Autism Awareness Day 2017

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I wanted to say a special THANK YOU today, on International Autism Awareness Day, to all the beautiful souls touched by this “label”. It is especially (ironically) fitting for me this weekend, when I personally was touched and blessed by some such beautiful souls.

A THANK YOU to the kind, loving, patient boy who spent 3 hours swimming around the pool with my son yesterday at a pool party. My 6-year-old son was surrounded by a dozen fun loving 11-year-old girls who (understandably) wanted nothing to do with him, so my son put on his snorkel/mask/fins (doesn’t everyone bring these to a pool party?) and swam around, on top of, and next to this kind boy who befriended him and became his “person” for the rest of the party. My son didn’t know this boy was “different”. But he did know he was kind.

A THANK YOU to the beautiful, compassionate, joyful girl today who saw my son struggling to fit in with his peer group at a big, busy social event, and took him under her wing and invited him to play and tag along with her. He was thrilled to find a kind soul to relate to and belong with.

See my son is 6 years old, and doesn’t know what autism is. He is innocent so far and hasn’t needed to see these “differences” among people, differences that require “labels”. He himself (or is it me? Or the rest of us?) struggles with his own set of labels. Highly sensitive. Highly spirited. High needs. He dances to the beat of a different drum himself, and not a day goes by for me that I don’t wonder to myself “Did I miss something? Is he on the spectrum?”. But the better question is aren’t we ALL on the spectrum somewhere or other? It’s a damn SPECTRUM after all, with a hugely wide range of colors and shapes and sounds. And doesn’t that placement on the spectrum change as we navigate life with our own highs and lows, stressful and peaceful periods, struggling and being ostracized at times and at others fitting in quite well?

So THANK YOU to you, beautiful souls. To your kindness, compassion, and uniqueness. The world is a more beautiful, colorful place thanks to you. And a huge THANK YOU to the parents…who tirelessly teach, model, and repeat the same phrase 56,432 times in hopes this time it will stick….your diligence and love does not go unnoticed. Your work is so hard, so important, and I admire you.

THANK YOU.

The Highly Sensitive Gardeners

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Gardening to me is therapeutic. I love being outside surrounded by nature, feeling with wind, the sun, and the soil between my fingers. Planting seeds, or a tiny plant, is like the opportunity to aid in bringing forth new life into this world. You plant them, nurture them, tend to them, and wait, wondering what exactly will come of the hard work and love that you’ve put into the process.

My 4 year old son and I often garden together. We prune the flower beds, cut off the dying flowers, and pull out roots and stems that are way too far gone.

“Mom, this branch says ‘No!!!! Ouchy!!!! Don’t pull me out!!!’ and this other one says ‘Help me! I need more water please!’.”

I can’t help but smile at hearing the dialogue that his vivid imagination creates for the things around him who cannot speak (out loud) for themselves. What a beautiful thing it is to be that in tune with your surroundings that you feel what they feel. I think back to last summer when we first planted these very same flowers that we care for today, when they were teeny, tiny plants. We dug holes together, and he insisted we relocate every earthworm we came across. He said the worms were scared and needed a new home deep underground, not too far away, so they’d be safe and happy.

And although many times, hearing his words, the intensity of how much he feels things is a beautiful thing, at times it feels like both a blessing and a curse. You see, my son is not only highly sensitive, but also highly spirited (i.e. more stubborn, determined, and strong willed than any MLM salesperson you ever met, but in a tiny person’s body with huge lungs). I was able to recognize it pretty early on in his life because I am also highly sensitive.

I struggled most of my life, not knowing why I was “different”. Why each seemingly little hurt, each little disappointment to me took on a giant emotional gorge in my heart. I can remember as early as kindergarten feeling like I just couldn’t fit in. Throughout grade school, I was always the youngest in my class, the most timid, and the most emotional. The lyrics to a song could easily make me cry, heck even the beauty in a symphonic piece with no lyrics could bring me to tears. I was sure something was terribly wrong with me since everyone around me seemed so happy and so care-free. It wasn’t until my adult life and many years of researching and soul searching that I found a name for what I was, highly sensitive. It was a beautiful moment because finally I knew I was not broken, crazy, or alone. I just felt everything “more”. I learned to understand it, accept it, embrace it, and learned how to better deal with life and it’s situations as a result.

With my son, I suspected very early on he had inherited my sensitivity, which as a child, usually also comes coupled with sensory processing issues. He started off his life with horrific reflux, so pretty much from birth if he was awake, he was screaming. Like bloody-murder-somebody-please-save-me screaming. Feeding him took lots of emotional preparation. I recall one of our first outings as a “new family” to McDonald’s (don’t judge, we made it out of the house after our first week, that was huge for us): He was starving, but when he would drink from the bottle (as breastfeeding did not work out despite my very best efforts, but that’s a post for another day). He would arch his back, pull off from the bottle and scream as if we were pouring hot lava down his tiny developing throat. This would happen every time we fed him. Repeat this process every 3 hours ’round the clock. We couldn’t go out if we would be out and about during a feeding, as his screams could clear a room, and break the heart of any mother in a 2 block radius. Finally, around week 7, and after numerous doctor’s visits, failed medications, fights on the phone begging with insurance companies, etc. we had a “cure” that worked, and it was like a huge weight was lifted. We were finally able to enjoy our baby.

