When Impossible Things Become Possible…

Along the autism spectrum you learn to prepare yourself for disappointment. Not because you are a matter; because you are smart. Preparation lessens the impact of the disappointment once it hits.

But while preparing for disappointment you start to make lists. Lists of things you can’t do. Experiences you won’t have. A life you’ll only partially live.

And you live within the boundaries of those lists. You level set your expectations time and time again. You see the life you imagined slip away. You learn to make a home inside of a life that is defined by the your lists and disappointments.

But I am here to tell you that this life, an autism life, can be so much more than the tight corner boundaries and disappointment you box ourself into. Not always, and maybe not forever, but sometimes this life is every bit the life you imagined. No lists of things to avoid. No asterisk on your experiences. Sometimes the autism life does not feel like an autism life at all. Sometimes it is just a life.

Today my 6 year old son is at a water park. It is loud and chaotic and filled with unfamiliar people and sounds. We were here in this exact spot one year ago. A fact that is enhanced every time our son reminds us of the color of the slides and umbrellas around every turn. But this experience is completely different from last year.

Today he waits patiently in line; sometimes up to 30 minutes. Today he is joyful and excited, but also calm and collected. Today he is fearless. Today is running with the pack. Today he is tapping a child on the shoulder and saying “come slide with me.” Today he is living his best life. Today he looks no different than any other child at the water park.

That is a sentence I never thought I would say. And even now I say it tentatively. But I say it for the parents who are sitting in a much different place along his journey. To the who are hopeless and fearful. To those who are writing their “I’ll never be able to” lists. To the parents who feel very different from the other parents around them. For you, I say this…

It won’t always be perfect, but it won’t always be hard and painful either. There will be moments that carry you forward. Moments that give you hope. Moments that make you appreciate the hard work and tenacity it took to push forward. Remember the good moments. Revel in the fact that you are living a moment you never thought you would. A moment you proclaimed as “impossible.” Give thanks for this moment. Linger In the magic of it. Allow yourself to feel even just a little bit of hope.

And then get inside of that moment with your child. Experience all of the joy he feels. Exhale. Life your best life right beside your child. You both earned it.

JS

Why I Put Autism in the Middle of our Lives

Autism is a part of our life every single day. So many of the ways we recognize and adapt to autism have become second nature for us. But, as natural as our life with autism feels to us today, I would not say that we “forget” about the autism. It is actually kind of the opposite of that.

This may not make sense to you. Most days it still does not make sense to me. I cannot forget about autism. I will never forget about autism. It is impossible. Why you ask? The answer is simple, although also painstakingly complex. I will not forget about autism, because I put autism in the middle of our lives.

That might shock you. The idea that I would knowingly decide to put autism in the center of our lives. But, I did.

Autism came into our lives without warning. We were not prepared to be the parents of a child on the spectrum. Like most first time parents, we were not even fully convinced that we were prepared to be parents to a typical child.

Autism was not in our lives until it was. And then in an instant it was everywhere.  It touched every single piece of our life. Our family, our friendships, our home, our finances, our possessions. Nothing was off limits.

Autism took things. Big things. And even though now we can recognize that it gave us other things in return; there is no way to find comfort in that at the beginning of diagnosis.

One day at a time we learned to live with the autism in our lives. We stumbled around a bit to find our footing. We approached some days feeling tentative and unsure. On those days we were careful to sidestep through life; strategically avoiding well disguised autism landmines. Other days we charged through life feeling bold and brave; sure that we could outrun autism.

But neither of those angles worked for us. We could not side step through our life. And we could not outrun autism. Both efforts left us feeling exhausted. Defeated. We were empty and depleted and in no shape to face the next day. Autism was winning in a big way.

So we changed up our strategy a bit. We put autism in the middle of our life. Why? Because now we know exactly where it is. We put it where we could see it. Where we could learn from it. Where we could always have an eye on it.

I know that autism impacts everything that we do. Some days there are small impacts; things that you may not see or recognize unless you know where to look. Other days the impact is large; you might as well put a flashing light and divert traffic. Uncertain of what each day will bring; we plan for anything.

