autism

The Playground

/ embracingspirit / 1 Comment

Looking at this picture it looks like an average playground, right? A place where moms and dads take their little kids to play outside and learn to socialize. For most kids this is a place to squeal and run around with other kids that you don’t even know. Funny how kids can just jump right in where there is no judgment or shame or the tricky navigating that takes place as people begin to age and notice differences.

It was at this very playground that I had taken my kids to play over 26 years ago that I noticed the big difference. Being a native to my city I am often overcome with memories of not just my childhood, but the memories of raising my own family here and the changes that have occurred over my life time. It never fails when I walk past this playground I am transported to a time over two decades ago when a simple intention to have a little picnic at a playground shook my world.

Triggers are a funny thing like that. They sneak up on you when you least expect it and send you back in time. Thankfully, over the course of twenty years and lots of personal growth I am no longer triggered to a place of pain, but rather I think of the young mother that I was who was lost in her own life and about to embark on something that would either break her or make her.

Seeing the merry-go-round on my lunchtime walk I was reminded of the sunny summer day when I was carrying my one year old around making sure that he wasn’t eating too much sand or climbing on things too high, and trying to watch my older two kiddos. My oldest son was fully self-sufficient at a playground and was busy making new friends and doing what boys do on playground equipment. Scanning the area for my daughter, my eyes finally landed on the merry-go-round. There she laid, stretched out and holding on with her little hands while a group of older kids were spinning her as fast as they could. She was fixated on the sky and completely at ease.

Huh. That is strange I remember thinking. No other kids were on this piece of equipment, only the bigger kids spinning her. I watched for a few minutes and eventually walked over and spoke to her. She was completely unaware of the spinning sensation or how most of us would feel being spun into a dizziness that I cannot even imagine. I tried with everything to get her off the merry-go-round but the tantrum that came when I touched her arm sent her into a rage that I had never seen.

Then came the stares from other parents. Then the grabbing of their little boys and girls and taking them far away from this now screaming, sweating, snotty, disheveled mess of a three year old. Then came attempting to get my boys and her get out of there fast as I could while the gasping of others was all I could hear. Then the protests from my oldest son that we had just got there.

I am sure to an onlooker it was scary or even perhaps the thought that she was being a “bad” kid.

Soon after my life began to turn itself upside down. More and more opportunities occurred that I was aware of how different my little girl was. More and more opportunities for me to feel shamed and embarrassed and on the outside of a club called parenting. More and more sadness and the great unknown.

Over the years I learned that her little brain could not interpret things like spinning and effectively organize the sensation and as a result her brain caused chaos in her sensory system, so she learned that spinning was not something she was allowed to do, although she craved it.

Today, I am able to walk past that merry-go-round–the exact one that was my first look at my different girl– and be grateful to see that it was an experience that would either crush me or lead me down a new path.

Although it took many years to get on the path, I eventually did and it led me someplace amazing.

My message hopefully will be read not as sadness but a reminder that you never really know what is happening in a person’s life and that different doesn’t always relate to bad or scary. Blessings to all the parents struggling and my hope is that the world softens a bit and people choose to be helpful instead of judgmental.

Follow me for more goodness!

Welcome to Holland

/ embracingspirit / Leave a comment

“I am different, not less.” 

 Temple Grandin

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it and to imagine how it would feel. This poem was given to me when my girl was just eight years old and it changed my entire view of what I was given. In time this poem made more and more sense to me as I learned to not only accept the challenges that we had but also see that she was literally the little spark of goodness that opened so many doors for me to heal, and as a result it led me to do the magical work that I do with people with brain injuries and other disabilities in my community.

Today, I am proud to say my girl has grown into a sweet, kindhearted and somewhat independent young woman. She enjoys her volunteer job at the local animal shelter and loves caring for her dog, Emma. I was able to renovate my house a few years ago so that she has her own make shift apartment in my home where she lives with her dog as independently as possible. It has been my goal and focus that she become as self-sufficient as possible, not just for her own well-being but also because the reality is I will not live forever and I want her to either have success in supported living in the community, or be the least big of a burden to one of her brothers should they choose to have her live with them.

She has surpassed so much more than what anyone ever thought she’d be able to do. Of course, this came with decades of advocating, teaching and patience on my part and her willingness to do hard things.

This poem was the game changer for me and our life together navigating one of the hardest forms of parenting. Please feel free to pass this along to another parenting navigating this strange, yet beautiful experience.

