I generally shy away from writing a lot about my relationship with my husband primarily because relationships are constantly in flux and putting something in writing about it creates a fixed point. (Doctor Who fans will get that reference!)
I don’t want to set a pivot point around which any future relationship discussions might have to revolve. I would much rather leave it flexible, allowing for ebb and flow which, for me, means not writing much about it.
However, learning about the Navigator’s autism and getting his diagnosis significantly impacted our marriage, and I think that is important to talk about.
It had an enormously positive impact for us and we continue to enjoy its benefits.
The Navigator’s diagnosis was a source of relief for us after years of muddling through trying – and failing – to find the best way to teach him right from wrong, rewards and consequences, social norms, and to simply keep him safe.
The diagnosis was a huge weight off of our shoulders – we were not bad parents.
We have become more patient with each other because when thinking of the member of our family who is most precious to us, we are no longer laboring under the painful feelings of What have we done wrong? What are we doing wrong?
After reading so many parenting books and listening to so much advice, it gave us the right path to follow that would truly help him learn right from wrong, to understand what motivated him, and how to give him tools and strategies to use to function within social norms.
We have a shared understanding about what we need to do and are able to successfully work as a team.
The diagnosis opened our eyes to who he really was, which enabled us to pair our innate love of him with true understanding. In the depths of my soul I know there is no greater gift we can give our child than honest acceptance of who he is.
The decision for me to leave my out-of-home job and its steady income in favor of consulting work from home meant that both of us would be working commission-only jobs.
It was a risk, one that we might not have been brave enough to take but for the courage that came from knowing what our son needed.
Probably the most important thing that came out of our son’s diagnosis was a shift in focus to taking things one day at a time.
When you’re taking things one day at a time, you don’t look too far behind and you don’t look too far ahead. There is a certain kind of zen that comes with that, a zen which feels right.
As a parent of an autistic child, I have heard a lot of the same kinds of questions from both other parents of children on the autism spectrum, and from other folks in general.
Questions included things like: When did you first realize he was autistic? and What were the first signs? Sometimes the answers were helpful for people looking to understand their own unique autism experiences, sometimes they were simply healthy human curiosity.
Below are the questions that were most commonly asked of me and our answers today (that means that tomorrow, next week, next month, next year, next decade, as our knowledge and experience grows, the answers might be different):
When did you first realize he had autism?
We didn’t. He was meeting all of his developmental milestones and while he had difficulties with transitions and social interactions, we thought he would outgrow them.
It was his first grade teacher that suggested he might have Asperger’s Syndrome and based on that suggestion we had him evaluated privately as well as by the school. Both evaluations came back with an autism spectrum diagnosis.
What were his symptoms?
His autism manifested as
difficulty with transitions
executive function challenges
some sensory issues
and the occasional meltdown.
We have come to realize that pathological demand avoidance is probably his neighborhood on the spectrum, and use PDA tools and strategies to support him.
What’s his “obsession”
People who have some awareness of the autism spectrum may have heard that sometimes people on the spectrum have an “obsession,” that is a strong interest in a single topic or selection of topics.
I prefer not to use the term “obsession” as it can have negative connotations, and there was nothing negative about my son’s strong interests.
While a strong interest in a single topic is not common among all on the autism spectrum, for the Navigator it was dinosaurs.
It was an ongoing area of expertise which grew and developed with him, and for us it served as a means to support him in many arenas.
What do you do for meltdowns?
First we worked to avoid situations that we learned could trigger meltdowns. If a meltdown occurred how we responded depended on the circumstances. Some meltdowns it was clear that he needed to work through it, and we let him find his own way, making sure we were there if he needed us, but also giving him space.
We sometimes had success in shifting the perseverative cycling of meltdowns by giving him juice as a new stimulus. He started asking for it, knowing it worked to get him “unstuck.”
As he grew older he was better able to identify his own impending meltdowns and focus on self-care.
Does he wander?
The word “wander” to me suggests that he might not know where he is going and that he just toddles off lost in a world of his own.