We understand that autism is a lifetime diagnosis. So we choose to spend our lifetime learning how to make the intersection of “autism” and “life” as smooth as possible. For us that means acknowledging autism. Planning for autism.  For us that means not being afraid to say “our son has autism.” It is not an excuse. You will never hear me use my son’s diagnosis as an excuse.

Autism is an explanation. It is verbal confirmation that there is something real in our lives. Something that we are working through. Something that we struggle with from time to time. Something that makes us different from other families. A constant balance in a million different directions. A journey that has no end.

At first I put autism in the middle of our lives because I could not find a box large enough. I wanted to tuck it away and put it on a shelf. I wanted to give it an on and off switch. I wanted to be in control of the autism in our lives. But I quickly learned that there is no box large enough. There is no switch. And there is no controlling autism.

Today I put autism in the middle of our lives because I am not ashamed of my son’s diagnosis. I am thankful that his diagnosis provided a map for our journey. I am thankful that with each passing day we learn a little more. Each day we feel a little more comfortable along this uncertain path.  I am thankful that we, autism and our family, have learned to live in almost-harmony.

It is not perfect, but is is so good!

JS

Hard Work, Hope, and a lot of Love

One of the most amazing gifts of parenthood is the hope we feel when we look at our children. We hope that they will be kind. That they will reach all of the potential that we see inside of them. We hope that they will learn from their mistakes. We hope that they will blaze their own trails. March to their own drums. Dance when no one is watching. We hope that their journey through life will be free of pain and hardship. And we hope that we have given them the tools they will need to survive whatever comes their way.  We hope beyond hope that our children will be happy. That our children will be loved. That our children will have as much hope in themselves as we have in them.

Our hope for them becomes a part of us. And one day at a time the hope we feel for our children entwines with the hope we feel for our own lives. The hope we have for our children grows as they grow. And, while parenting is an uncertain journey, there is always certainty in the hope.

One year ago in April I sat in front of our IEP team. Over the course of my son’s 4K year this became a very familiar scene. It had been a tough year. The end of the year lingered in the not-so-distant future. Frustrations were high. Patience was dwindling. Fresh ideas were running dry.  And there at that table surrounded by familiar strangers something significant happened to my hope.

“We do not believe that your son can be successful in a traditional Kindergarten classroom.”

Those words cut like a thousand stabbing knives. They cut deep inside of my heart. Of my hope. And as the words cut through me I tried to understand the profoundness of their meaning. For my son. For me. For my family. For my hope.

I love my son. I love him through every single bump of our journey. I loved him from the second I first heard his heart beat; long before I ever held him in my arms. I loved him through every milestone; even the ones he passed much later than expected. I loved him through the scary unknown months. I loved him through diagnosis and every day since. Because the love I feel for my son is never-ending. Unconditional. Loving my son is the only thing that I am truly certain of.

And my hope for him should be no different. But there on that day someone else tried to take control of the hope I have for my son.

I left that IEP meeting feeling sadness and disappointment and frustration. I left that meeting feeling angry. And as I sat in my anger I realized something important. I was not angry because of what they said; I was angry because they were wrong. And just like that my hope for son multiplied. It filled up every available space inside of me.

We worked harder last summer than we have ever worked. While other children were at the beach; he was in speech therapy. While other children were on camping trips; he was in outpatient occupational therapy. While other children were playing with friends; he was playing with behavioral therapy technicians. For thirty hours a week all summer long he showed up and worked hard. And it was not always easy. It was rarely without a fight. But we knew that had to forge ahead. We let our hope for our son guide us through it.

Today was his last day of Kindergarten. He completed a full year of traditional kindergarten. And do you want to know something else? HE KILLED IT!

In April he was released from his Speech IEP. Due to his tremendous progress he no longer qualifies for speech services. My son. The same boy who communicated through grunts, gestures, and 20 words until he turned 3. That boy no longer qualifies for speech services.

In 4K he had one-on-one aid coverage for 90% of his day. In Kindergarten he had one-on-one aide coverage for less than 40% of his day. This year he was making choices about sensory breaks. He learned to ask for breaks when he needed them. But more importantly he learned how to communicate when he did not want a break. When he wanted to stay in the class with his peers.

This year around the IEP table there were a lot of smiles. We have always written IEP goals around duration of tasks and behaviors. “Participate in an activity for 2 minutes.” or “Participate at the table for 3 minutes.” This year his IEP says that he will complete tasks “to the extent and duration of his typical peers.”

