Author: Lynn Vigo, MSW, LICSW

In His Own Words: An Interview With Trevor

bannerWe’d like to introduce you to our guest for today’s blog. Trevor is 23 years old and is the Media Director of his family’s business, Consetta Group.

 

 

Lynn: At what age were you diagnosed with ASD?

Trevor: At age 5

Lynn: Do you recall what and when your parents told you about your diagnosis?

Trevor: It was more I heard here and there growing up from my parents that I had autism, except for years I didn’t even know what it was. So the fact that I knew I was autistic had no effect on my childhood.

Lynn: Did you participate in any therapies such as ABA or speech or occupational therapy?

Trevor: Yes, I had speech therapy when I was little, and from Kindergarten through sixth grade I had extra accommodations through my school to help with social skills. I had these same types of accommodations in middle school and high school to focus on my academics, and in college I had occasional accommodations to help me in test taking.

Lynn: Did you participate in special education in school? Were you in an inclusion classroom or a contained classroom?

Trevor: The special accommodations I mentioned above during grade school were set in a separate room from my usual classroom, and was with one or two other students on the spectrum. I had none of this in middle school, but in high school I was placed in a special class to help students struggling with their grades.

Lynn: What has been the most challenging part of ASD for you?

Trevor: Making friends. It was never a problem for me in middle school or grade school, as I never had much of a desire to make friends. It was in high school and on to today where it became a desire and struggle for me.

Lynn: What do you think helped you the most with this challenge?

Trevor: It was mostly a matter of trial and error. The more people I met with, the better idea of who I wanted to be friends with. Eventually the right friends came to me, and they helped me to learn what being a good friend is about.

Lynn: Do you know young adults who have severe ASD?

Trevor: I know of several young adults with severe ASD, but none well enough to give a knowledgeable description about.

Lynn: If so, how do you think “your ASD” and “their ASD” are similar or different?

Trevor: Everyone’s story is different. I have never met two cases of ASD or Down syndrome that were exactly the same. One may be nonverbal, one may be more independent. It’s important that we not categorize between levels of functionality, because they are limitless.

Lynn: Do you think you have an understanding of how someone with severe ASD experiences/processes the world?

Trevor: I honestly do not. In order to know how someone experiences the world, you have to step in their brain for a day.

Lynn: What do you think about the idea that ASD isn’t a disability but a difference in thinking or personality?

Trevor: I think that it is unacceptable how few people grasp this concept. While people with disabilities may not be able to do commonly acceptable tasks such as writing, talking, or living independently, they still have so many other abilities involving the mind that others would only dream of having.

Lynn: When you think back on growing up, what do you think the adults in your life got right?

Trevor: That we need to respect and obey our authorities, for they are our role models.

Lynn: When you think back on growing up, what do you think the adults in your life got wrong?

Trevor: Their priorities in what I need to learn in school were all wrong. They try to say, “If you don’t do well in this subject you’ll never get a job!” But from what I now can tell, there is a profession for everyone big or small, even if it’s just putting labels on jars like I heard one person with ASD does for a living.

Lynn: There’s so much about ASD that we still don’t understand. What is your hope when it comes to current efforts at understanding what causes it and how we help those affected by it?

Trevor: We should not be worried about what causes it, because that immediately sets us into a mindset that autism is a curable disease. Our focus must be on how we can help children with ASD to know what their strengths are, and how to use them. I also would like to see the educational system accommodate itself to fit in with what the student is genuinely great at doing.

 

Mindful Monday- Holiday Tips

 

Halloween is just a soggy sweet memory and you know what that means, don’t you? It means that we’ll soon be hearing holiday music in the aisles as we sip our gingerbread lattes.

It’s so easy this time of year to get swept up in the mad rush to THE HOLIDAYS.  Or if you’re like me, you get a little irritated and decide to try and ignore it all. What’s the big hurry?

Now is a good time to set some mindful intentions about what’s to come. Here are some tips for mindful holidays. Stay tuned for more the next couple months.

  • Set an intention (or two) for the upcoming holidays. It might sound something like this: “This year I’m going to focus on the meaning of the holiday instead of the marketing of it.”  Or “This year I’ll practice self-compassion when things don’t go as planned.” Or “Knowing there will likely be both stress and joy, I’ll expect some of each and be ok with it.” 
  • Make a list of things that have caused you stress in past years. It might be last-minute shopping or accepting too many party invitations or eating too many holiday goodies. Decide which ones you might be able to address ahead of time in order to lessen the stress.
  • Enlist the help and support of friends and loved ones by agreeing to slow down and simplify.  This might mean agreeing to a potluck meal instead of doing it all by yourself or the adults agreeing to give to a favorite charity instead of buying gifts for each other.
  • Remember that mindfulness means being aware in the present moment. It’s impossible to do this if we’re racing ahead in mind and body.

 

I love this definition of mindfulness from James Baraz:

“Mindfulness is simply being aware of what is happening right now without wishing it were different; enjoying the pleasant, without holding on when it changes (which it will); being with the unpleasant, without fearing it will always be this way (which it won’t).”

 

 

Mindful Monday- Don’t Try to Fix It!

We’re so accustomed to trying to fix things but also moving on to the next bigger and better thing (is that expensive new phone truly that much better than your last one?).  This human propensity tends to lead us to try to fix emotional challenges and when that doesn’t work, we often give up.

 

 Say, you’ve had a rough day at work or with the kids and are sharing with your partner whose good-intention answer is to problem-solve your feelings. We all know how well that usually works. We don’t want to quit the job and we can’t quit the kids. I know. I’ve tried. We simply want someone to validate feeling badly. So we offer polite thanks-but-no-thanks for the advice or get more upset for not feeling understood.