What did was decide he wanted to be somewhere else and just went without talking about it or telling anyone. It was very purposeful.
As he grew older we were able to talk with him about not just walking away, about asking us to go where he wanted instead of just taking off, and we made plans to ensure that he got to see what he wanted when we were out doing things.
What therapies does he receive?
He received special education classes at school and we also worked with him at home.
Having not received any specific professional guidance other than a diagnosis, his father and I leaned heavily on the structure the school provided through his special education lessons, and through reading a lot, learning from other families, and relying on our own experiences and pattern recognition skills until he was old enough and able to guide us as well.
Have you told him he is autistic? How did you do it?
Yes, we told him soon after his diagnosis. He was aware something was different about himself and very unhappy. We decided that knowing about the diagnosis would help him realize that he wasn’t stupid for not being able to function in the first grade classroom.
We told him by wrapping the conversation around his strengths and the strengths he gets specifically with his autism.
How do you manage the IEP process?
I know a lot of people find the IEP process to be a horrible experience, and it can be. For the most part, though, for us it was mostly a positive and constructive process.
The Navigator’s schools were consistently willing to say yes – from the top down and bottom up – to our requests or to find a way to meet the needs in the request if our initial ideas were not workable.
That being said, I would be lying if I said it was effortless for me. Even though meetings are routinely positive, I do frequently feel exhausted and emotionally drained afterwards.
I have learned not to schedule anything taxing or demanding on days we have an IEP meeting.
Do you have any advice for IEP meetings?
Because I am an attorney, people sometimes assume I go into IEP meetings with guns blazing. I do not.
For me, starting with an adversarial tone is frequently counter-productive and I prefer to start with the assumption that we are all equals on a team with a common goal because I know that by working together we are more likely to achieve our 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 first, then you can move up to more and more powerful options to achieve your goal.
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.
Probably the most valuable piece of advice I received is this:
Set the IEP meeting when you don’t have to be anywhere or do anything for the rest of the day.
This means that as you sit in the meeting, you have all the time in the world. Her advice was most valuable to me as a reminder that even though the school district is bigger than me and appears to have more power, I am an equal participant. My input and agreement is as important as that of the school.
What do you think causes autism?
I don’t know. I think that in the same way that autism manifests on a spectrum and uniquely in each person, the causes of autism are likely to be equally complex and individualized.
Yes, there is likely to be discovered causal themes – genetics, exposure to toxins, etc. – but I don’t think a “silver bullet” single cause will be discovered.
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The change impacted Vickie’s son directly because he earned a sub-minimum wage at his job with an agency work-program.
If the program could no longer pay sub-minimum wage, it might not be able to continue to employ the agency’s clients, most of whom would not be able to be hired elsewhere.
It was an example of unintended consequences. The goals of the new rule were outstanding: That people had the opportunity to earn minimum wage; that workers would not be taken advantage of by unscrupulous employers.
But the new rule did not take into account those workers for whom the issue was not necessarily a need to be able to pay for living on their own, but instead a need to work to be productive in society – “to have a job like anyone else.”
Unintended consequences happen a lot when dealing with entities and systems that serve and work with a lot of people.
It is difficult to design a one-size-fits-all approach when every person is very different.
I have worked with courts looking to improve how they served families and children in the dependency system, and have seen many times when a program was launched with amazing goals, was thoughtfully implemented, and still resulted in negative impacts on the very people it was trying to help.
What happened next was sometimes the most important thing:
They did not throw in the towel on the program, but instead tweaked, modified, and sometimes redesigned it to eliminate the unintended consequence.
It was hard work which took a lot of energy, creativity, and dedication.
Unintended consequences don’t just happen in huge executive and judicial branch entities. Sometimes they happen in our families, too.
We reached a moment like that in our journey with the Navigator.
When we enrolled the Navigator in online school, one of the deciding factors was that he would be able to get social interaction with his peers by taking electives at his local zoned school.
