What You Don’t Know About High-Functioning Autism.

High-functioning autism is like the wind. Much of the time it is calm and unnoticeable. But it can change in an instant. Before you know it things around you begin to swirl. The contents of your life are lifted and tossed around with no effort at all. Shaken.

Sometimes the wind is quick; a burst of destruction before moving on. Other times the wind lingers; a chill in the air effecting the people and things in its path.

And then, the wind settles.  Nothing is as it was before. Everything is changed. Different, but the same. And so, you go on. Learning to accept things the way they have landed. Waiting. Waiting for the next gust. 

This is how we have come to know life. And most days we understand that this is all a part of the journey. We have learned to make space for autism in our life; to let it come and go. In a way I still do not fully understand, we are being raised by autism. Learning and adapting to every new normal along the way.  

But this I know for certain; our normal is anything but. 

I know when you look at my son you see something that your brain tells you is “naughty”. If you walk by us on the street you may see my son screaming and yelling. You may see him swearing and using inappropriate words. You may see him hitting or kicking or spitting. You will see all the telltale signs of naughtiness. You will see a red face. And angered scowl. An elevated tone. It would be easy to conclude that he is a naughty kid. A kid whose parents are not teaching him how to be “good.”

What you will not see is the storm brewing below the surface. The conflicting tornadic funnels of autism and ADHD. On one side the instinct to overthink and obsess, and on the other side the need to move unpredictably without care. Methodical and erratic. Soft and loud. Slow and fast. Steady and sporadic. Unimageable opposition all swirling around inside of this beautiful ten year old boy. 

What you will not see is the work we all do each and every day. The doctors and therapy. The schedules and medications. The rewards and consequences to help track every inch of our progress. The somber conversations at the end of a hard day evaluating the next course forward. The celebrations when we achieve even the smallest success.

High-functioning autism might look like naughty. But it could not be further from the truth. There is a saying that I turn to in my darkest moments: “my child is not giving me a hard time; my child is having a hard time.”

Inside of this tiny little person battling multiple social emotional disorders is the kindest soul you will ever know. He is navigating high-functioning autism every single day. And, some days are better than others.

I wish I could release a forcefield of protection around him every time he leaves the house. But I cannot do that. Instead I just have to live inside of the hope that people in the world instinctually want to be good. And maybe if they knew more, his road ahead could be a little less filled with challenge.

This is what I want you to know, what I want the world to know, about high-functioning autism.

High-functioning autism is not naughty.

It is on the surface looking just like everyone else around you, but holding so much difference inside below the surface.

It is knowing the words to explain your feelings, but never being able to use them just right.

It is a deep yearning for social interaction, but a lack of natural ability to act on those urges.

It is working up the courage to join in, only to be left out for acting “weird”.

It is having a brain that most people cannot understand.

It is having an outburst at your friends because they cannot see something the way that you see it.

It is never being able to explain things the exact way you experience the world.

It is seeking order and systems that make people around you feel uncomfortable.

It is needing extra support at school, but not wanting to look different in front of peers.

It is big emotions in all directions; happiness, excitement, sadness, anger, fear.

It is an acceptance deep inside of you that you are different, without ever understanding why.

Being kind, truly kind, means looking below the surface. It is not just the act of saying “be kind” it is the act of living kindly. It is accepting that there is always more than meets the eye. It is giving grace even when it feels un-natural. It is seeing a “naughty” child and considering that there may be more to the story. It is being grateful for what we have in this world; and considering others who are less fortunate.

Kindness is a deep commitment to continue learning. And if you learn anything from my words today let it be this; high-functioning autism is not naughty.

The next time you pass a child on the street, red-faced and filled with anger, do not judge. Instead, consider giving the parent a smile in kindness before moving along.

Moms Struggle to “Live Our Best Lives”; and This is Why.

The advice for moms in never-ending. Bits of shared wisdom to navigate through the blissful chaos that is motherhood. And, there is no shortage of popular adages to guide us along the way.

All day long my social media feeds encourage me to “live my best life”. I was raised with the good sense to “work hard and play hard!” My mom always reminded me, “you can’t dance if you don’t pay the band”. My fitness blogs and coaches challenge me to tell them, “what I did today that was just for me.” Even from the very first time I picked up a maternity book I read, “you cannot take care of your family, if you do not first take care yourself.”

