Everything we know about autism we have learned by watching our son over the last twenty-three months.

Sure, I have read my fair share of online articles and books. I have watched countless documentaries. I have connected with other professionals and parents exploring the ins and outs of this advanced sensory processing disorder.

But my son’s autism is like an a la carte version of everything that I have ever read. It is little pieces of this, and little smatterings of that. There is no recipe. No directions.

Take little pieces of all of things you think autism might be, put them together in a bowl. Then mix them around and around again. Mix them up just a little extra for good measure. The result is what our son’s autism looks like. A mix of little and big pieces of everything that autism can be.

Some of the pieces we expected. Other pieces we never saw coming.

Autism is so much wigglier than I ever could have imagined. If you have every spent any time around my son you will know exactly what I mean. There is just a certain electricity that comes from him. I often tell people that if you keep your voice very quiet and get up close enough to him, it is almost as if you can hear him buzzing.

The wiggles are both an emotional and a physical reaction. Sometimes we know the wiggles are coming and other times they catch us by surprise.

I have learned a lot of big words since our son’s diagnosis. In autism treatment we talk a lot about the antecedent. Or, the thing that occurs right before a specific behavior. When it comes to Grayson’s wiggles we are trying to observe the things that are happening right before he becomes wiggly. In theory, if we can identify the antecedent we may be able to identify the root or primary need the behavior is fulfilling. And, once we understand the need, we can help him to adapt his wiggles to more socially appropriate behaviors.

Sometimes his wiggles are small. It can be something as simple as a toe tap. Sometimes his wiggles are really big. He will stand up suddenly from the couch and begin to run in laps around our house. At times the wiggles are just physical movements and other times they are both sounds and movements. His wiggles can be over in an instant or last an entire day.

There is still so much about his wiggles that we do not understand.

We know that Grayson gets wiggly during extreme emotions; when he is really happy or excited or angry. Almost as if sometimes his emotions just get too big for his body. In those moments we can usually see the emotion building and we know that he is getting close to a wiggle burst. When we can see it coming we try to talk calmly to him. But, once Grayson is in a wiggle, there is very little we can say or do to help him snap out of it.

In that moment, for whatever reason, he needs to get that wiggle out. So he wiggles until he does not have any more wiggles to wiggle out.

Sometimes the people around us have a tough time understanding Grayson’s wiggles. After all, for the most part people are pretty good about controlling their bodies and keeping their wiggles in check. So, watching my son lose control of his wiggles is confusing for people. Believe me, it is confusing for me too.

I always tell people not to be afraid of Grayson’s wiggles! His wiggles are just something he needs to do, like going on a break or taking deep breaths. I understand that it may look scary, but his wiggles are all about helping himself, not about hurting anyone else.

Recognizing my son’s wiggles and his need to release them helps me to recognize that I myself have lots of wiggles just waiting to get out! I get my wiggles out by working out or having dinner with my friends. I get my wiggles out during an adult’s only conversation with my husband. Sometimes I get my wiggles out when my sassy two year old leaves the room and I shake my fists behind his back. (Come on, you know you do it too.) I get my wiggles out in lots of ways. Because getting our wiggles out is a good thing.

I learn so many things from my son’s autism. I have learned that being wiggly is just a part of life. And, whether our wiggles last a brief moment or all day, learning ways to self-regulate and keep moving through life is such a valuable skill.

Be unapologetic in your wiggles. It is ok to do things that make you better, especially when they do not hurt anyone else.

JS

I know that I expect too much from my typical son. I know it and see it and feel it in big and small ways every single day.

In the way he rises to the occasion time and time again to be what we need him to be. In the instances he accepts less than he deserves to help us move forward from a difficult moment. In the gentle sadness in his big blue eyes that see things I cannot protect him from. I expect too much of my typical son. And every single day he rises to the occasion to be the little man that I need him to be.

We received my oldest son’s autism spectrum disorder diagnosis when my youngest son was only 11 months old. But out great expectations of him started long before his brother’s diagnosis.

Our oldest son has always needed a lot from us. He needs time and energy. He needs our focus. He needs constant direction. And redirection. And then more direction again and again. He needs patience. He needs so much patience that we spend time each day taking deep breaths and digging deeper for more patience. Trying to be everything we can be to get through that moment.

He needs our love. Unconditional love. He needs to feel safety and comfort when he is near us. It takes time to make him feel safe. And, it takes time to make him comfortable. He needs everything to be just so. And, each day we arrange all of the pieces of our life to be just so. We arrange, and rearrange, and sometimes we wipe it all clean and start from the beginning.

