My Head Said “Autism”, My Heart said “No”

Along my parenting journey I have gone up against so many moments feeling completely unequipped. The parenting gig is not for the faint of heart. It is a job that is equal parts wonderful and terrifying. It is a responsibility that should be treasured.

The very first moment we stepped out of the hospital with our baby boy I was completely terrified. Were these doctors insane? I could not believe that they just let us walk out of the hospital. They trusted us to raise this child. To feed him. To bathe him. To care for him. To protect him. This task seemed thrilling; and daunting.

You find your super-human-parent-powers from somewhere inside of you that you did not know existed before you had children. They come to you in a moment of need. They give you the energy you need to overcome the exhaustion. The patience you need to overcome the moments you were not prepared for. The love you need to remember that every single crazy second of the journey is so completely worth it. The parenting powers become a part of your identity. You are no longer just a person; you are a mom. A super mom.

Along the way you figure out how to do the parenting thing. Parenthood washes over you in a way that makes you feel as if you have always been doing it.  But, just when you think you have mastered something, life throws you a curve ball. Life is funny that way, ever-eager to keep you on your toes. Pushing you to be better. Stronger. More.

Some of the curve balls roll off of you with ease. Others test you. They push you to your limits. They ask you to be more than you ever dreamed you would need to be. Those become the moments that define your parenthood.

I did not see the autism curve ball coming. Not even a little. My head and my heart worked in opposition to protect me from the reality of our situation. My head said “autism”, but my heart said “no”. And there was just enough uncertainty in the space between the two to keep me safe. To keep me hopeful.

And because my heart could not hear what head had to say, I existed in the space for a long time. I held onto my hopeful heart. I held on until the moment I heard the doctors say out loud the words that I could not; “your son has autism spectrum disorder.”

My heart ached over the loss. The loss of hope. The loss of things that I did not even understand at the time. My head ached too. Filled with information that it did not know how to process. Thankful for an answer, but at a loss for what to do with it. My head and my heart were no longer in opposition, they were both overcome with loss.

I lived in that loss for a long time. I let it come over me in ways that I did not expect. I turned to my super-human-parent-powers, but they too were at a loss. I was not ready to be super-human, being human was all that I could muster.

My powers came back to me slowly. I grew just a little bit stronger with each passing day. In the end it was my love for my son that pulled me back. The passionate fighter inside of me ready to take on whatever lay in my son’s path. I needed to teach my son how to find his own super-human powers. To teach him to be brave. To teach him to endure. To be strong. To fight. To love. To hope. He would need all of those things along his journey. And somehow helping him prepare for his journey helped me to travel further down my own journey.

Some people do not understand why I call our son’s diagnosis “our diagnosis”. I understand how this may not make sense to you. If you have not walked this path then I imagine it would be difficult to understand.

This is our journey. We travel it together. We live through every up and down together. We cry together. We laugh together. We celebrate our wins together. And together we mourn our losses. This is our son’s diagnosis. And, because of our commitment to travel this journey with him; it is our diagnosis too.

To all of you super-human-parents our there; wow. Just wow. It has not been easy. Parenting is the most terrifyingly wonderful experience in this world. It is the most perfect form of chaos. Luckily, managing chaos is on of our powers.

Remember to be in awe of yourself from time to time. I have a feeling you deserve it. I have a feeling we all deserve it.




The Truth About Relationships Along the Spectrum…

postI have been reminded time and time again just how significantly my son’s autism diagnosis impacts the relationships in my life.

I feel the weight of the diagnosis in our life in a lot of ways. But somehow, the impact on the relationships feels the heaviest. It is heavy in a way that is exhausting. Heavy in a way that is sad. Heavy in a way that sometimes is just too much.

In moments of uncertainty I have been overwhelmed by the outpouring of love and support; often in the most unexpected places. In a kind and knowing nod from a fellow mother trudging through her own parenting journey. In a subtle “you got this” text. In an act of kindness by a stranger we encounter out in the world.

And for every moment of love and support, there have been moments of distance and pain.  No one tells you to expect the diagnosis to tear down the relationships in your life. Someone should tell you that. Someone should prepare you for that sadness. For that disappointment. For the loneliness.

In the beginning I believed that our life was just too much for some people to bear.  And, I let that be okay because, quite honestly, a lot of days our life was too much for me to bear. And, if I could not gracefully navigate the ups and downs and curves, then how could I expect the people in my life to do so?