It was intended to be the best of all worlds – academics at home, with social opportunities at school.
It was in effect a self-selected accommodation, which required very little IEP-based support from the school district, and which worked well for the Navigator.
But we did not take into account the effect of possible school refusal when we were envisioning this path for him.
School refusal meant the unintended consequence of zero social interaction for weeks at a time, during a period in his life when interacting with his peers was important to his growth and development.
Once the unintended consequence was discovered, we needed to see what we could tweak, modify, or redesign to eliminate it.
This meant working with the school district, and holding multiple IEP meetings because this scenario was new for them, too.
The new goal: Adding meaningful social interaction into the Navigator’s schooling while continuing with the online curriculum.
Stay tuned as we answer a very important question in this process: Where does online school fall along the continuum of “least restrictive” and “most restrictive” under the Individuals with Disabilities Education Act (IDEA).
For PDA people however, everything is a demand. Whether it’s something that someone else has asked of them or whether it’s something they think is expected without any outside inference. Whether it’s something unpleasant or something pleasant that they’d love. Whether it’s something truly difficult such as exams or something simple such as standing up.
Even being expected not to do something is a demand. The way we do things are demands. Even things that are essential and come naturally to everyone are demands, like breathing and eating. Everything, even things you’d never consider in a million years are demands to a PDA person. It’s just the way our brains work.
While I might choose among demands after taking into consideration a number of factors (his stress level, how much time we have for the demand avoidance, how necessary the demand is) something I realized as he got older was that offering him more challenging choices sometimes made previously stressful demands less stressful.
Sometimes when I gave him harder choices, choices outside of his normal decision-making, it expanded his experience and made him a little more comfortable with other demands.
One example took place when he started music classes at his school, and we needed to rent an instrument from a local music store. He had to come too because the store needed to correctly size the instrument for him.
He was anxious about leaving the house and how far we had to drive to get his instrument, so I gave him a choice:
We could keep traveling to the store I had called and knew they had the instrument we needed; or
He could call a closer store and ask them while I drove.
The choice between conversing with a stranger or traveling the longer distance.
He was chagrined. He tried to talk me into making the call – I explained that I could not use the phone while I was driving.
“You decide which one you want to do,” I said. “You can do this, and it is ok with me whatever choice you make. There is no wrong decision.”
He decided to call the closer store, and unfortunately it was closed.
But the rest of the day was smoother for him, and I believe that the experience of deciding to make the call and facing the anxiety of that choice served to make other more routine demands easier for him.
When I later asked him what he thought, he agreed that was a plausible explanation.
This thorough and informative infographic on executive function from Understood is a re-design of a similar infographic by the National Center for Learning Disabilities before it reorganized and became Understood.
I have always liked this infographic very much because executive function is one of the key areas related to my son’s autism and with which the Navigator has consistently experienced challenges.
This infographic describes it so well!
These are the things we work on the most to help the Navigator develop tools and strategies to tackle this challenge with the goal is to give him what he needs to be able to succeed at what ever he wants to do – just like any parent.
I also signed up for regular email updates from Understood because I liked what I saw and highly recommend exploring their site.
The Navigator has been playing video games online for years.
First, he played Minecraft on his own in single player. Then he found YouTube, which introduced him to a many kinds of games, including Minecraft servers.
When he was ready to play on a server, I signed him up for Autcraft where he learned what a truly safe and pleasant online environment could and should be.
Soon he was ready for more challenges, and he expanded outward, trying new games and learning how to manage early access games through the Steam site.
Here are his thoughts about
current favorite games,
the ones he recommends for people starting out with video games, and
what he thinks is the best place to play online
Navigator's Thoughts on Video Games - YouTube
You can get more information about these games and locations via the following links:
Subnautica – This is a beautifully rendered game which can be played in creative or survival mode. Videos for this game are blocked in YouTube’s “restricted access” mode due to the scariness of some of the sea creatures.
Space Engineers – This is a complex building game that requires an understanding of three-dimensional space and physics.