He needs these things from us. And because he is our son, and because we love him with the deepest kind of love, we give him what he needs.

In too many moments we turn our attention from our typical son to address the needs of our son with autism. But our typical son has needs too. He needs love and support. He needs guidance. He needs moments of joy and silliness. He needs to feel safety and comfort. He needs from us. And we need from him.

He is growing up in a house that is not always peaceful. Many days he watches as his older brother throws things and slams doors. He sees us sweep up the shattered pieces of the broken things. He looks on with wide eyes as his brother pummels us in the head. Despite our best efforts, he see our tears. He watches his mommy and daddy fight to be stronger.  He cries and covers his ears as he hears the screams coming from his brother. Screams of sadness, screams of anger, and often screams for no reason at all.

In all of these moments I go to my youngest son. I hold him close to me and I try to explain things that I myself cannot understand. I tell him about his special big brother. I help him to understand how every person is different. How every person needs different things.

I tell him every single day how much his big brother loves him. I tell him to never forget that. To always remember the love. And, as I say these words to my two-year-old son, I take the opportunity to remind my heart of these words as well. It is all too easy in the chaos of the moment to forget that the anger and fear and sadness are the autism and not our beautiful boy. Love it the center of it all. We have to remember the love.

So I tell my youngest son that everything is going to be ok. And, I tell myself too.

I know that one day, not too far from now, I will sit down with my youngest son to explain just how special and different his big brother is. I will help him understand. We will talk about autism in a real way. We will use real words and real feelings to describe the presence of autism in our life. We will create a dialogue that is open and on-going.

My youngest son will have questions. He will want to know why his brother always gets the green plate. Or why he has to take the donut that is missing sprinkles on one side. He will question why he is asked to “trade” items that he is happily playing with when his brother changes his mind. He will ask why time and time again we leave an activity that he is enjoying because his brother needs to leave.

He will ask me these questions, and so many more. And, I will give him the answers that he deserves.

The truth is that I know I expect too much out of my typical son. I ask him to be patient and brave and kind. Strong. Stronger than any two should need to be.

He amazes me every single day with the power of his heart. I see the way that he loves his brother unconditionally. I see the way he rebounds from being pushed or hit. And, within moments he is resting his head on his brother’s shoulder.

Yes, I ask too much of my youngest son. But, he chooses to give it. To me, to his brother, to our family. Because his love is the purest form of love. Just a typical two year old boy who fiercely loves his brother. Autism and all.

An autism diagnosis is not an easy thing to process. When my two-year-old son was diagnosed with autism spectrum disorder I had no idea how to keep moving forward. I had no idea how to be the mom that he needed me to be. I had no idea what to think and feel. And, I had absolutely no idea what to do next.

In many ways I am still going through the motions and the emotions of the diagnosis.My son’s autism does not exist in a bubble. It is exists in our life. Our crazy, amazing, chaotic, sometimes-messy life.

And, there are times when it feels like the biggest part of our life. It is around us everywhere we go. We cannot out run it. We cannot outsmart it. All we can do is work  each and every day to be strong enough to survive it.

Believe me, I do not use those words lightly. I get that you may not understand why I would talk about my life in terms of survival. I get it, because I did not understand it at the beginning either.

At the start of this journey I did not understand the depth of pain. The emotional pain of watching our son struggle. The physical pain we experience trying to keep him safe from himself. The financial pain. The growing pain.

Autism is big. It should come as no surprise  that the pain autism leaves in the wake is big too. So, we process our pain. We process our pain over and over again. Sometimes we get done processing our pain, and then we start all over again. And then again. We will do this until is stops hurting. Because in my heart I need to believe that it will stop hurting one day.

After diagnosis I was different. I felt everything differently. I started to feel myself change. I was a passenger on a journey that I was not prepared for. A guest as a party that I did not RSVP for. A parent chosen for a life that I was not certain I was capable of. And yet, there I was.

In order to move past the diagnosis, I gave into the emotions inside of me. I let myself feel what I needed to feel. I hoped that if I felt what I needed to feel, then one day I might be who I needed to be.

First I felt fear. I felt confused and bewildered by so many things that I did not know.  I devoured every piece of information. I think this phase of my journey is best labeled “the Google phase”. I went in search of answers to my questions and I returned with even more questions.

Armed with too little information and too many questions I began to feel defensive. I looked for ways to disprove the diagnosis. I tried to poke holes in something that I did not even understand. Not because I needed my son to be anything different then he was. That was not it. I needed to be the kind of mom who could fix things for my son. And this was the first time I could not do that. I could not fix the autism away.

