NEW BRITAIN, Conn. (WTNH) — 14-year-old Ben Ciufolo and his mom Lisa Candera are on a journey. Ben opened up about his inpatient stays at the Hospital for Special Care’s inpatient autism center.
News 8’s Lisa Carberg asked if it helped him.
“I always have my hard days but it’s at a level where it’s manageable because we’re all going to have a bad day. When something really hard happens and that will happen, I want to be kind of like the same… I have all these tools I can use,” Ciufolo said.
Ciufolo and his mom moved to Simsbury where he was acclimating well. But when COVID-19 hit, his behavior and coping skills declined. They starting having trips to a local emergency room in search of help.
That is where Candera learned about the Hospital for Special Care’s Autism Inpatient Unit and got Ben admitted twice. Finally, she felt like the doctors there truly understood their journey and listened.
“I have been put off a lot by doctors saying things like, ‘well, it’s COVID, everybody’s stressed, everybody’s anxious,’ type of thing. He really understood the gravity of the situation and he was ready to act, and it just felt like finally, right, like a big sense of relief,” Candera said.
One of the skills of an Autism Mom is our lightning quick reflexes. Our kids move quickly and so do we in hope of staying at pace or just a half step behind. But sometimes, it is just as important to know when and how to Slow It Down.
This is especially true when you are feeling triggered. When we are feeling triggered, our brain releases chemicals into our body to enable us to fight or flee. Our bodies are in a stress response and a central feature of a stress response is speed. Our talking, moving, breathing and thinking all get faster. All in service of keeping us alive. This is essential if you are outrunning a tiger. But much less helpful when you are quarantining with your 13-year-old who is refusing to log in for afternoon classes.
In these cases, our lightning quick reaction of shouting at our child to “do it now” or cajoling them with threats of lost video time are not keeping us alive, they are keeping us in conflict with our child, ourselves, or both.
This is why it is important to create space between the trigger and our response. As the Holocaust survivor, Viktor Frankl, put it, “Between stimulus and response, there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.”
How to slow it down
When safety permits, in this space between the trigger and our response, we take every opportunity we can to slow it down. Here are some do’s and don’ts you can use to adjust your response:
- Don’t stay and fight
- Do walk away and breathe
- Don’t respond immediately to each outburst or provocation
- Do count to 10 or 100 before responding
- Don’t project what is happening now into the future (i.e., “if he is doing this at the age of 5, what will it be like when he is 10, 15 or 20”; “if she can’t take turns now, she will never have friends”)
- Do stay in the present with reminders like, “right now, it is like this”
- Don’t impute character traits based on behaviors (i.e. “she is a bully”, “he doesn’t care about us”)
- Do remind yourself that behaviors are not personal
- Don’t try to be a mind reader (i.e, “other people think he is weird,” “other people are judging us”, “other people have it easier”
- Do stay out of other people’s business
Repeat this is often as needed to create, maintain or return to a neutral state.
Harness your power
The more we do this, the more we interrupt our patterning and create new neural pathways, and new and more intentional ways of responding when we are triggered.
The more we do this, the more space we create between the stimulus and our response. And therein lies our power.
We can’t control Autism. We can’t control our kids. We can’t control other people.
We can control ourselves. Of course, there will be times when we don’t pause, and we react. And when that happens, we will give ourselves grace.
During one of my presentations called, “How to Regulate Yourself While Your Child is Melting Down,” I shared a story about a difficult decision I made on the opening day of ski season. We had been at the lodge for less than 2 hours when my son’s skis disappeared! ⠀⠀⠀⠀⠀⠀
As I was describing the situation, my son Ben asked to say a few words: “When you have an expectation about how something should go and it does not work out, it can be really hard to accept.” Damn right!
When things are not going the way you expected, planned, or wanted, you do have some choices.
- You can fight against
- You can resist it
- You could even try to power through it, or you can drop your agenda and drop into what is happening right now
2020 level set all of our agendas
Think of 2020 as the grand lesson of dropping our agendas. We did not expect COVID.And even when we did learn about it, we expected it to be a two-week interruption.
We expected our kids to go to school in person.We expected to go out to dinner, visit relatives, go on vacation, have birthday parties, and shop without a mask. Well, we were mistaken. What we wanted, what we expected, what we believed should be happening, wasn’t happening.
Learning to deal
Dropping our agendas means loosening our grip on how we believe it should be and dealing with life as it is. When we drop our agendas, we take the pressure off both ourselves and our child and we open up space to do the Next Right Thing.
For example, when my son was in elementary school, my agenda was for him to attend every birthday party he was invited to and stay for cake. This agenda was tested when, after 90 minutes of play time, my son was in sensory overload.
Being at the party was not enough. He wanted to open the presents, blow out the candles and sit in the chair of honor. But we just had to stay for cake. After all, it would be rude to leave. And, I don’t want to be that parent or my son to be that kid who made a spectacle of themselves. I wanted him to be invited again. I wanted him to have friends.