But that was just one tiny piece of the sensitivity puzzle. The world for him was often times too much, too overwhelming in general. He had to be worn in a sling or wrap all the time to feel safe. There was a vigorous rocking-chair-motion and shushing required to get him to sleep early on that even Dr. Harvey Karp would be proud of. Eventually, when he was old enough to watch some hard-core television (after, of course, the magical age of 2 years old when the “experts” deem it safe to expose our young susceptible children to the evils of television), the slightest hint of Thomas the Tank engine making a bad decision to play for a little while longer instead of getting back to work and chugging his cargo back to Tidmouth Sheds would cause my son to hide his eyes in terror, or run out of the room in tears to hide. There was a time, for years (yes YEARS) that the only way he could sleep was on top of me. Like lying vertically on my chest. Like nonstop, all night. It was the only way he felt “safe” enough to allow sleep to take over. To this day, at 4+ years and 40+ pounds, almost every night when I put him to sleep he requests a few minutes of snuggle time with him laying on top of me. Mind you, at this point his body is almost longer than mine. But when he does this, he snuggles in like finally all is right in the world, and its okay to relax.

The flip side of the sensitivity coin is the amazing compassion and kindness he feels towards even the tiniest living creature. How he will go out of his way when riding his bicycle to avoid crushing the myriad of earthworms that have somehow made their way to the center of the sidewalk. How a song can touch him so much that he will cry big, fat, silent tears, or ask me to please change the station because it is too much. How something as simple as dancing to a great song, or blowing dandelions, or riding on any type of public transportation can make his day completely perfect. His squeals of joy are as loud or if not louder than his shouts of discomfort.

I explain all this, the good and the bad, the joy and the pain, the duality of it all because raising a highly sensitive/highly spirited child is beyond hard. Beyond exhausting. And is probably something that is nearly impossible for anyone who is a) not highly sensitive or highly spirited, or b) not the parent of a highly sensitive or highly spirited child to understand.

Life for us HSC’s or parents of HSC’s is different. We are faced day in and day out with situations that for you, may require redirection, a stern look, or a firm “No”. But for us, it can escalate to World War 3 in a heartbeat because they are feeling completely overwhelmed and misunderstood. We have to parent these beings differently to make it work. Every transition is carefully planned out & announced multiple times in advance, every outing thoughtfully prepared so we have the right emergency food, drink, or toy. A neuro-typical person might see a child crying and throwing a fit, being a brat because he doesn’t want to walk from the shore of the beach to the sidewalk. To a highly sensitive child, the feel of the hot, wet sand stuck to his feet while it rubs against his shoes like scalding sandpaper is a sensation so overwhelming it can push him over the brink into the red zone. And because of this, sometimes you judge us. I know you do. Sometimes silently. Sometimes out loud. Sometimes to our face. Sometimes behind our backs. And I get it. Because you haven’t lived it. You have no idea what it’s like to deal with that kind of intensity nonstop, with the crazy situations that most people cannot fathom or understand. You look at us as if we have three heads when we negotiate or try to explain our way through a difficult situation. But we do this because we know this is the way it must be done in order for them to understand and feel understood, and for us to try and maintain our sanity. And the “Thank you, mama” in that tiny voice I get, accompanied with a gigantic bear hug that could crush my ribs when I do understand, stay calm, get it right and work with his sensitivities instead of dismissing them as nonsense let me know how integral it is to his sense of self-worth, sense of stability, sense of “this world is actually a safe place to be in after all”.

So please, next time when you feel that judgment creep in, take a moment and pause, and remember our experience is different than yours.

My heart breaks a little for him for all the times I know people will deal with him in ways that will do more harm than good, for both their sakes. I know I can’t protect him from it all, nor should I. So I don’t. But we talk about it a lot. I strive to make him self-aware of his own needs, and work on expressing them in ways that are socially acceptable. I know as he grows and matures, things will get easier for us all. Not easy, but easier. I know these traits he has can and will be honed in to something amazing, and he will one day discover a new planet or design and build a new technology racecar/rocket ship hybrid. His intensity and focus will be used for the powers of good and the advancement of humanity. It’s just for now, he’s 4. And for now, it translates into him obsessing over that one toy that the one kid on the playground has that he wants to take a turn with soooooo badly, and that he will cry about, tantrum about, plead about 100 gazillion times “But WHEN will it be my turn?!?!” And this can go on for hours, and leave an emotional mark for days, or even months. Like an elephant that never forgets.

Time and patience and teaching are the solution. There are no short cuts for us on this journey that will not backfire if we try to take them.

So for now, we garden. And relocate worms, and listen to the sounds & words of nature and flowers, and laugh and breathe get through the rough patches. I have learned to appreciate all the facets of this unique type of personality. I have learned to appreciate his extreme sweetness, as well as his extreme determination when he is so engrossed in the task at hand that he literally can’t even hear me asking him to put on his shoes or brush his teeth. I appreciate his “more-ness”. And as usual, it makes me wonder, who is the teacher here and who is the student?