“TO THE EXTENT AND DURATION OF HIS TYPICAL PEERS.” I still cannot say that out loud without tears welling up in my eyes. Because we did that. All of us. We all made sacrifices. We said “no” to things that sounded fun because of our commitment to our son and his treatment. And don’t get me wrong, there is a lot of fun in our life! But there is a lot of hard work too.

Today I am beyond proud of my son. I am filled with so much pride for him and his tremendous accomplishments. I am so thankful for the incredible team of teachers and technicians and family and friends that surround us every day; good, bad, and just plain awful.

I have never been more certain that his life is going to amazing. I have never had so much hope for him and his life. And no one will ever take that away from me. No one will ever take that away from him!

JS

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Awareness and Kindness Go Hand in Hand

When we travel my son wears a t-shirt that says “Autism is my Super Power.” He has no clue what it says or what it means. To him it is just a blue T-shirt with cool lightening bolts on it.

He has no idea that it is so much more than a T-shirt. It is a plea. It is a public service reminder for patience and kindness and grace. It is a gentle nudge in the direction of considering the people you encounter in the course of a day. Remembering that a single glimpse of a person is only a single glimpse.

The t-shirt is a plea. It is my plea. My plea to show us kindness. To be patient with us when it takes us an few extra minutes to get through security because our son does not understand why he cannot carry his beloved ducky through. To send compassion rather than judgment our way when my son makes loud noises or wiggles in his seat. To remember as we walk past you to board in the pre-board line for travelers with disabilities that not all disabilities are on the surface. My son is not in a wheelchair. If you glance quickly you may not see a disability at all. But the extra time ahead of other passengers helps my son to work through some of his airplane wiggles. It satisfies his rigidity and underlying need to be “first”. It gives my husband and I time to get our bearings. Do not judge us for going ahead of you. Instead, spend your energy being thankful that you are not the family boarding in the disability pre-board.

I put my son in his autism t-shirt because it helps to make our travel day easier. It helps me to feel as though we are creating awareness. Awareness to my son’s autism. But mostly awareness to the fact that every single person is walking a journey that we may not see. That we may not understand. And there may not always be a t-shirt or a neon flashing sign to call out the need for extra kindness and compassion.

Lead with kindness. I say this all of the time. Give kindness first. Before judgements or second guessing. Before speculation or assumptions. Before first impressions or opinions. Not because it is the easiest thing to do, but because it is always the right thing to do.

I can only imagine what we must look like out in public sometimes. We follow very rigid patterns. We speak in simple directives. We are kind of like passengers on a plane; acutely aware of the restrooms and the exits and prepared for an emergency landing if needed.

We are usually looking in twenty directions at one time. Especially if there is a body of water or bouncy house anywhere in our vicinity. Two things we know for certain: water is his jam, and waiting in a bouncy house line is not.

We usually leave places quickly and without notice. Sometimes we are exercising our ability to sense a meltdown coming and leaving before it fully erupts. Other times we ignored the signals and are paying for it as we hurriedly pack and bolt.

I guess the point I am trying to make is that we choose to live our life out in the world. And sometimes it is not super graceful. And sometimes people look at us. Sometimes they roll their eyes. Sometimes they pre-judge. And sometimes putting my son in his autism t-shirt helps to minimize all of that.

This journey is full of a million choices. And a million things that we have no choice in at all. I am certain that there is no perfect way to “do autism.” There is no “nailing it.” There is just walking this journey one day at a time. Accepting the non-choices and responding with the best choices at your disposal in any given moment.

Some days I actively choose not to put him in the T-shirt. Maybe it is my way to take the temperature of the world. Is the world any kinder or more accepting than the last time we ventured out? Maybe it is the need deep inside of me to appear like any other family. Or the most likely option, maybe it has been a busy week and the t-shirt is still in the dirty clothes hamper.

This is my long winded way of reminding you to be kind. To lead with kindness. To teach the little people in your life to lead with kindness too.

Kindness starts with awareness. Pay attention to the people you encounter. Look for opportunities to show compassion. To reserve judgment. Maybe even to offer a helpful hand.

JS

A Little Perspective with a Big Impact.