So I made excuses for people. I told myself that it was not personal. I told myself that it was okay for them to be distant. I told myself that I should understand their position. And, so I did. I tried to make it not-personal. I let them be distant.  I searched to understand our life through their eyes. And then one day I realized something important; it was personal, the distance was hurtful, and it was not my job to help them through our diagnosis. It was all I could do each and every day to help myself through it.

When tragedy strikes there is no manual to explain the new rules of engagement. People do the best they can every single day to pick up the pieces of their life and move forward. They look in the face of the obstacles in their way, and the pretend to be strong enough to survive. Because sometimes pretending is a way to survive.

And day by day, surrounded by love and support, we find the strength to stop pretending and to truly face life, in all of the messy imperfect glory, head on. We look around us and we see that our support system has shifted and changed in so many ways over the course of the diagnosis. Of course it did. How could it not?

Our whole life turned upside down. In an instant everything was different, yet somehow exactly the same. People who have gone through something significant will understand what I mean. It feels impossible for the world to keep spinning the same way it always did before. And as impossible as it felt, the world kept spinning. People kept moving forward.

And as I stood still, frozen in the aftermath of the diagnosis, I felt the space between myself and other people grow more distant each day. And because I could not bear the thought of being left behind, frozen and alone, I figured out how to move forward. Slowly at first. Unsure. And then more sure and more steady with each passing day.

There are a lot of days that I am still barely surviving. You look at me from the outside and you may not see that. You do not see that because I do not let you. I need you to see me as strong. As steady. As a person and a mother who is unwavering.  It is something I need so deeply. It gives me faith that one day I will be this person. One day I will be strong and steady and unwavering. But today, today I still waver.

Today, I am held up by the people who remind me in big and small ways that my life will never be too much for them. They give me permission to be weak. They give me allowances when I waver. They love me and embrace my journey. It has become their journey too.

Being in my life means acknowledging the presence of autism. There is just no way around it. It has changed me in ways that I cannot explain. I will not make apologies for it. I will not edit myself and my emotions to make our diagnosis, our life, easier for other people. Loving me means loving all of me. It means embracing us in a way that is real and authentic.

I understand that I am asking a lot of you. Please know that autism has asked a lot of me. More than I thought I could give. More than I thought I could be. But, my son was diagnosed with autism. And loving him means loving  all of him. So I figured out a way to give more. To be more.

I still feel like our life it too much sometimes. I feel the impact of the “too much” on the relationships in my life.  It feels heavy and it feels sad. But,  I am reminded by people all around us that we are not alone. They quiet my fears. They build me up. They show me love. They are my people, and I am so thankful for them.


Explaining Difference to Children: When difference feels scary

Last night was just a simple night at home with my boys. But, as I have learned along the spectrum; many things are so much more than they first seem. It started as a simple night; and it became a night about so much more. Last night I sat down to give my children a bath and I ended up having an important conversation with them about difference.

Earlier in the day Grayson became worked up at the sight of a large spider web in the backyard. Grayson has seen spiders and spider webs before. When you live a mile from a lake you become rather comfortable with the sight of creepy crawlies around your house. In the past the sight of spiders never mattered much to him, but in that instant he was overcome with fear. He grew very emotional; inconsolable. He was scared and sad and he just wanted a break. After a while he calmed down and he moved on from the incident.

Since I was not home during the incident I took bath time as an opportunity to talk to him. I asked Grayson if he saw a spider web outside. He told me “spiders are scary.” I paused for a moment trying to determine my next move. Conversations like this are pretty new, and rare, given his speech delay. I opened my mouth unsure of where the conversation would lead.

I told him that I completely understood that he felt afraid. I told him that mommy feels scared sometimes too. I explained to him that spiders are not really scary, they are just different. And, sometimes, we are scared of things that are different.

I could tell by the look on his face that he was not sold on the concept. So I continued. I explained to Grayson that spiders are different from us in lots of ways. Spiders have 8 legs and we only have 2 legs. Spiders live in webs and we live in houses. Spiders are small and we are big. I told him that spiders are really cool and not very scary at all.

He remained deep in thought for a few minutes. Next to him in the bathtub his little brother twirled around an said “spiders is not scary.” “That’s right!” I exclaimed. “Spiders are not scary, they are different.” Grayson smiled and said “Spiders have 8 legs.”