Welcome to Holland

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Photo by Michal Knotek on Pexels.com

Follow me for more goodness!

Truth

/ embracingspirit / Leave a comment

Many of you know I have a daughter with a disability. To be specific it is a rare chromosome anomaly with feature of autism and cognitive delay. She is a delight in many ways, but the truth is, many of the “typical” interactions of having a daughter were lost. Out life consisted of therapists, learning to talk and cope and much more.

Having a granddaughter has brought such a joy to my heart through the simple things like painting nails.

While my girl means so much to me, the truth is there is a loss. The honesty in saying that is real. And in that honesty, there is redemption. Her same is Sawyer.

And she loves purple and she loves sparkles.

The Pot (repost)

/ embracingspirit / Leave a comment

This beautiful tale comes from my other, more personal blog but it is worth reading here. Being real and raw can invite such a healing.

For many, many years I have often thought of my internal state being that of a boiling pot of water.  Sometimes the water simmers and sometimes it is a raging boil.  The lid may slip off from time to time to allow some steam to release but for the most part I have keep the lid tightly sealed.

A lifetime of experiences and years of conscious choices to see the good and the potential in all situations has served me well and yet, the boiling water remained.  Always there under the surface of acceptance and gratitude.

Disability. Autism. Fear. Shame. Conditional love. Solitude. Survival. Abandonment. Fatigue. Gut-wrenching sadness. Grief.

Recently the day came when the pot erupted into an over-boil and the water scalded me and the all that raged inside me.  As if I was taking the lid off and pouring the wretched water out, I stepped into the deepest darkest caverns of my soul. I allowed any and all emotions to flood out as I poured this enormous pot of water out. Hot and blistering in its sensation, I conceded to its pain.

I cried. I sobbed. I yelled. I stomped.

I questioned God.

And then I withdrew into the emptiness of a pot no longer holding a lifetime of pain.  I sat in the stillness of a depleted and vacant space within my soul. Weakened by the rage and invigorated by the freedom of no longer holding the lid on tight, I felt empty.

In the space of barren feelings, I realized that being pissed off at the cards I was dealt is okay.  Certainly seeing the good in what the cards have offered me is healthy and a beautiful practice that I enjoy living, but denying myself to feel the pain has been destructive.  No more.

The vessel is dry and awaits to be filled with love and happiness.

Freedom

/ embracingspirit / Leave a comment

We have all heard of the metaphors of feeling stuck in a cage and not able to be free to fly, or the imprisoning walls that have been built around us. The brick and mortar is often what we place around ourselves that create our own version of prison.  These can include negativity, questions of worthiness, regrets of the past and worries of the future. Similarly the key to the cage that we so often feel trapped in resides in our own hands. It is our choice to stay in the cage or take the key and unlock it.  No matter what circumstance we are in, we ultimately have choice in what we do with it.

We are not our circumstances, instead we are our possibilities. 

As I was planning this month’s classes around the concept of freedom and being liberated, I received a message from a dear friend whose young daughter was just diagnosed with autism. Heartbreaking as those initial words were, I saw within a few short days a woman take on this experience like that of a true champion.  Sure, she cried her eyes out and felt fear for the unknown.  We all do when we hear those words.  The first thing I did was send her the Welcome to Holland Poem.  Then we talked awhile about what may lie ahead as she leaned on my experience to help her navigate the first few steps on this new and scary journey. Then she got busy.

She certainly could have felt like this news was a giant reason to give up and stay stuck.  Many do.  She however, in her warrior spirit, immediately saw a need to advocate and start asking questions about services and community integration for her sweet little girl.  She took this as a chance to make a difference in the lives of her daughter and others.

That is what freedom is.

Freedom is defined as the power or right to act, speak, or think as one wants without hindrance or restraint. My friend refuses to feel imprisoned by this diagnosis and she will use the power of her light to act and speak without restraint.

This is just one of a million examples of how we can feel stuck, trapped, locked in, or caged.  Whether it is a relationship, a job, a location or a belief you have about yourself, WE have the power to act, speak and think without restraint and hindrance.  We are in control of what we do with our circumstances.

Do you feel imprisoned?  Are you the one laying the bricks down and filling them with mortar?  Do you hold the key in your hand and refuse to unlock the door?

What would freedom feel like? This month we are going to chisel away the beliefs and fear that build a wall around ourselves.  We are going to slip the key into the lock and learn to fly. We are going to feel free.

Screen Shot 2019-07-04 at 3.37.38 PM.png