As the defeat set in the defensiveness became anger. This specific kind of anger is hard to describe. It is the anger of a parent; helpless and powerless to protect their child from something that feels very big. Something very real. Something very permanent. It is a crazy kind of anger. It is an anger that makes you kick and scream and demand to know “why?” It is an anger that slowly creates emptiness.

And when the emptiness sets in, when there is no more anger inside of you, the sadness enters.  The feeling of loss. The mourning. And all at once the sadness washes over you in a way that is both a relief and a burden. Relieved to be free of the anger. Burdened by the magnitude of the sadness. And then time passes and the sadness starts to feel normal, comfortable even. After a while you begin to accept that the sadness may never end.

But it does.

I learned that I had to feel the fear and the defensiveness, and the anger, and the sadness, and the loss.  Each of those feelings is a part of a much longer journey. The inevitable journey towards acceptance.  So I felt the things I needed to feel in order to be who I need to be.

This process is not linear. In many ways, yes, it is a progression. But the movement is not always forward. Sometimes I go around and around in circles. I spend a lot of time in acceptance. But,  I am often drawn back to anger and sadness and fear. They are a part of this never-ending journey.

So I journey back to those darker places from time to time. I stay there as long as I need to. And when I am done feeling what I need to feel, I fight my way back to acceptance. So that I can be who I need to be.

Autism is big. The pain is big. The sacrifices are big.  But the love is big too. The pride of watching our son progress is big. The feeling of accomplishment is big. The commitment is big. The future is big.

Autism is big. But, I am bigger.

JS

It would be easy to look at my life and feel sorrow over the things that I have lost. My parenting journey has been filled with pain that I was not prepared for. Loss that I did not expect. Not the kind of loss that you can see or touch. Nobody took anything tangible away from me. I lost things that I could not wrap my hands around. Things inside of my head. And, things inside of my heart.

After my two year old was diagnosed with autism I mourned the loss of the life I thought I would live. The vision of a picture perfect family. A family that could venture out into public without social stories and fidgets and anxiety.  I lost the ability to believe that I could control everything in my life. I lost things. Things that mattered to me.

Loss catches you off-guard. It stops you in your tracks. For a while it consumed me. That is, for a while I let it consume me.

And then one day I took a look around me and realized that nothing from my life was missing. I still had all of the things that I had pre-diagnosis.

My husband, my children, the roof over our head. The love and support of our dear family and friends. My faith. My fire. My strength. I have everything I need to walk this journey. And sure, some of the days are hard. Some of the days are difficult and painful. Some of the days question my strength. But, every single day I am surrounded by the people and the things that I need.

Too many people are not as fortunate. People lose things that are very tangible. Things and people that they need and touch and feel. They lose things that I cannot imagine losing. And, that kind of lose helps me to put my own loss into perspective.

People very dear to us experienced an unimaginable loss over the holidays. A loss that cuts to the core of parent’s heart. A loss that is both real and tangible. A loss that reminded me of all of the ways that losing something can make you feel. Sad. Confused. Angry. Bitter.

I looked to my friends expecting to see these emotions, but what I saw was something quite different. I saw two people with strength beyond the bounds of strength. With love and faith and patience and hope swirling around them.

Loss presents each person with a choice: bitter or better. My friends made a choice, they choose better. Not bitter.

I continued watching them in utter awe of their strength and faith. I found myself drawn to their strength. In fact, I felt as though their strength was helping me to process my own grief. And, in that moment I realized that I had my own choice to make in my own life.

I was living in the middle of bitter and better. And, I think that I had been living there for a very long time.  Many days I felt strong enough to choose better, but in moments of weakness I felt myself drift towards bitterness. So I existed in the middle. Unsure if I could every fully choose. Unsure until I drew strength from my dear friends and their unbelievable faith.

Better moves us forward. Better gives us strength. Better gives us the things we need to move on. For ourselves. And, for our children. Better gives us hope. It opens our hearts to love, love from ourselves and love from others.

Bitter keeps us stuck in one place. Bitter is all-consuming. It sucks the life out of everything living around it. Bitter drains our energy and our hope. It closes our hearts to the love that is waiting for us. Bitterness wins. But, only if we let it.

I will not let bitterness win. There is too much good in this world. In my family. In me. I will wear my choice to be better like a warm blanket. I will let my choice comfort me. I will let it give me strength. I will hold my recent reminder about loss and strength near to my heart. I will let it guide me down this uncertain journey. I will do that because I choose better. Not bitter.

JS