I am not sure if the concept hit home. The next time Grayson sees a spider he may still run away in fear. He may still cry. He may still feel afraid. The important thing is that I saw an opportunity to talk to my kids in a real way about difference; and I took it.

When my son was first diagnosed with autism, it scared the daylights out of me. I knew very little about autism. And, I knew even less about raising a child with autism. My lack of knowledge and understanding was scary. Today, armed with knowledge and a deeper understanding, autism seems much less scary.

It is never easy to talk about things that scare us. Some things may scare us because they are truly scary. Other things may scare us because we just do not understand them. I want to raise both of my boys to understand that fear is a normal part of life. And, I never want them to feel ashamed or embarrassed about their fears.  But, I also want to raise them to understand their ability to take a deeper look at the things that scare them. I want them to understand the important distinction between scary and different.

My sons autism felt scary; because it was different. He is different. And embracing him, and embracing all of the wonderful difference that he is, helped me to understand that difference is not always scary. The journey is scary because it is unknown. So each day we are trying to know it a little more.

Let’s talk about difference in a real way. Let’s make difference even just a little less scary!

p.s. spiders totally creep me out too!


“I AM ME” – The words of one very smart brother of Autism


I had a simple conversation with my youngest son. It was short and sweet, and by a lot of definitions is was a completely lovely conversation. And, while I should have felt all of those things, this conversation left me with a pit in my stomach. It left me feeling sad. The kind of sadness that washes over you all at once. First you feel overtaken by it. And then slowly it starts to feel less like sadness and more like peace.

It was a sadness that I knew would come. You see, this is a moment that I have been thinking about for a long time. It is a moment that I was told to prepare myself for. As it turns out; there really is no way to prepare yourself for the realization that your two year old son is beginning to surpass the skills of his four year old brother.

That morning as we sat on the couch enjoying cartoons my youngest began to dance around the room narrating the scene: “Mommy is drinking coffee.” And, “There is Grayson. He’s on the couch.” And so I asked, “Where is Rowan?” And he replied, without missing a beat, “I’m right here. Mommy, I am me.”

Such a simple thing to say, “I am me.” Except it is not simple. The concept of “me” is actually really difficult for kids to master. And here is my 2 year old using it like he has been saying it his entire life. I stood in amazement of his ability to correctly use the concepts of here and there. To add an apostrophe “s” to the end of “he”. And to do it all with such courage and conviction. I looked at him in awe; overcome with love and joy. Proud of my smart little man and his beautiful brain. In just a few short sentences he used concepts of speech and language that we have been working on with Grayson for over two years.

I know I should not get hung up on that. We should not compare our children to anyone else. We should embrace each child for all of the amazingness they possess in their tiny bodies. I know all of that in my head. But, my eyes see things that my head protects me from. Other children become mirrors to parents of children living with difference. Mirrors that we cannot avoid. Mirrors that remind us of the reality of our situations. Mirrors that recognize difference. Magnify it.

In the moment just after Rowan spoke, I looked from him to Grayson, and I feel the familiar ping of my fragile mommy heart breaking. You see a mother’s heart breaks for a lot of reasons. Our hearts break when our children are in pain. When our children are without. When we are not in control. Our hearts break for loss. For fear. For the feeling of helplessness. Hopelessness.

And there on that rainy morning, in the comfort of my home, my younger son did something that my older son cannot. And my heart is breaking.

Some time ago I sat with members of our team and we spoke about “emotionally preparing” for this moment. I remember sitting there dumbfounded. How is a mother supposed to prepare for that moment? It was a thought I could barely handle let enter my brain; little alone start to come to terms with it. It was a thought that I started to actively keep out of my brain. I had to protect both my head and my heart from the idea of it. Because I knew, deep down, that no amount of worry or fear or concern would help deflect the intensity of that moment. The pain of that feeling. The harshness of that reality.

That moment finally came. And,  it should have put me into the fetal position. I felt wounded. I felt weak and sad. And, I sat with those feelings and let them wash over me. I felt sadness in the way that I needed to. And then from out of the sadness, came peace.

And, instead of folding myself into bed under the covers, I smiled back at my bold two year old. I looked him in the eyes and I said to him;“That is right, you are you. And, Grayson is Grayson. And daddy is daddy. And, I am me.”

And, that is just the truth. You are you. And, I am me.



