When your child is officially diagnosed with autism, you feel a lot of emotions.
You might feel relieved that you finally have a name for your child's lack of development.
You might even feel a bit vindicated that you were right and all those doctors and relatives who told you it wasn't autism were wrong.
But then the grief sets in.
There are many emotions that come with an autism diagnosis, but most of all, there is grief.
So much grief.
You refuse to accept that grief. You refuse to accept that your child will spend a lifetime suffering from a disorder that allegedly has no known cause.
Because of course autism has a cause. If it didn't, the rate wouldn't be increasing at an epidemic rate. This is more than bad luck, more than losing the genetic lotto.
This is fucking bullshit.
So you begin searching for a cure.
It's so alluring, that cure. Especially when your child has severe autism and suffers from chronic pain,...
Today we achieved a major milestone: Tosh watched a new movie all the way through, and only used his iPad once.
This has been a long time coming. We first took Tosh to the movies three years ago. At that time, he was five and if you have a moderate to severely autistic 5-year-old, you already know how that turned out. It didn't go well.
He kept running up and down our row and wanted to sit in the row in front of us. At one point, he crawled under the seats so he could get there.
This all happened during the previews. Mid-way through the animated short, we left. He just couldn't handle it.
But we didn't give up. I'm very passionate about the belief that everyone deserves to go out and experience the world. Whether it's going to the movies, out to eat at a restaurant or on vacation, kids and adults with autism are capable of far more than we realize.
They just need lots and lots and lots of practice.
It's a real conundrum: the only way to learn social skills is...
When your child has moderate to severe autism, it can be a struggle to feel like a normal family.
One of the easiest ways to overcome that struggle is to lean in to autism, and let it help create your own special family traditions.
We've been doing that for a few years, and this Father's Day, we hit it out of the park.
A couple of weeks ago, I told Tosh that Father's Day was coming up, and I wanted him to help me decide what we should get his dad for a present.
He thought about it for a few minutes and then proudly announced his decision using Proloquo2Go on his iPad: a tree.
"A tree?" I replied. "You want to give Dad a tree for his present?"
Yes, he confirmed. A tree.
Naturally, I had questions. A tree isn't a very practical gift, especially for an apartment dwelling dad. I asked Tosh if he could show me what kind of tree he had in mind. I turned it into a spelling lesson and used Google search to teach him how to spell tree.
Autism parenting pro tip: search engines are...
My son and I were eating breakfast out when I noticed the older couple in the next booth giving us the side eye.
“Oh God,” I thought to myself. “Here we go again.”
My son behaves well in restaurants for a kid with severe, nonverbal autism. He doesn’t scream or disrobe or run out of the booth like he used to.
But he does make autism noises. If you’re the parent of a nonverbal child, you know “the song of our people.”
It means he’s not as quiet as a neurotypical child, but he’s not loud enough to ruin a reasonable person’s meal, either.
Okay, yes, he does sometimes lay down in the booth at some point during the meal. And yes, he always has his iPad on. I mean, he uses it to communicate so of course he does.
But unless you know the full spectrum of autism behaviors, you wouldn’t know he’s very well behaved compared to his peers.
You wouldn’t know that if you were, say, the...
A controversial new mandatory vaccine law was passed by the California state senate recently, which means people are once again debating whether or not vaccines cause autism.
This blog post is not about that issue.
It's about an argument people make when they debate it.
It usually goes a little something like this:
Even if vaccines do cause autism, I'd rather take that risk than worry about my child catching the measles. After all, autism isn't fatal.
The way this argument trivializes autism is bad enough, as if it's merely a behavioral inconvenience, rather than the serious neurological disorder that it is.
But even worse, it's wrong.
Wrong. Wrong. Wrong.
Autism is absolutely fatal, and there is data to prove it.
According to an April 2017 study published in the American Journal of Public Health, and reported in Psychology Today, the average life expectancy in the United States for those with ASD is only 36 years old.
For the general population, it's 72.