So we stayed. Instead of sitting around eating cake and chatting with other parents, I was chasing Ben to ensure that he did not overturn the cake, open presents or grab goodie bags from other children. It was exhausting.
As time went on, I made a shift. I could either fight what was happening or decide to call time when my son got to the point of no return. This is what it means to Drop your agenda.
Let go of how you think it should be and drop in to how it actually is and decide, now what?
For us, this meant sometimes we stayed for cake.
The question as to whether, how, and when to tell my son about his Autism diagnosis was a big one after he turned 10 years old. I wasn’t keeping it a secret. He knew he had a 1:1 aide, he knew he spent time with a special education teacher, and he knew that not all of his peers did this.
Still, the decision to tell him was a risk-benefit analysis. Would the risk that he would internalize the diagnosis and make it mean something about him outweigh any benefit he would receive from knowing that he had a diagnosis?
And then life happened
We were watching the first season of a Netflix show, Atypical. For those of you who have not watched the show, it is the story of a coming of age of Sam Gardner, a teen boy with high functioning autism, and the impact his journey towards independence has on his family.
My son immediately noticed the similarities between himself and Sam and pointed them out to me. Mom, he’s a lot like me. He has black and white thinking, he perseverates, is nervous about how to talk to people and does not like change. Well, of course Ben’s observations were spot on. He was a lot like Sam.
”Mom, do I have autism?”
When Ben asked me this question, all the churning my brain had done pondering whether and when and how to talk to him about his diagnosis was instantly irrelevant. By the tone and timing of the question, he sounded a little bit excited. Never in the eight years since his diagnosis had I imagined having this conversation while watching a TV show, but here we were.
So I responded in the only way I could
I said yes. And then waited for his response. And his response? One word: “Cool.” Ben seemed happy to have the information and the insight into his own struggles. It was almost like, okay, this is a thing. It has a name. It’s not me being bad or being weird. It’s just that I have autism. And with that comes certain struggles, but also, certain strengths.
Fast forward 4 years, Ben is 14 years old
So much has happened since he learned about his diagnosis – Covid, middle school, two co-morbid diagnoses (anxiety and OCD), two inpatient hospitalizations and three schools. He has had a lot of hard things to process in a short time and, still, he chooses not to see his diagnoses as a disorder, a life sentence or even unfair.
And this is a choice we all have
It is not an easy one. But here is the thing: hating on the diagnosis, cursing the hard does not change anything. Instead, it keeps us stuck and in pain.
Accepting the diagnosis is hard. It’s ongoing. And at the same time, it has the ability to set you free. Because once you are willing to say yes to what is happening, you can ask the most important questions: And Now What?
For Ben, that was writing an essay for his school paper where he shared his diagnoses with his peers and offered suggestions to improve the quality of care for people with autism.
Last summer, Today.com published a controversial article entitled, “Why there’s a war between parents of children with autism and autistic adults.” https://www.today.com/parents/autism-wars-why-parents-autistic-adults-are-battling-t227565
The article states that some members of the autistic community are upset with how some autism parents share details of their children’s lives on social media.They believe these parents are using their children’s disability for sympathy and oversharing personal details.
In turn, some Autism Parents have reported receiving messages from members of the #actuallyautisticcommunity, calling them names, accusing them of not loving their children and telling them that they should kill themselves.
The truth is…
This article came out just as I was launching my one-on-one coaching program for moms raising children with autism, and beginning to share more on social media, about my own experiences with my son. I wondered about the things I might hear from strangers.
- You are a bad parent
- You do not love your kid
- You are exploiting your kid
- You are doing this for attention
- You are making this about you.
Here is what I realized: Of all the terrible things I could imagine someone saying to me or about me, they paled in comparison to the steady diet of thought garbage I was feeding to myself.
And I am not alone
The real autism war is the one we are waging against ourselves.
- With our self-doubt
- With our judgment
- With our fear that it is our fault;
- With our belief that we are not doing enough
Sure. Maybe we don’t do it in the form of nasty posts. We are more subtle in our abuse.
We do it in a way that pretends to be helpful. We do it by asking ourselves what I would call “dead-end questions”, like:
- Am I doing enough?
- Am I doing the right things
- Why me?
These questions are inherently negative and keep us as victims . Implicit in each of these questions is the negative answer. For example, when we ask ourselves,”am I doing enough?” we are really saying that we aren’t doing enough. When we are asking ourselves ”what’s wrong with me?”, we’re really saying that there is something wrong with ourselves. They keep us in the place as victims – a place were we will never thrive.
The antidote to negative questions is powerful questions.
Powerful questions are thought provoking and proactive.
- If I was not taking this personally, what would I think/do?
- What can I learn from this?
- What if this isn’t a problem?
Powerful questions can help us stop waging war against ourselves. We can’t control other people, but we can decide how we treat ourselves.
The next time you find yourself asking a dead-end question, ask a powerful one instead.