“Coming Out” of the Autism Closet

Last year on my birthday I made the very personal decision to “come out” about the presence of autism in our family. Up to that point we shared the information with our family and close friends. But we still kept the diagnosis pretty close to our hip. Everything was still so new to us. We were unsteady in our journey and trying to find our footing. There were still days that left us in tears filled with worry that we were getting it all wrong. Unsure how we would even be able to tell if we were “getting it right”. Improvements and changes were so hard for us to measure. Some days if felt “better”. But better than what? Other days is felt worse. Harder. Hopeless.

Keeping the circle small in the beginning is how we survived. I remember driving home from our diagnosis. We drove the first hour of the journey home from Iowa in complete silence. I took my phone out and began drafting the most difficult message I have ever sent. I confirmed the suspicion that had long been on all of our minds; my Grayson had Autism Spectrum Disorder. I said it then in those text messages and emails to family, friends and co-workers. I said it in writing because I could not say it in words. And over the next few weeks saying it out loud did not get any easier. At a certain point I called on my closest friends and family and asked them to share the news with anyone that needed to know. They loved me enough to do that for me. They loved me enough to know that I could not do that.

We went on like that for a while. I knew and they knew but we were not talking about it. They were waiting for a cue from me and I was way too weak to deliver that cue. We kept it close to us for so long that it began to feel like a dirty secret that we were hiding away; something to be embarrassed or ashamed of. And when I thought about it like that it made the diagnosis seem a lot scarier. I knew that I had to come to grips with Grayson’s diagnosis in a way that would allow us to move forward.

I slowly started to be more open about our autism. I started looking at the diagnosis as a part of our life instead of something that was taking over our life. Even though a lot of the time I felt like I was trying to convince myself of something that did not feel true. The more we talked about autism, the more it started to feel like something we could go up against. If people knew about our struggles then we would have that much more love and support behind as we travel down this path.

On my birthday last year I spent a lot of time thinking about how turning thirty-two really did not seem like anything special. Just another thirty-something year. Until one night when I sat back and realized what I survived in the year leading up to my birthday. When I started recalling my journey; leaving the year behind and welcoming thirty-two seemed like a significant reason to celebrate.

That year I learned a lot about myself. I learned that my ability to remain strong and focused was substantially greater than I previously imagined. I learned that my role as mom was the reason I was put on this earth. I was chosen to be Grayson’s mom, and Rowan’s mom. Motherhood always felt like a choice I had made. That year I learned that motherhood chose me. Being the mother to a child with autism chose me. And whoever chose me knew what I am now learning; I have the strength, persistence and tenacity to rise above any challenge laid at my feet.

I consulted my husband and told him that I thought it was time to make Grayson’s autism more widely known. Together we decided that I would make a Facebook post about Grayson’s diagnosis. The moment I hit “post” I felt the most tremendous weight lifted off of my shoulders. We were out. We were no longer embarrassed. No longer ashamed. We were going to start living our life out loud.

The reception to the news on Facebook was truly remarkable. I received words of love and encouragement from people from all different phases of my life. I reconnected with friends that I had not communicated with in over a decade. I found common ground and similarities with people sprinkled all throughout our lives.

The decision to come out tipped the power struggle between ourselves and autism in our favor. For the first time since we heard those fateful words; we were in control. It was unbelievably healing. I remember feeling lighter. Set free. I took the power into my own hands and I had no intentions of giving it back.

We went on like that for a while. I started to feel comfortable sharing things that showed up in my feed with reference to autism. Each time I shared something I felt a sense of pride and relief. And as we moved forward I knew that I had so much more to say. So much more to share.

Six months later I made the decision to start writing a blog about our journey along the autism spectrum. It happened almost accidentally. We were having a particularly challenging few weeks and I sat down to catch my breath and decided that day was the day I would start sharing our story. And, so I did. And, so I do.

People ask me all of the time about our decision to share our experiences in such a public way. I understand what they are saying. I am putting it out there in the only way that I know how; real and unapologetically authentic. I talk about things that are informative, things that are wonderful, and things that are really difficult to say. I share all of these things because they are all a part of the journey. Our journey.

I know that one day I will have to sit down in front of my son and find the words to explain to him that he has ASD. I know I will need to talk to him about my decision to share our story, his story, in such a public way. I know that those conversations will be difficult. But I also know that the child I raise will understand the importance of raising awareness through our experiences. He will understand that we are helping people. And, that we are helping ourselves. I will look into his beautiful brown eyes and I will make sure he knows how lucky I am to be his mom. I will tell him all of the amazing lessons he has taught me. And I will help him to understand how sharing those lessons is helping other people.