What we are asking for, in so many words, is a mindful awareness reminder that we can have bad or hard moments (okay sometimes hours) in our days without needing to declare the entire day a disaster and without needing to do anything at all.

Here’s an easy mindfulness exercise for when you’ve had/are having one of those days.

  • Get comfortable – this may be sitting or lying down or moving your body.
  • Take three deep breaths in and out.
  • Say to yourself – I had some hard moments today. I felt/feel (name the feeling(s)).
  • Stay with this for a couple-three minutes. You don’t have to relive the day but also don’t resist if it pops up.
  • Say Hard moments are part of life.
  • Say Tomorrow is a new day.

 That’s it. The point is to validate your feelings without exaggerating, resisting, or judging and with recognition that we all have hard moments. No one is spared.

Autism and Coping Tools for Parents Part 5: Humility

Most new parents will admit that no matter how prepared they felt going into childbirth, once baby arrived they realized just how much they didn’t know. Thankfully, there are abundant parenting resources to be found to help with everything from colic to diaper rash.

 

Parents of kids with autism however, get the award for “most humbling” parenting, as our learning curve is Grand-Canyon steep. We’ve yet to see a How To guide for handling the  daily dilemmas that autism brings.

Before autism, I was quite organized and thought that if I planned and worked hard enough at something, it would all work out. Was I ever surprised to learn how unorganized my life had become and that no matter how much I put my mind to the challenges, things often didn’t work out as hoped or planned. There were days I’d be reduced to a puddle of tears in the middle of my kitchen floor. As a social worker, I was skilled at locating and navigating resources for others but when it came to my own child, I found myself humbly amongst scores of “regular old parents” trying to make sense of confusing, hard-to-access services.

As a busy parent, you may not have time to see the benefits of humility but I assure you – they are there. Here are some that I’m aware of.

Realizing you don’t know it all  . . .

  • Allows you to ask for help, a good thing to learn, particularly early on in the diagnosis
  • Allows for curiosity, always helpful when trying to figure out our kids
  • Allows you to build a team for you child and your family- this is a team effort
  • Allows you to continue to ask, research, read, and explore possibilities
  • Allows you to share the difficulties and the successes with others
  • Allows you to become a skilled listener and to take the other’s perspective
  • Allows you to pick yourself up and try again – and again and again

What research tells us about humility and great leaders

Jim Collins is a business leader and researcher who wanted to know what is was that accounted for the differences between good companies and great ones. His team came up with a list of criteria for identifying the good (the comparison companies) from the great (Level 5). When they looked at all the variables that accounted for Level 5 companies, it wasn’t what you might expect of the leaders – that they were extroverted, aggressive go-getters. Quite the contrary, they were:

  • Calm
  • Determined
  • Unwavering resolve
  • Humble
  • Self-understanding and awareness
  • Openness
  • Perspective-taking

Sound familiar? Like it or not, as parent, you are the leader of your child’s team. Teachers, therapists, doctors, and other family members all look to you for direction.

In summary, don’t worry if you don’t have it all figured out. No one does! We do the best we can under difficult circumstances because we love our kids and would move heaven and earth to help them.

Here are some reminders for those times when you’re feeling less than confident in parenting:

  • We don’t know what we don’t know (so much is new and unpredictable)
  • Surrender to that truth
  • Stay open to learning
  • Calm always trumps chaos
  • Be aware of own strengths and limits
  • Put ourselves in the shoes of others
  • Ask for help and help others

“Before I got married I had six theories about bringing up children; now I have six children and no theories.”

  • John Wilmot (2nd Earl of Rochester, 1647-1680)

Is parenting your child with autism a humbling experience? Share your story with us. We’d love to hear from you!

 

 

 

 

Mindful Monday- Snippets from Shamash Alidina

I recently participated in a thirty-one day Mindfulness Summit, and a handful of presenters were my favorites, including Shamash. I liked his easy-going style and humor and I also just like saying his name. He, like most of the summit speakers, has taught mindfulness for many years and has a book on the subject. While I’ve never cared for the title of this book series, I did enjoy his Mindfulness for  Dummies and will share some of his mindfulness tips.

 Healthy & Helpful Attitude

Shamash tells us that attitude is an important part of mindfulness and that attitude is a choice. Being aware on the attitudes we bring to life – whether it’s marriage or parenting or our work or practicing mindfulness – can affect the outcome in so many situations. We all know people who seem to have a sour outlook on life. Life is not fair. No one has it as hard as I do. Nothing will ever change. Nobody understands. Why do bad things always happen to me? No one likes me. They seem eternally stuck in unhelpful attitudes.

 Shamash identifies these helpful attitudes that are the foundation for a healthy life:

  1. Acceptance – not giving up but allowing thoughts, feelings, sensations to exist without resistance
  2. Patience – listen more than you talk, choose the closest rather than the shortest line
  3. Seeing afresh – try looking at common things with new eyes – what have you missed?
  4. Trust – believing that both joys and challenges are temporary/ to be expected helps build trust that things are okay
  5. Curiosity – ask lots of questions about thoughts/feelings/sensations “I wonder what this is about?”
  6. Letting go – First realize what you’re holding onto. Doing so helps to let it go.
  7. Developing kindness – non-judgment of self and others
  8. Appreciating Heartfulness – pay attention to whatever brings you warmth and happiness
  9. Gratitude – even if not perfect, acknowledge the good there is to your life
  10. Forgiveness – for self and others – acknowledge being human and that we all are imperfect

 

 Now imagine the opposite attitude of some or all of the above. Identify which of these attitudes you might need a little work on. See if it makes a difference.