When I first considered homeschooling Tosh, I was overwhelmed. I had visions in my head of Pinterest-worthy homeschool rooms, and there was no way I could live up to that.
Thankfully, I don't have to. Tosh is making great academic progress working mostly on our kitchen table, sometimes on the playroom floor and occasionally in bed. The book and supplies we're currently using are stacked (somewhat) neatly on a bookshelf and the rest is stored in a filing cabinet in my office.
This post is Part 2 of a series on how we homeschool with autism. You can reach Part 1 here.
These questions came from comments and messages on Instagram. If you have additional questions I didn't include, please post them below in the comments!
Q: Homeschool looks so overwhelming! I wouldn't even know where I would begin.
A: Neither did I! There is no way I could have come up with the curriculum and teaching methods myself. Some parents do, and my hat is tipped to them.
We homeschool through a charter school, which...
Recently on Instagram, I invited my followers to ask me anything about autism homeschooling. I received a hearty response with many questions from curious parents. One autism mom asked if I could archive the questions and responses for reference. I thought that was an excellent idea, so I'm putting them into my blog.
This first post will be about the whys, and next week I'll start sharing all of the hows.
Some autism parents are satisfied or even pleased with their local school district's special education programs. That's excellent! An appropriate education from your local public school is such a blessing.
But it's more than just a blessing for those lucky enough to get it.
It's a legal requirement.
In 1990, Congress passed The Individuals with Disabilities Education Act, or IDEA. This law mandates that special needs students receive an appropriate free public education in the least restrictive environment necessary to meet their needs.
The law was written to provide...
Something really amazing happened last Friday.
We went to a birthday party. There were a lot of kids, as you can see. (Tosh is top row right)
The party lasted three hours, he ate way too much candy and cookies and there was a bounce house and balloon fights. It was extremely stimulating.
And yet, for the first time ever, NOT ONCE did I hear somebody complain about his behavior. No Tosh pushed me, or Tosh took my toy, or Tosh won’t stop kissing me, or Tosh won't stop screaming.
He even sat still on a stone wall and waited patiently for the other kids to line up for a photo.
Now, you can see him sitting off by himself in the photo. He stayed in the jumper with the little siblings while the other second graders went inside to watch Mary Poppins Returns. He didn't always participate like his neurotypical peers.
But who cares? He did plenty of things with them and most importantly, he had a freaken blast without having to be corrected all afternoon.
I credit at least part of this...
Last year, on Tosh’s 7th birthday, I took him to Disney’s California Adventure. Although he does relatively well in highly stimulating environments like Chuck E. Cheese’s, and he’s been to smaller theme parks like Legoland, Disney takes things up a notch. I shouldn’t have worried. Disneyland parks are very accommodating to special needs children and it made all the difference.
Both Disneyland and California Adventure will flag your child’s ticket with a disability pass if you visit the information office located near the entrance of each park. Visit the park website for the exact location, or just ask any friendly, helpful employee at the entrance.
A disability pass gives you unlimited free Fast Passes, which minimizes wait times for rides. You can even get Fast Passes for rides after they’ve sold out, which was a blessing for us because the park was packed for Spring Break, and most rides were sold out within a couple of hours of our...
Kids with autism need a lot of support and we give it to them. Behavioral therapy, speech therapy, OT, IEPs, special diets, sensory rooms, consistent routines ... we do so much for our children.
This autism parenting gig isn't easy, which means we also need more support than other parents.
We don't provide it for ourselves.
To be a happy, healthy and effective autism parent, you MUST put the right supports into place. A helpful spouse, helpful family and respite care are the most common support systems, but many parents don't have those things. Maybe you're a single mom like me with no family nearby. Or maybe you live in a state that doesn't offer respite care.
Here are three other things I do for myself that make my caregiving more efficient and effective so I can focus on my business, our health, Tosh's education and our happiness.
1. Molly Maid
I often say I'd give up my phone before I gave up my regularly house cleaning service, and I'm only half kidding about that. It took...