Autism is not a choice. The real choice is whether to embrace it or hide from it. I have done both. And, I can tell you with complete certainty that the choice to embrace the presence of autism in our life has changed us in so many wonderful ways. And I hope, even in some small way, that it is helping to change other people too.



How to be an autism mom.

There is no manual given to parents after their child receives an autism diagnosis. There should be. There should be something printed in black in white that tells you how to breathe again. Something that gives you step by step instructions to survive. To be what you need to be. To be what your child needs you to be.

When we walked out of the hospital with an autism diagnosis, it was as is everything and nothing all changed at the same time. Grayson was still Grayson. I was still Grayson’s mom. And at the same time everything felt different. New. Changed. Unknown. I felt like a stranger in my own life. Words that I had only read in textbooks were now in my life in a way that I was not prepared for. But, how do you prepare for that?

And so I did the only thing that I could do, I put one foot in front of the other. I took deep breaths, in and out. I started my way along this journey. And slowly day by day, I became something so much more than I was before. I was still Grayson’s mom. I was still fighting like hell for him every single day. But I was different. Different in a really important way. I saw all of the ways, big and small, that autism began to infiltrate our lives. I saw it changing us. Our schedules, our plans, our family dynamics. I felt powerless against it.

I know that there are people out there who feel as if they do not have the strength to push forward. People who feel weak and defeated. People who feel beaten down. People questioning everything. People hoping to pinch themselves and wake up from a bad dream. I know this because I was that person. I was that person for a long time. Frozen in something unknown. Running from something that I could not outrun. And after a while I could not run anymore. So I had to actively learn to be someone different.  I had to teach myself to be an autism mom.

I did not figure it all out a one time. It came slowly. Naturally. Each time I went up against something bigger than me, it forced me to become more and more of who I am today. This is how I became an autism mom.

    1. I stopped living in fear of autism. I needed to feel as if I had even the tiniest bit of control over the autism. And I found that control by relinquishing fear. I made certain that I was informed. I read books, I googled, I listened to the members of our team and I asked a lot of questions. I became the “Autism Manager” in our life. Certainly not a title that I ever imagined I would hold. I decided that there was no such thing as a stupid question. So I asked questions until I felt satisfied with the answers. I asked questions until I felt less fearful. And as I became more informed and more engaged, autism became less scary. Do not get me wrong, there are still things that scare the crap out of me! When I see a new symptom developing or when I talk to another parent dealing with a difficult challenge; I am fearful. And, I have to imagine I am not alone in that feeling. But the fear is different. It is a fear that I know I can harness. Control. Overcome.
    2. I got it wrong, learned from it and then kept going. For every strategy that works there are several that fail. This is just a part of the diagnosis that you have to come to terms with. You will not always get it right. In fact, most of the time you will get it wrong. But give yourself time to stop and take a deep breath. Then learn from the experience and move forward until you get it right.
    3. I came out. I stopped seeing autism as something to be embarrassed of. Something to cover up. I learned to see the wonderful gift that Grayson’s autism was to the people in our life. To me. I saw it as something that could teach all of us to be more resilient. I saw the ways he helped myself and others to be patient and kind. I found a voice for our struggles. I shared my voice and our experiences. I freed myself from the loneliness that came with hiding the autism away.
    4. I surrounded myself with a network that “got it”. I was selective about the people we brought into the inner circle. I gave people in my life permission to talk to me in a real way about our real struggles. I forgave them for saying the wrong thing. And I forgave them for not knowing what to say. And they forgave me for stumbling through the diagnosis. They still forgive me today when I stumble. Stumbling is just part of the diagnosis. So I surrounded myself with people who could pick me up.
    5. I give myself permission to be imperfect. This is the key to survival. Accept less than perfect! Forgive yourself. Tell yourself that you are doing the best you can. Know that you will always be enough for yourself and for your family.
    6. I remember what I am fighting for.Look, the stakes are high. After all, we are talking about our kids. And whenever we talk about our kids we are filled with a crazy passion. My first thought after Grayson’s diagnosis was “How in the hell are we going to do this?” And sometimes today that thought still creeps into my head. And I have come to learn that the answer is quite simple; we just do it. Every single day. We find the strength to be what we need to be. Because we feel crazy love for our children. A love that is more powerful than anything that tries to stand in our way. And because we love them, and because they are the best part of us; we fight for them.



