Category: Parenting

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

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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.

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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.  

JS

Navigating Diagnosis; Again.

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Nothing prepares you to receive a diagnosis for your child. No amount of Google searching. No in-depth conversations reliving every single milestone in your young child’s life. No “just give me a sign” plea to the higher power in your life.

Nothing prepares you for the moment that a doctor sits across from you and changes your life with 7 words.

7 words you probably already knew were true.  7 words you spent countless nights wishing away. 7 words you feared. 7 words your ran from. 7 words you will never un-hear. Just 7 little words.

“Your son is on the autism spectrum.”

You look at your child a million different ways. From a million different perspectives. You look from top to bottom; inside out. And each and every time you change your angle, you will see the same thing. You see your child.

You see the physical traits. You see the behaviors. You see their emotional and physical responses to new situations. You see the facial expressions that tell you what kind of mood they are in. You see the preferences they are developing. You start to learn their triggers. The things in their path that pull them of course.

You look at your child and you see them for all that they have ever been; yours. All of them. Even the parts you wish you could heal. Even the pieces that you know might never fit. Even the parts that scare you.The parts you do not understand.

And then all the sudden someone else sits before you and your child. Someone who has only seen a small fraction of all the moments you hold so dear. Someone who will never know all the layers of your child. All the expressions and traits and behaviors.  That person sits before you and they change your world. They tell you that your child; the one who’s heart first beat from inside of you, is different from you in a way that you cannot change. In a way that you cannot begin to understand.

And for just a moment you stare back at the doctor as if they are a thief. As if they have just stolen something from you. Something that was yours; more than anything else has ever been yours before.  They strip you of everything you thought you knew and replace it with an uncomfortable blank slate. An empty slate. A new beginning in a foreign land.

My son was two-year-old when he first received his autism diagnosis. Every single day of the last four years we have navigated this foreign land. Using only the diagnosis as our guide, we walk this journey.

And I keep waiting for it to feel familiar. To find comfort in this never-ending journey. A journey we learn a little more about every single day.

But the comfort does not come. The familiarity does not set in. Each day feels as new as the last. Filled with uncertainty and fear and just a little bit of wonder. Something new awaits us around every twist and turn. And there are not road signs on this journey. No warnings of what might lie ahead.

Almost four years to the day from the autism diagnosis I found myself, as I often do, sitting before a medical team. And, I should have sensed the familiarity. I should have been comforted by past experiences. I should have recognized it sooner.

I did not.

I sat in an unfamiliar-familiar place and heard 7 little words. 7 new words. 7 words with a just a little bit of nostalgia. 7 words that would further complicate an already complicated journey. 7 words that will change our course. Again.  7 little words.

“Your son has a dual diagnosis; ADHD.”

I still look at my child and see the only thing that that has every really mattered. He is mine. He is mine more than anything has ever been mine. He is mine. His autism is mine. His ADHD is mine. Every piece of this beautifully complex person is mine.

And so we turn the page. A new beginning in a foreign land.

JS

Somewhere in the middle…

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Life has been a little messy lately. Actually, life has been a lot messy lately. And…I have no idea why I just tried to filter my mess for you. I am not sure why I felt the need to try to make it a little more presentable for you. My mess is my mess. And, I did not come here to apologize for it. I came here to own it. I came here to tell you that even though my life is messy; it is still my life. My beautiful, messy, imperfectly, perfect life. And, I know life won’t always be so messy. I know the mess will rise and fall over and over again. And, I know that I will rise and fall with it.

I know I am not the only one who knows what it feels like to live inside the messiness of a life. I am talking to you. The people doing the best they can to put one foot in front of the other. To smile. To embrace the moment. To create joy and memories. To quiet the fears. To overcome the feelings of worry that hold us down. That fill our brains. That threaten to take us over. To work through the mess one day at a time. To fight the urge to quit. To give into the mess.

Life has been messy for a while now. After a fantastic year of progress and growth and HUGE academic gains; things came to a screeching (and untimely) stop in September. We started to see major regressions in my six-year-old son’s autism behaviors. We found ourselves caught completely off guard.

