Last week I went for a run and as I often do, listened to music on my iPod. I chose an album by Cake. The song, “I Will Survive” came on and something unusual happened.
I began to cry. Not tears of sadness, tears of gratitude and joy.
As I listened, the words spoke to me like never before. I realized so clearly I’ve not only survived, I’ve thrived.
The lyrics jumped out as a powerful metaphor for my thoughts, particularly the extremely painful ones like these.
I’m trapped in a life raising a child with autism.
Life sucks and would be so much easier if I didn’t have a child with autism.
My child shouldn’t have autism.
And the big wammy!
I don’t want a child with autism.
Man, just typing the words feels uncomfortable.
There was a time when I did believe the thoughts above. I spent many hours in a hole feeling sorry for myself. I felt deep pain and didn’t see the way out.
Then I met some amazing teachers who showed me the way. I wrote about the process in my post, “The Day I Discovered My Freedom.” I no longer believe the painful thoughts above.
Now, when painful thoughts try to tempt me with desire for a life other than my own I walk them straight out the door.
“Just turn around now. You’re not welcome anymore.”
“As long as I know how to love I know I’ll be alive.” I choose love. I choose life.
What to know how to do it?
Start by considering this idea. Your thoughts are stories you tell yourself about reality. They are your perceptions based on previous experience. Do you like the story you’re telling or does it cause suffering and pain? If your story isn’t working, you have all the power to change it. I did. I now not only survive, I thrive. This is my new story. What’s yours?
Let me know if you’d like help to learn how to discover your new story. I’d love to show you.
I’ve included the lyrics for the song by Gloria Gaynor, “I Will Survive”. Cover by the band Cake. This is my anthem.
At first I was afraid.
I was petrified.
I kept thinking I could never live
Without you by my side.
But then I spent so many nights
Just thinking how you’d done me wrong.
I grew strong.
I learned how to get along.
And so you’re back from outer space.
I just walked in to find you here
Without that look upon your face.
I should have changed my f*#@ing lock.
I would have made you leave your key
If I’d have known for just one second
You’d be back to bother me.
Oh now go.
Walk out the door.
Just turn around now.
You’re not welcome anymore.
Weren’t you the one
Who tried to break me with desire?
Did you think I’d crumble?
Did you think I’d lay down and die?
Oh not I.
I will survive.
As long as I know how to love
I know I’ll be alive.
I’ve got all my life to live.
I’ve got all my love to give.
I will survive.
I will survive.
It took all the strength I had
Just not to fall apart.
I’m trying hard to mend
The pieces of my broken heart.
And I spent oh so many nights
Just feeling sorry for myself.
I used to cry.
But now I hold my head up high.
And you’ll see me with somebody new.
I’m not that stupid little person
Still in love with you.
And so you thought you’d just drop by,
And you expect me to be free.
But now I’m saving all my lovin’
For someone who’s lovin’ me.
Oh now go.
Walk out the door.
Just turn around now.
You’re not welcome anymore.
Weren’t you the one
Who tried to break me with desire?
Did you think I’d crumble?
Did you think I’d lay down and die?
Oh not I.
I will survive.
As long as I know how to love
I know I’ll be alive.
I’ve got all my life to live.
I’ve got all my love to give.
I will survive.
I will survive.
If you have a song that speaks to you, I’d love to hear about it.
Yesterday the following article ran in the Huffington Post, “Autism and Assault in Our Family” written by Kim Stagliano. I met Kim in April at the annual Autism One conference in Chicago. As a mother of three daughters on the autism spectrum and editor for Age Of Autism, she is passionate and commited to speak the truth about autism.
After I read her story, my brain struggled to wrap itself around the reality of the situation. How could this happen? I experienced many emotions ranging from grief and anger to compassion for all involved. Now I will use them as fuel to initiate change.
My heart goes out to Kim and her entire family during this time of challenging circumstances. I stand shoulder to shoulder with her in her mission to shake the foundation. Together, we can educate and lead a revolution of change for our non-verbal children.
This story magnifies a universal call for help. I hear the call. I can’t change what already happened to the children and families. What I can do is share what I have learned raising my own non-verbal child with autism with the intention to educate and create awareness and understanding.
Children with autism spend a great deal of their waking hours in a heightened state of stress because their brains perceive some input as a threat and they don’t feel safe.
Everything that enters their brains via the sensory pathways (sight, sound, touch, taste, smell) first must pass through what I call the “gatekeeper”. If the “gatekeeper” perceives sensory input as a threat it stops the input from reaching the cortical level of the brain. The “gatekeeper” then triggers an autonomic nervous system response.
The autonomic nervous system has two states.
- Sympathetic state – flight, flight and freeze
- Parasympathetic state – rest and digest
The sympathetic response triggers when the brain perceives a threat. The heart rate increases, breathing gets shallow, the individual goes into narrow focus and physically appears on guard. Think of a trapped animal ready to protect itself from harm.
When in a sympathetic state a child may try to get away. I know this response very well. My son used to be a “runner”. If you block their escape route they may display aggressive behavior. For example, my son once bit a therapist who confined him when he did not feel safe. They may also completely check out and disconnect from the present moment. If you’re a parent of a child with autism this may all sound very familiar to you.
What to do when a child exhibits signs of flight, fight or freeze.
Create a space of safety and get yourself into the parasympathetic state. Learn how to do that for yourself. It can be as simple as taking three deep breaths. The preferred state of the nervous system is this parasympathetic state. If you stay there long enough, the child may start to synchronize their nervous system state with yours.
When a child reaches that parasympathetic state their breathing slows down, they calm down and start to engage and connect. Bottom line, they feel safe. When they feel safe, they’re willing to follow your lead and will more likely respond to your invitation to join in an activity. In this parasympathetic state healing accelerates and opportunities for building skills and cognitive learning occur.
My mission at After Autism is to teach people how to listen beyond words and pay attention to all the behaviors. Every behavior is a communication whether a child has verbal language or not. Behaviors are there to teach us what is happening for the child.
What do non-verbal children with autism need?
- They need patience and understanding
- They need healthy boundaries set with love and compassion.
- They need people in their lives to help them feel safe.
- They need help returning to their parasympathetic state.
What I can do? Show you how to do all of the above.
What can you do?
- Educate yourself on the signs of stress in a child.
- Learn to interpret their behaviors.
- Learn how to remain calm yourself when a child is in a state of stress.
- Support organizations whose missions are to provide education, support, resources and training for individuals who work with children with autism.
- If you know anyone raising a child with autism, ask how you can help.
- If you know someone who works with a child with autism and they’re struggling, encourage them to ask for help.
I have a larger list of organizations on my resources page but here are a few where I’ve found great support.
- Autism One
- Generation Rescue
- TACA – Talk About Curing Autism
- Parent Helping Parents – local to the Bay Area
Events like what happened to Kim’s daughter will continue to happen until we as a community, we as a country start paying attention to the need for training, education, and emotional support for families and anyone in a job where they accept responsibility for the well being of a child with autism.
A special note to parents of a non-verbal child with autism.
Tell your stories. When you feel something isn’t quite right ask questions. Trust your instinct and listen to your children. Even if they’re non-verbal, their behaviors will lead you to the truth.
For a little fun, I’ve included a recent two minute video of my boys jumping together on the trampoline. Ian completely trusts his brother and connects and follows Lane’s lead.