The truth is that if I was given the choice, I would certainly choose an easier path for my child and for myself. I have learned to embrace this journey, but that never fully replaces the feeling of longing for a life free of autism.

I am an autism mom. I am strong and brave. I am also weak. I am filled with fight. And I am filled with questions. I am confident in my mission, but tentative in my journey. I have moments when I get it right. And I have moments when it all seems wrong. At times I feel like a warrior forging ahead with strength and conviction. And other times I feel lost, retreating from the frontline. I am here. I am doing my best. I am perfectly imperfect. I am bruised but not broken. I am more than I thought I would be. And, often less than I need to be. I am fighting. I will fight. I am surviving. I will survive. I am fueled by an enormous amount of love for my children. I am a mom. And, I am an autism mom.


Sensory Overload in a Sensory World

IMG_8041As a parent to a child with a sensory processing disorder, I spend a lot of time trying to understand the way my son experiences the world. One of the most challenging aspects of his diagnosis is my inability to understand the things that he sees and feels. Ask any parent and they will tell you that there is nothing more difficult than to feel helpless for their children. Helpless to really know what their children need and want and feel. Helpless to comfort them. Helpless to make it all better.

We live in a world that is so full of sensory stimulation. Everywhere we go we are surrounded by lights and sounds and sensations. And this sensory world is becoming more and more automated every day. There is no way to escape the sensory encounters that are all around us. And, for the average person this may be annoying or irritating. “Thank you very much automatic flush, but I would like to finish going to the bathroom before you splash cold water on my behind.” But to kids like my son, these sensory things are so much more than annoying. They are debilitating.

My son is always tentative to use the restroom when we are away from home. Away from his comfort zone. As a 4 year old on the spectrum, we consider ourselves incredibly lucky that he is already potty trained. Some kids on the spectrum do not potty train until they are much older. And, some children on the spectrum never fully potty train.

Imagine walking into a public restroom as a four year old. To a four year old a public restroom must look very different than it looks to an adult. The restroom is big. It is cold. There are people moving about in every direction. There is a line. There are people washing hands. People opening and closing doors. Toilets flushing. Hand dryers sounding. To any four year old this would be overwhelming.

My four year old walks into the public restroom and immediately uses his hands to cover his ears. He cannot handle the variety and intensity of all of the sounds happening around him. He cannot process this myriad of senses firing at one time. So he retreats in the way he has learned to retreat. He covers his ears. He removes the sense. He hears less. He feels less. He comforts himself. Except even in this comfort there is an un-easiness about him.

Then he walks into the bathroom stall and he is met with a dilemma. How can he cover his ears and go to the bathroom at the same time? The answer is simple, he cannot. And because it breaks my heart, and because I cannot handle the look of fear and helplessness on his face, and because I would walk through fire for my son; I gently place my hands over his ears so that he can free his hands to go to the bathroom.

He finishes going to the bathroom. I remove my hands. He is proud of himself and excited to return from the bathroom and announce that “he did it”! And in that moment another toilet flushes. And, an automatic hand drier sounds. And then all over again his face is overcome with distress from all of these senses. And so we quickly leave the bathroom. Quickly escapes this overwhelming room of senses.

This is just one of the many reasons why it is so much easier to stay at home. In our very own comfort zone. Where sounds are controlled and regulated. Where senses are not overwhelmed. Where we all feel comfortable in our own bodies.

After the diagnosis I would have lived forever in the safety and comfort provided by the walls of our home. I found reasons every single day to cancel plans and continue the hibernation at home. We lived in fear for a really long time. And then one day we slowly started to test the waters. We learned that with the right preparation and the right tools we could venture out. Day by day we became more comfortable with the things that we could and could not control. And so we went out into the world.

But, the truth is that the world is not sensory-friendly. And, as I think about my son growing older I know that he will no longer want his mom in the bathroom covering his ears. But, as he gets older his aversion to the sensory overload in the public restrooms may not change. So he will find new ways to cope. Maybe he will wear noise cancelling headphones. Maybe he will wear elastic waist pants so he can easily shimmy them down. Or maybe, just maybe, the public restrooms will evolve.