Shame. On. Us.

It is my job along this journey to hold on tightly to reality. To be a constant reminder to myself of the pain and hardship that we have experienced throughout the course of my son’s diagnosis. To focus on the present and future, but to remember the past. I have always thought of this as a survival tactic along this journey. Being a parent to a child on the spectrum means that you constantly live in a state of pivot; ever-ready to change directions on a dime. And this is always something that I have been really good at.

But our last good stretch was just a little too good. And, just a little too long. And somewhere along the way I stopped looking at life as “before” and “after” diagnosis. Life just started to be life again. And I cannot tell you how incredible that felt.

We were going places and doing things that we never dreamed we could do. We were braver and bolder than we had ever been as parents. We were living a life without boundaries. Without limitations. We were free.

Except we weren’t. Not really. Because you cannot be free from a life sentence. Autism is not something that you get to walk away from. It ebbs and flows. It gives and takes. It inside outs and upside downs. It moves in a million different directions at a million different speeds. But it does not stop. It never stops.

And for just a while I forgot that. And remembering was like living through diagnosis all over again. One reminder after another that we are not free. That we are, and always will be, living in the “after diagnosis” phase of life.

We had to learn a lot of things over again. We started to remember what it felt like to say no to things because we just weren’t up for it. We started to wonder if the entire life we built would start to unravel one piece at a time. We watched as autism moved back into the center of our life. And we were so angry. We were bitter. We were filled with resentment. We were all the things you would expect to be when you falsely believe you have beaten something that you can never beat.

So here we are. On a journey we will never understand. And even though this journey is familiar; the course is brand new.

Six-year-old autism looks A LOT different than three-year-old autism. Have you ever met a six-year-old? So bold and steadfast in who they are; yet wildly uncertain and terrified at the same time. Filled with new and powerful language (thank you very much recess chatter). Change moving through their bodies and their brains faster than they can begin to understand. Six is really the first year of being a “big kid”. And new to the big kid world they start to test boundaries and push the limits. A collective army of little people on the brink of becoming who they will be.

Six-year-old autism looks like all of that. And so much more. Six-year-old autism is filled with new physical sensations and experiences. The first time my son lost a tooth he walked out in the morning and I said, “I have a wiggly tooth.” Until that moment I didn’t even know for certain that he knew what that meant. Four minutes later his tooth literally fell out of his mouth. I am sure that tooth had been wiggly for days, maybe weeks. But six-year-old autism did not know how to share that information. He experienced all of the sensations of his first wiggly tooth. And I never even knew about it.

Six-year-old autism is also filled with so many new emotions; BIG emotions. Happy times are a little more happy. Hurt feelings hurt a little more deeply. New adventures are a little more adventurous.

And six-year-old autism is even louder than three-year-old autism; I truly did not think that was possible. And, man is it stronger. I have been on the wrong side of a meltdown enough times to tell you, that six-year-old autism is not messing around. It is strong and loud and tough and fast. And six-year-old autism is scared. Scared of the new feelings and emotions and sensations it does not understand. Filled with language, but still figuring out communication.

So here I am. 4 years post diagnosis and just as uncertain as ever. Doing the best I can to navigate the messiness in this place. This moment in time. This stop on a journey that has no end. And, there is a lot more to this story. There are a lot more stories to tell. And I am so beyond happy to be back in this space sharing our stories.

JS

How to explain autism to children?

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img_1179How to explain autism to children? I end this sentence with a question mark for a very good reason. This is a question I ask myself every single day. I see my little boy wanting to socialize appropriately with his peers. We work diligently to implement strategies and interventions to help him work through his obstacles.

But, there is only so much we can do. At the end of the day it is just my wonderfully unique and complex son out there in the world. Desperately seeking connections and friends and social interactions. And, he is struggling. He is struggling to make connections.  Struggling to interact appropriately. Desperate for friends and social interactions, and struggling.