As moms we work tirelessly to provide love and light to everyone.  We watch as the seeds of our life bloom around us. Children. Husband. Career. Friendship. Faith. Philanthropy. Creativity. Health. Financial Stability. The list goes on and on.

We are smart, intentional women. We know that life is all about balance. We know that in order to be great moms; we need to be great women first. Women who are strong. Women who embrace life. Women who take risks. Women who create boundaries and break through them in equal measure.

And so we move through our daily routines in search of balance. We learn to balance pick-up lines, and home work, and lunches, and laundry, and school theme days, and endless mountains of paperwork, and long days in the office, and nights filled with emotional hurdles, and juggling financial woes, and last minute trips to the grocery store because we just found out we need to send 16 snacks that start with the letter “K” to school the next day.

Just when we think we cannot pile one more thing on; we redistribute everything to pile on even more. And somehow, we convince ourselves that this constant redistribution of the load we carry is helping us to achieve balance.

And this stuff is heavy!  Sure, there are physically heavy things. Like carrying 2 backpacks, 2 lunch boxes, the rhyme box, the nightly reading bag, and any number of discarded clothing items to the car at the end of the school day. And not because they asked nicely. Because they walked out of the school and dropped it all at our feet.

But some of the heaviest things are not “things” at all. I am talking about the emotional load. The never-ending list of fears and worries that run through our brains in the middle of night. The panic that sets in when we forget something on the to do list.  The anxiety we feel over constantly questioning the decisions we make.

Did I pack the right food for lunch today? Did I remember to send in the permission slip? Do I spend enough time reading with my child? Is it gym or art today? Do we have any pants without holes in knees?  Should I be worried that my child only eats 5 foods? Did I remember to schedule a sitter for my meeting on Thursday? When was my last doctor appointment? If my youngest is 5, can I still go to my OBGYN? What is the temperature going to be tomorrow? How many arguments will we have trying to get everyone out the door in the morning? Do I still send my kid to school in boots when the snow is melted but the ground is wet?

I mean, that last one sounds ridiculous. But seriously, do I?

I ask myself these questions and a million more. Usually around 2 o’clock in the morning. I give myself a hard time when my child’s birthday passes and 2 weeks after I still have not gotten into the pediatrician. I update and edit the family calendar so many times in a week that I am blue in the face. Some nights I stand in front of the refrigerator and think about how much easier it would be to just go to bed and skip dinner. But I cannot do that. Because if I go to bed then the to do list will only get longer.

We are in the messy, middle part of life. Our kiddos are somewhere between the adorable newborn phase and mature self-sufficiency phase. And from what I can tell this messy middle might last anywhere from 7-25 years. And right now that sounds like a really long time.

So what is a mom to do?

Some days I take more deep sighs then I am comfortable admitting. Some days we far exceed our screen time limits. Some days I put on my biggest sunglasses and hide my tears from the world. Some days I turn up the 90s rap music so loudly in the car that my windows shake. And some days none of that is enough. Because some days I just need a break.

But as any mom alongside you in this messy middle will tell you; the break is never stronger than the bite. You know, the reality bite that is waiting for you after your break. The overly emotional children. The back log of to do items. The exasperating feeling of being two (or two hundred) steps behind. The constant feeling of being punished for taking some time away for yourself. Because in the messy middle your life is not your own. In the messy middle too often moms are living life for everyone around them first.

I do not see a lot of moms in the messy middle living their best life. Even if social media occasionally makes it look all “rosé all day” and “pink wine in the sunshine.” Reality looks a little more like this; “tantrums all day” and “too much whine and whipping someone else’s behind.”

So, I may not be “living my best life.” My days with giant straw hats on expansive beaches may be few and far between. My moments on the town may be restricted to occasional weekend nights between the hours of 6 and 10pm. But in this messy middle phase of life; it is ok to live a “best I can do for now life.”

Because remember, it is all about balance. And even though I may be failing desperately to achieve balance today; maybe the real balance is still to come. Maybe the real balance is that we live for everyone else in the beginning; and that teaches us to live for ourselves. And the hope of that might just be enough to push me through the next 7-25 years.