Maybe public restrooms will become more sensory friendly. Maybe we will learn to give meaningful consideration to those living in this world with sensory processing disorders. Not because it is the easy thing to do. Or the cheapest thing to do. But, because it is the right thing to do.

I cannot imagine what living in this world feels like for my son. It is a thought that is always in my head. I wonder and worry about all of the obstacles that he will face. I go into so many situations armed with an evacuation strategy. I do that because I have to. And there will always be situations we cannot avoid. Triggers that set him off. Places we have to avoid. But there are a lot of situations we cannot avoid. When nature calls; she calls.

The next time you venture out of your house, think of all of the sounds and sights and sensations and scents that you encounter. Register all of them at the same time. And then imagine, just for a moment, that processing senses is difficult for you. Maybe it makes your skin crawl. Maybe it scares you.  So to cope, take one of those senses away. Close your eyes. Cover your ears. Plug your nose. That feels strange right? Like, you have lost something. Maybe you feel antsy. Unsteady. Because it is unnatural to take away your senses. To take away the way you process the world. But, what if you had to? What if that was your coping mechanism? What If you had to lose a sense just to go to the bathroom?

No, I do not know what if feels like for my son to go into a public restroom. But when I stop and try to imagine it; I just know that it needs to be better.


For Grayson…a message to my son with autism before his first day of school.

For GraysonTomorrow you start 4K. This day is a day your dad and I have thought about a lot since your diagnosis. Over the past 15 months we have spend many days talking about this day. Planning for this day. Worrying about this day. Where would you go? How would you do? Would we make the “right” choice? Would you be ready? Would we be ready?
Today your high school graduation feels like a millions miles away. Although, I know that one day, not too long from now, I will look back on this moment and think that it all passed by too quickly. So, before you grow another day older, before you head off to school, before it all passes by in the blink of an eye; I need you to know something. You are amazing and strong and wonderfully unique and I am so incredibly proud of you each and every day. 
I want you to promise me that you will hold tight to my words. Hear them. Remember them. Let them wrap around you when you feel down. Let them play over in your head when you need the strength to rise above. Remember you, the way I see you. Amazing. Strong. Wonderfully unique. Perfectly imperfect in all of the best ways.
You have a way of looking at the world that is full of magic. Seeing something through your eyes, for the first time or the hundredth time, is such a joyful experience. You see things. Not just with your eyes. You really see things. You look at a person or an object with so much intention. And, as you see something the wheels in your brain turn as you figure it all out. You study it, you take it in, you transform it from something unknown to something you know so deeply. I see you do this, and I watch in awe.
Your ability to really see things also helps you to remember things. Everything. Every single thing. You remember things that I completely forget. You remind me when you share a memory as we arrive to a place we have not been in years. Or when you tell me a specific detail about someone you only met one time.  Your memory is an amazing gift. But, it also causes a fair share of challenges. It makes redirecting you much more difficult. It makes it difficult for you to be adaptable. You want to recreate the same experience over and over. We try hard to teach you the importance of experiencing things in new and different ways.  We understand that sometimes you “need” things to be the same. So, we do our fair share of picking our battles in this arena. I love that you like to keep things the same. You are sentimental. Attached. I like to believe that you get this trait from me.
You are so smart. Too smart. The kind of smart that makes us say “oh boy” every day. You know things. And you remember things. And all of these things are stored in your brain. Your beautiful, wonderful, magical brain.
You feel emotion so deeply. Your emotions are much closer to the surface than most people keep them. Your joy is bounding. You feel excitement and happiness just being in the presence of things you love. Water. Outside. Friends. School. The color green. You literally jump for joy. It is as if your body lets out a tiny buzzing sound as energy and elation pour out of you. Happiness overcomes you. You experience anger and sadness the same way. You do not have any little emotions. They are all big. Super big.   We watch sometimes as happiness drains from your body and anger or sadness settles in. We buckle down and brace for impact. We do what we can to help, but many times you just need to ride the wave. And then, as quickly as it came, it is gone. The joy rushes back into your body. You jump for joy. You buzz.
This particular trait is one I think about a lot as I prepare to send you off to school. No one knows your emotions like we have come to know them. They do not know the signs. Or the triggers. They do not know the strategies. They do not know your heart. That you love so deeply. That you feel true sadness and remorse. But even the deepest remorse will not stop you in 5 minutes if the same urge takes over your body. They will come to know this. They will learn the strategies. They will know your heart. I believe this. Because believing this is the only way I have come to grip with letting you walk out of our door and out into the world.
You see, my beautiful boy, until now I have been able to protect you from so much. From places. From triggers. From people. From yourself. From the world. And as we prepare to send you out into that world; I realize there will be so many moments I cannot protect you from. There will be places that make you scared. There will be triggers that set you off. There will be people who do not understand you. I have to know in my heart that the work we do at home will help you in the world. I have to believe that we have raised you, despite the obstacles in your way, to face the world head on. Sure of yourself. Sure of how perfectly perfect you are.
So before you head out the door, I need you to know that I believe in you. I am in awe of you. You are kind and wonderful and amazing. And, my little man, are going to take this world by storm.

