with the magnifying glass icon. If you tap that, it brings up a keyboard into which you can type any button you can't find on your own. The software then shows you where the button is located, and you can select and move it somewhere more convenient if you'd like.
5. Reading and spelling
By the time you've implemented all of the P2G uses above, your child has probably already navigated through the entire app and is more familiar with all of the words than you or any of his teachers, aides or therapists. That means it's time to start using it as an academic learning tool.
This week, I'm creating a school page for Tosh, where his aide can program buttons with weekly sight words and words he is learning in reading comprehension. She has also taught Tosh how to access the keyboard function so he can use it to spell words. Here's how to find that.
You can access the keyboard by tapping on the keyboard icon on the bottom bar from any screen. A basic keyboard will appear. Tosh's aide also uses this to help decipher what he is trying to say if he can't find the appropriate button. Despite being nonverbal, he's pretty good at sounding out words - something we didn't realize until his aide began using the keyboard function.
(Yes, his aide is amazing, isn't she?)
Tosh is also learning how to write on paper, but let's be realistic: when was the last time you used a pencil? I think it's very important kids learn using digital tools, and thankfully, his teacher and aide agree.
If your child uses P2G, please share some ways you have implemented use of the device in the comments below. Other parents new to assistive devices will be very appreciative!
Heather Anderson is a blissfully happy autism mom and lover of life in Southern California who is on a mission to help autism parents rediscover their happy place.
Please join me on this beautiful autism journey. The Autism Oasis is a fun, supportive and educational community where your personal development is just as important as your children's. You are more than just a caregiver!