Category: Autism Awareness

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.

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

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