Have you ever done an ice-breaker at a meeting or training? It is when the trainer or facilitator warms up the participants by asking a question or engaging in an activity.
It is to get people – usually strangers to each other – more comfortable before moving into the substance of the session, based on the idea that discussion will be more robust and learning more thorough when participants are comfortable.
I have seen ice-breakers such as what is my favorite animal and why; or if I could pick anyone, living or dead, who would I like to have lunch with.
One I remember clearly was when we were asked to offer our favorite quote. I was a bit flummoxed – it was something I had never really thought about before.
At the time, when it was my turn I selected “make it so” Captain Picard’s quote from Star Trek, because I admired how it was the ultimate in anti-micromanagement – he trusted his subordinates’ ideas and skills to solve problems and do their jobs.
But that really wasn’t the quote that fully reflected my personal philosophies and sensibilities.
So I thought about it.
Like many meaningful things, when I realized the quote that was my true favorite, it was one I had heard several times. It was in a particular context that it made its greatest impression on me, in a Steve Martin film called L.A. Story.
The quote is
there are more things in heaven and earth, Horatio, than are dreamt of in your philosophy.
It is Shakespeare, from Hamlet, act 1, scene 5.
That is not the only quote from Shakespeare in the movie, which was loosely based on A Midsummer Night’s Dream. My other favorite quote from the movie is not Shakespeare, it is Martin: “A kiss may not be the truth, but it is what we wish were true.”
The “heaven and earth” quote is “said” to the main character by a highway sign (yes, a highway sign. Don’t ask, go watch the movie, I am not going to give up any more spoilers) as an answer for how seemingly magical events occurred in the movie.
I loved that.
Not because I believe in magic. I don’t. I loved this because it essentially said: You don’t know everything.
That is the same way it is used in Hamlet, to help understand the appearance of a ghost.
I love this quote because it is about possibilities, that life is more than what we take in with our senses, more than what we process with our brains.
It is about thinking outside of the box; that what we think is real is so much more.
This philosophy is at the foundation of Star Trek and Doctor Who, stories of the quest for knowing the more, premised on the acceptance that we don’t know it all.
It is a philosophy that supports parenting an autistic child: To assume that I don’t have all the answers and start from that place of open to all information.
To find ways to help him grow and thrive, I have to think outside of the box.
To find ways to move “heaven and earth” for him I need to accept that I don’t know it all and to see the world through his eyes.
As a parent of a child with autism spectrum disorder (ASD), you know that your child often responds in ways that fit the situation. At times, they transition easily and return to the task at hand.
Other times, and sometimes even in the same situation, they respond in ways that disrupt themselves and others.
In certain circumstances, their need for instant gratification can quickly ramp up to unusual behavior. It can be hard to know how to help your child when they reach conclusions from an entirely different point of view than you.
You will learn a lot about what is actually happening in their brain and body if you can suspend your assessment of your child’s actions as neither “good” nor “bad.”
I call this “detective mode.”
It is the non-judgmental observation of everything a child does. If you watch patiently, your child will show you what does and does not help them focus and learn.
Detective mode is a shift that parents must make from focusing on and trying to “fix” behavior, to a non-judgmental observer. In this way, the parent becomes the student and the child becomes the teacher.
In detective mode, you as a non-judgmental observer try to determine what contributes to your child’s calm behavior and what contributes to hyper-excitable outbreaks. Some events and circumstances can calm an individual and other circumstances can excite.
Some children are unable to reach a state of calmness and self-assurance by themselves. They need help (usually this comes from a parent) learning what is calming or exciting to them.
Detective mode seeks a deeper understanding of what causes a child’s actions. You are trying to determine what is actually happening in their brain and body to promote calmness or overwhelm.
The following exercise will help you as you observe your child’s behavior. You are specifically looking for what works to calm and focus your child and what revs them up.
Begin practicing by turning detective mode onto observing yourself. Next time you are in the middle of a large project and beginning to tire of it, but past the point of no return, notice your strategies to maintain your attention and interest in the task at hand.
