In honor of Autism Awareness Day, we are proud to present one of our Parent Heroes, Elizabeth. Elizabeth is also known as Autism Mom, with a very helpful site that serves as a widely-read resource for parents of children with autism.
You call your son the navigator, for our readers, what was the genesis of this name?
From the very beginning, I made a choice to not use his real name in my blog to protect his privacy, anticipating a day when he would want to have control over what was communicated about him. (This is not the only way to do it, of course – other bloggers make other choices based on their own situations and I respect those choices.) At first I just referred to him as “my son” and I did not settle on a “blogonym” for him for a while.
The inspiration for “the Navigator” came when we were on a family trip and we dropped off Autism Dad to visit some friends. It was a detour that took us off the route were were accustomed to and driving on roads that I was not familiar with. My son volunteered to be the navigator for me: “I will need to learn how to read a map, though,” he said.
He was great at it, and as we worked together driving home I realized that our jobs as parents were to teach him the “map reading skills of life” so that he could eventually chart his own course.
The name also reminds me that now that, he is older, I need to check with him to see how much involvement he wants in decision-making about him, like IEP accommodations, screen time restrictions, chores and responsibilities, etc. Eventually he will make those decisions on his own.
There is some controversy in the autism community over awareness day/month. What do you think? How do you think we should best bring awareness to issues surrounding autism?
During the first Autism Awareness Month after my son’s diagnosis, I came across this meme:
Before my son was diagnosed, I was barely aware of Autism (even with my background in children’s issues). If we consider my family as an average representation of the population, and assuming that we don’t live under a rock, our limited knowledge prior to diagnosis suggests that Autism awareness throughout our society has not yet occurred and is still needed.
My background is in implementing systems change in child welfare courts, and the most successful examples were those where culture change took place at the local, state, and national levels at the same time, with everyone collaboratively working toward the same, agreed-upon vision using the same, agreed-upon messaging.
The other element of success was when people were not only told what they needed to know but also what they needed to do. I will never forget when a judge stood up and said “I understand I need to be aware of issue X. What I need from you is to tell me what to do about it.”
I believe this is where the controversy over Autism Awareness Day/Month comes in. As far as I am aware, there is no agreed-upon vision, no agreed-upon messaging, and no collaboratively-developed call-to-action offering suggesting steps for caring and concerned people to take (beyond buying blue light bulbs) that allows them to build on their awareness.
I think those who promote a continuum of Autism awareness – understanding – acceptance – respect have the right of it. Building on this continuum would meet people where they are in their knowledge, would show them where to go next, and could give them tools to use – actions to take – to get there. The right someone just needs to take the lead.
How was your son diagnosed?
He wasn’t diagnosed until he was seven, when he was in first grade. We knew he struggled understanding social rules and with transitioning, but he met all of his developmental milestones and was extremely verbal and smart. We thought he would figure things out and didn’t suspect Autism. I had a peripheral awareness of Autism as a disorder that affected speech, with which a child might rock, and line things up. That was all I knew about it and our son didn’t display these characteristics.
It was his first grade teacher who suggested he might have Asperger’s, and based on that suggestion, we had him evaluated privately at the same time he was evaluated by the school. Both evaluations came back with an Autism spectrum diagnosis.
If you could tell a mother or father in the diagnosis process one thing, what would it be? Ok, it can be more than one thing.
You didn’t do anything wrong.
It is ok to be scared, to be angry, and to grieve.
Seek out the Autism community and learn from it while remembering it is ok for your journey to be different than others’.
Let your child show you who they are and see them through the lens of love.
How did you go from lawyer to Autism Mom? How does your law inform your advocacy?
The legal education is very valuable because I automatically analyze everything from a variety of different viewpoints, from his IEP accommodations, to his classroom environment, to his requests for screen time and privileges. This is very helpful for feeling like I have tried to think of everything.
I am not the kind of lawyer people think of, like they see on television. I learned early on that I did not like the adversarial process and left private practice for policy development work. The skills I developed were easy to transfer to being an Autism Mom because both require an open mind, willingness to have my perspective changed, being comfortable trying new things and ways of doing things, willingness to have an idea fail and to start again, among other things.
What was really surprising to me was how fast my advocacy skills rose to the surface when someone said something that was (in my opinion) out of line at one of our very first IEP meetings. I was not the least bit uncomfortable about “bringing it” in that adversarial moment!
For the most part, though, I start with the assumption that we are all equals on a team with a common goal. If your goal is to get a bird off a fence, don’t first pull out a bazooka. Try waiving your arms at it, then you can move up to more and more powerful options. As Clara Oswald on Doctor Who says, “Never start with your final sanction; you’ve got nowhere to go but backwards.” That doesn’t mean I can’t or won’t “lawyer up,” I simply don’t start there.
Can you tell us a bit about The Navigator’s schooling? How is he best accommodated? How have these changed and what are your best practices for maintaining support and informing the curriculum?
The Navigator attends public school in the general education curriculum. He gets 30 minutes of pull-out special education that started out daily and has decreased to a couple of times a week.
Probably the most important accommodation that he received was an over-arching understanding that his “unexpected” behaviors generally stemmed from his Autism and he was not made to feel bad about himself by being disciplined for Autism-related behaviors. Knowing he was accepted – and even liked – for who he was (unexpected behaviors and all) made an enormous impact and laid the foundation for all that he has learned.
Almost every other accommodation he received was related to helping him learn what behaviors were expected of him at school, a few related to sensory issues, accommodating stimming, and relief from when he is feeling overwhelmed. These have dropped off as he has no longer needed them.
I think the most important component for supporting and informing his education is seeing everything through a lens of his strengths – how can his strengths be used to develop accommodations and support him. I am the gatekeeper for that element, always looking for it, always asking for it.
Autism has a great online community. How has being part of that community shaped your blog and mission?
The online Autism community is amazing and I learn so much every day. When I started my blog, my mission was to make our experiences and lessons-learned available to whomever found them valuable, with the hopes and expectation that I would learn from others as well. The reality has far exceeded my expectations, and I have learned much more from the community than I ever imagined I would which, in turn, is then reflected in – and dare I say evolves – my blog.
I love all your posts about Minecraft. How is this particularly relevant to the Autism community?
I was so grateful that when my son got interested in Minecraft, I was already aware of it via the Autism community. Minecraft is a creative, generally non-competitive game that utilizes imagination, and a lot of kids on the spectrum like to play it. I was able to introduce him to Autcraft, the Minecraft server for children and families on the Autism spectrum, which is a safe, pleasant place for him to play.
There are some great posts and articles by others about how Minecraft can help kids with Autism in the areas of mathematics, executive function and social skill building. However, the truth is that Minecraft is simply fun! I play, too, and it is a great way to connect with my son.
Finally, what are your favorite tips, lifestyle hacks and inspirations that keep you motivated and your life as streamlined as possible?
We keep a routine in our house to support our son, and that means I have to be very flexible, which seems counter-intuitive and can be difficult if I have my own agenda as well. The thing that works the best for me is when I get ready in the morning, I do everything I need to do for me before he gets up – I can’t put off moisturizing my face or wait on getting dressed because I end up being worried about getting that done instead of focusing on getting him through his morning routine. I focus on me first so that I can then wholly focus on him.
I try to get up in the morning at the same time each day, which is more than an hour before my son wakes up. This allows me to get some quiet time at the beginning of the day. After I drop my son off at school, I take the dog for a walk and listen to music on my headphones. That is very relaxing and energizing and helps me set up the rest of my day. I keep a list of things I need to do and take a lot of satisfaction out of crossing completed things off the list!