The day I met DR. TEMPLE GRANDIN on an airplane…

Something completely out of the world insane happened today!!!

We flew to Colorado to visit my brother and my nephew. Just like many parents we always have anxiety about flying with the kiddos. I meticulously pack the carry-on bags to include a variety of kid friendly activities. Each kiddo gets there own bag of activities and snacks. And, just for safe measure we plopped an iPad into each bag.

We flew out of “the easy airport”. So we parked, checked bags, and made it through security in a matter of 20 minutes. And then we began the artful mastery that is killing time without killing each other. We played in the kiddo area. We watched the airplanes. We ran laps around each other. We went to the store. We went to the restaurant (mommy may have engaged in an alcoholic beverage). And then finally it was time to board the plan. We entered the boarding area the way we enter most places; like a bat out of hell. As we divided and conquered to follow children something caught my eye. Rather, someone caught my eye. I saw a woman in a western shirt with short curly hair. She was familiar to me almost immediately. And then I heard her provide behavioral therapy guidance to someone over the phone and I thought to myself “OH, MY GOD! This is Dr. Temple Grandin.”

I quickly grabbed my phone to Google search. In my excitement I accidentally initiated the software update on my phone. Shoot. But also kind of typical. I asked my mom for her phone. A quick Google search confirmed that it was in fact Dr. Temple Grandin!! I called my mom over, I knew as a psychotherapist she would understand. We looked at each other in disbelief. How surreal?!?!

We boarded the plane. As luck would have it I was seated an aisle behind Dr. Grandin. She was 2 feet away from me. I prepared to approach. And then, as often is the case, the kiddos stirred. Gray announced to the plan that he was in the “red zone”. I quickly turned to look at Dr. Grandin and she smirked. Ahhhh!!! She heard my kiddo taking about the zones!!! Did she know? Did she wonder? Were we about to spend hours talking about our autism connection?

Just as I prepared to approach for the second time the pilot announced that our cargo load was light and that someone would need to move to the back. Dr. Grandin looked right at me. She saw the 6 of us all together with our kids and she selflessly said “I’ll head in back there.” My face smiled but my brain screamed NOOOOOO!

“That’s ok”, I thought. She’s behind me in the plane. One way or another I will introduce myself, and my amazing son, to this woman who has given her life to advancing the world’s understanding and acceptance of autism.

At the end of the flight we de-boarded the plane outside. We had to wait for the green tagged stroller that went under the plane. And I knew, this was our opportunity. She was the last person off the plane. She had her bags carried on with her and she looked ready to go. I quickly walked over to her. It was very loud on the tarmac, so I gently touched her arm and said “excuse me, Dr. Grandin. My son has ASD and it would mean the world to me if you would take a picture with my son and I.” She seemed hesitant but responsed “sure, ok”.

Gray was so obsessed with the airplanes that he could not focus on the amazing photo op. We quickly snapped a few photos. I told her “from the bottom of my heart I thank you for all you have done to pave the way for my son.” She looked at Gray and told him to “behave.” Then she looked at my mom, fancy and fabulous as always, and asked if we were in town for the livestock conference.” Nope. Not even a little. Lol.

Oh, what a wonderful experience. I think about having those pictures and what that will mean for us as we continue down this journey.  I do not know where my autism advocacy path with lead. I do not know all of the ways Grayson’s Autism spectrum diagnosis will change and impact the course of our life. But, I do know that wherever we go we will carry this memory with us forever. I feel blessed. I feel empowered. I feel ready to take on whatever comes next.

Thank you Dr. Temple Grandin. Thank you!