What do you do to keep yourself keyed up, time efficient, and focused enough to prevent errors?
Tune-in – allow 5-10 seconds
Recognize – allow 5-10 seconds
Refocus – allow 10-20 seconds
As adults at our jobs (parenting, educating, or otherwise), we adjust to changing circumstances and distractions all the time: We tune-in and listen to the sound in the hallway. We recognize that there is a stream of people crossing the window by our office, we refocus back on our reading activity.
As you become comfortable with using this exercise on yourself, using it to assess what is contributing to your child’s behavior will become more natural. Be patient with this process.
Remember that you are trying to understand someone who processes the world very differently than you.
Tune-in, recognize, refocus can be taught at any stage of a child’s life.
We want to teach children with ASD to tune-in to the potential events, distractions, or frustrations that upset them, recognize what is occurring and any feelings of frustration they have (before kicking anything), and then refocus their attention back to the task at hand.
The emphasis is on, “take a deep breath, and keep going.”
Ultimately, the shift to a non-judgmental observer (i.e., detective mode) will bring clarity to the source of the triggers in your child’s everyday life. I have no doubt that you already know what can upset your child. Detective mode seeks to uncover the cause of those triggers.
The knowledge this brings can not only help you bring calmness and coherence into potential trigger situations, but also can allow you to teach your child with ASD to do this for themselves.
Author of Unique Learner Solutions, Suzanne Cresswell is an occupational and physical therapist who has worked with unique learners for over three decades. Suzanne works to educate and provide proven solutions and strategies to those that parent, instruct and work with unique learners. By creating an understanding of unique learners and their learning behavior, she helps parents, teachers and the students themselves find the ability in learning disability. You can learn more about Suzanne and how she helps unique learners and their parents at Unique Learner Solutions.
Open: When I was ready to have a child, I read many books on pregnancy, learning the best ways to do take care of myself for the health of my child.
Closed. The reality of working full-time, pre-eclampsia edema, and hypertension meant I had to adapt to meet my own needs as well as my child’s, even if it was different from what the books recommended I do.
Open: After I delivered, the nurses in the maternity ward, books, the internet, my friends and family, suggested to me what I needed to do to take care of my baby.
Closed. I cared for my newborn the way that worked best for us after learning who he was, what he needed, and even if it was different from what the nurses, books, the internet, my friends and family suggested I do.
Open: As he grew older, I listened to his teachers, therapists, specialists, counselors, learning the best ways to support him in his growth and learning, including related to his autism diagnosis.
Closed: I took all of the information I had, applied it to what I knew about my son, and moved forward, even if it was different from what the professionals recommended I do.
Because I was the parent and the decision was mine.
Being a good parent includes finding a way to maintain the balance between being open to new ideas, suggestions, recommendations, even opinions, and knowing when to close the debate and move forward with a parental decision.
Almost everyone has an opinion on parenting, from experts to every day people.
And suggestions, recommendations, and opinions can be good. There is a lot of value in collaborative problem-solving, and evidence that the old truism two heads are better than one really is true.
Because I have a great deal of respect for the doctors, therapists, teachers, professionals, and even my family and friends, I often open myself to hearing ideas, suggestions, recommendations, and opinions.
But there comes a time when a decision-maker must make a decision – after being open to new information, the discussion must be closed and a decision made.
What struck me most was that this was a woman who successfully raised her son to adulthood. This kid is an adult. As in, she-has-over-20-years-of-parenting-her-son-why-does-someone-think-she-still-needs-advice adult.
She has had decades of being open to reams of good ideas, suggestions, recommendations, and opinions, and she has had decades of making good decisions in the best interests of her child.
That she knows what she is doing is clearly demonstrated in the amazing person she has raised.
Perhaps what the well-meaning advice offerers really need to do is to
ask what decisions have already been made
then listen to and learn from the answers
What they may find out is that their advice is really not needed.
The debate is over – the case was closed a long time ago.