My Worlds

I came home late from a movie last night and entered a quiet house with a sleeping family. I went to bed where my place is these days. I fell asleep in Charlie's room on one half of the trundle bed while my husband and son slept in a play tent perched atop the other half. My Dowlan's long legs were poking out the doorway and on to the rest of the bed and I reached my arm through the canvas window opening to hold his hand for the night.

That's how life is as Charlie's mom--I live half in one world, but with one arm and one heart reaching into another.

The movie I watched was the documentary The Horse Boy, about a family whose child Rowan has autism. They live out in a small town near here, neighboring farm homes with horses. It was on the neighbor's horse Betsy that he first calmed down, first spoke, first started to make a connection between his world and ours. His dad's work had brought him to defend shamans of African tribes who were fighting to keep their homes from becoming diamond mines, and they found that being near the shamans impacted him in ways similar to riding the horse Betsy.

Frustrated by the lack of progress through conventional means, the Isaacson family flew halfway around the world with their tantruming, barely-verbal child to take him on a journey to Mongolia--where horses were first domesticated and where Shamanism is the state religion. They rode horses up mountains to visit shamans and reconcile with the spirit world. They went to visit a tribe of nomadic reindeer herders in Siberia. And, along the way, Rowan was transformed.

I choose transformed instead of cured because Rowan is still a child with autism. But he made great strides like making his first friend and playing with other children, finally embracing using the toilet and becoming substantially more verbal and functional. In the years since this breakthrough, he has continued to progress.

Throughout the film, I kept viewing scenes of our own life. Of the time Charlie made a friend on the McDonald's playground because Baby Dragon made a Frog friend and, after practicing Friends with Baby Dragon for quite some time, he finally thought to go up to another child and interact. The time Charlie first realized that he could use words to his benefit after playing Mama Kitty and Baby Kitty on the floor for weeks and seeing that Baby Kitty could use words as a means to an end.

I also saw the back-arching tantrums on the screen and remembered time after time of being whacked in the head trying to subdue an overstimulated boy. Seeing him play with toy animals through scared rituals brought to mind scenes of LarryBoy saving the day in what were supposed to be quiet moments in church. I saw the careworn faces of Charlie's parents reflected on the screen in Rowan's parents. Their joys, their griefs, their agonies were too familiar, but I saw that there is a way through this journey, one with their marriage and family intact. It just has to be a different journey than I ever imagined.

At the same time, I am trying to navigate Dixie's headstrong and oft-errant path and help her to accept that she is loved beyond measure in the home she belongs in. Sweet baby girl still has so much pain that I can't snuggle away. She tries to fill the hole in her heart left by her first mama in so many ways that only seem to make it bigger. She has come so very, very far in the two years and 9 months in our home, but still has quiet the journey ahead.

And Miss Melody, who is so precious, feisty and sweet that she could be my whole world. She is a novel unto herself.

I clearly have no intention of riding wild horses or visiting old feather-donned, drum-banging men in tents. But I do know that Charlie's journey to emerge from his world enough to function in this one is going to be an unconventional pathway that will be led by him, in his way. I know that my job as his mother is to sleep with one arm and one heart in the tent, waiting for him to be ready, and diving in to connect with him along the way.


Lori said...


Lisa said...

Gretchen, I rarely post, but read often. This so touches my heart. We have a little guy who was once diagnosed with PDD-NOS--we worked crazy super hard and had him re-evaluated almost 2.5 years later and he lost that diagnosis. I so know how you feel, the frustration, the meltdowns, the not being able to communicate, feeling so unsure of what you are doing. Just know that it can and does get better :-) It won't be easy, but you can do it--I promise!

Rowdy Girls Mama said...

beautifully stated... we're walking a different path than we imagined, as well, visiting Holland instead of Italy, so to speak. http://www.our-kids.org/Archives/Holland.html
But it's lovely here.

Tracy said...

So beautiful.

Kristin said...

It's hard here in this strange world especially with other families.

My oldest who has Autism is extremely high functioning. If we happen to meet another child with Autism, she is, almost always without exception, the more high functioning.

Yet, when we spend time with typical kids, her defecits are striking. It is obvious, within about 4 minutes, that she is different.

It can be lonely in this in between world.