I wish I could come into this space and tell you that I have all of the answers. The truth is that I not sure I will ever know everything there is to know. Autism is interesting that way, just when you think you have it all figured out…everything changes.

I promised myself that I would push forward on this journey. Even in moments when I wanted to run away. And, with that promise in my mind and in my heart I will do my very best replace that question mark with a period.

How to explain autism to children.

Be honest. Children are so smart and so aware of the world happening around them. Every day they are watching the things that we do and say. The way we treat people. Our words have so much power to influence the little people in our lives. Sometimes parents struggle to determine how to talk to children about things that are difficult. When it comes to talking to our children about difference and their friends with special needs it is so important to be honest. If we are not honest, our children will not learn what they need to from us. They will look for answers to their questions in other places. And, in doing so we will lose our control over the information they receive. When we talk to our children in a real and honest way we send a message that it is ok to talk about things that are difficult.

Use age appropriate language. Sometimes we get so caught up in the life that is happening all around us that we forget all of the wonder and naivety of being a child. Too many times we fill their little heads with words and experiences that are far too mature for their comprehension. I believe that there is a way to talk in a real way about children with special needs without crossing that line. Children have an amazing capacity to rise to the occasion. Understand that your child is already picking up on the differences between themselves and their peers or their siblings. It is our job as parents to help explain the differences to them in a way that provides them with information and also helps to calm their fears. Many times children react a certain way to their peers with a special needs because they do not understand the difference. We can help them understand.

Make it a two-way conversation. Let you child ask questions, but do not be afraid to ask questions to help guide the conversation. Kids have this amazing ability to pick up on all of the insightful things happening around them in the world…and then completely forget about them 4 minutes later. Sometimes your child will not come right out and talk to you about their friend with special needs. They may not tell you that their classmate is knocking over their Legos and that it is making them mad. They may not let you know that their special friend does not answer them when they ask him questions. The may forget that earlier in the day they were sad because their classmate started yelling in the middle of class for no reason. If you ask them questions they will remember and they will talk to you. Ask questions that help them understand the larger concept of “difference” as well as the smaller occurrences of day to day differences between them and their special friends.

Keep the conversation going. This will not be just one conversation that you have and then check off a list. The significant prevalence of bullying is an indication that we need to be talking to our kids about difference and acceptance all of the time. Even if we believe that our kids understand our message. Even if we believe that our children are good and kind kids. Even if we see our children be-friending children with special needs. There is never “enough” when it comes to helping our kids understand the importance and the power of using theirs words for good. As our children get older the conversations will evolve. At age 4 kids may openly embrace their peers with special needs. But, as they grow older the circumstances will change. The peer pressures will influence them. The conversation may change, but the message will stay the same: show kindness to all people. Show them tolerance. Accept their differences. Accept them.

img_0861I do these things in my own home each day. I ask my youngest son how he feels when his brother yells or hits or slams the door. Sometimes he tells me that he feels scared or angry. Sometimes he does not say anything at all. Sometimes he cries. Sometimes he laughs and says “silly Gray.” The reality is that my youngest son is 2. He may not understand exactly what is happening in our home, but he is old enough and smart enough to notice the differences between him and his brother. So we talk to him about that difference.

If you are not sure where to begin, that is ok. I didn’t either when I started. Talking about things that are hard in a real way is difficult for adults. It is even harder when we are talking to our children. So, one day at a time I found opportunities to talk about the difference we experience at home. And the difference my children will experience in the world.

IMG_0767.jpgWhen we are in social settings with friends I often find myself explaining Grayson’s behaviors to other children. And, when I look around the parent is looking at me eager to hear my words. Eager to learn. To know what to say. Looking for permission and guidance. To those parents I may appear confident in my message. I am not. Inside my heart is breaking to have this conversation over and over again. But I will have that conversation as many times as it takes to help us along this journey. To help Grayson find his place in the world.

Talk to your children about difference. Help your child understand their special friends and all of the magic they bring into the world!

– Grayson’s Mommy