I will be the first to admit that there are a lot of days when this journey feels like too much. Days when autism seems too big and too scary. Days when I am weak and not enough.

In order to fight against those feelings I do important things to take care of myself. About a year ago I started talking with a therapist who specializes in families with an autism diagnosis. I cannot tell you how much this has helped me and my family. In our world so many things are about our son and his autism. It can get really easy from day to day to forget to focus on the three other people who live in this house. Taking to the therapist helps me to refocus. Helps me shift my perspective when shifting is needed.

Last summer my therapist said something to me that has completely changed my outlook on autism. And I guess my outlook on every day of our life. This journey. My Marriage. My family and friends. Me.

I was telling him a story about a trip to the zoo the week before. I explained to him the pain I felt when we could not experience life the way I saw other families experiencing life. How often even the simplest of outings or occasions were just too hard for us. I told him I watched my friend’s Facebook newfeeds and filled with envy and sadness.

I told him that all I wanted was a normal summer day as a normal family on a normal trip to the zoo. No meltdowns. No sideways glances. No wishing I put him in his “Autism is my Super Power” shirt just so that they would understand. So that they could look at him and know that they were seeing autism and not naughty.

I started to cry. It was June and we were only four weeks into the summer. I just was not sure how I could survive another summer feeling isolated at home behind the safety of our backyard fence.

I felt pain for myself and for my family. But mostly I felt pain for my son. Pain that his experiences were often colored by meltdowns and behaviors. Pain that he could not experience life differently.

My therapist looked at me sympathetically. He was quiet just long enough that I started to feel uncomfortable with my vulnerability and the way I had exposed so much of myself to him. And just when I opened my mouth to explain away my emotion, he started talking to me. And the words he spoke are words that I will never forget.

“Jessica, if I would ask him today if he enjoyed going to the zoo, what do you think he would say to me?” he asked.

I thought for a moment and then answered honestly, “I’m sure he would probably tell you that he loved the zoo. That the elephants and the lions are his favorite.”

“So, why do you think he is missing out on something?” he continued.

I grew a little defensive that the answer was not obvious, “Because there is another way to experience the zoo. People leave the zoo every day without kicking and screaming and hitting their parents across the face. Families drive home from the zoo every day without the autistic son screaming in the back and the mom silently sobbing behind sunglasses in the front seat.”

“You are right. There is absolutely a different way. You know it. Your husband knows it. But Jessica, he does not know that. He does not know that his experience is anything different than a normal day at the zoo. Because that is his normal. That is all he knows. Those feelings and behaviors and the way his brain works are all he will ever know. But Jessica, you do know that it can be different. You have experienced peaceful and tranquil family outings. You have had a lifetime filled with your normal experiences. You are right to feel pain. To feel a loss. But free yourself from the feeling that you are failing your son by not giving him a different experience. Free yourself from his pain, because he is not in pain.”

I sat there quiet for a long time, tears streaming down my face. Because, he was right. The pain I felt was my own pain. My own loss.

I lived inside of that conversation for a long time after that appointment. I reiterated his words to my husband and to my mom. I spent time processing the words and the way they made me feel. And I realized that the words made me feel free.

His words changed my perspective. You see the autism diagnosis goes to just one member of a family, but the impact extends to each of us. We all live inside of the autism bubble. We all live with the symptoms and the behaviors each day. Autism has taken things from all of us. But no matter how close the autism brings us; it is still the great divide inside of our house. My son is on the autism spectrum; and The rest of us are not. The way we experience the world is completely different. And he will never experience the world like we do. He will never know that he is missing out on a different kind of experience. He will only know life the way he knows it. He will only know life with autism.

There is peace in my new perspective. And more importantly, there is a lot less pain. When our experiences do not go exactly the way I hoped I remind myself to take a deep breath. To remember the fun. To look at my children and the smiles on their faces. To tell myself over and over again that life does not have to be perfect to be wonderful. And just like that, it is. Imperfect; but completely wonderful.

For the last several months our outings have been much better. We are out in the world living our truth and making memories. Maybe it was the perspective change, maybe it is growth, or maybe it is just dumb luck and a good couple of months. But either way, I’ll take it.

JS

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I see you

I want you to know that you do not need permission to be a mess. But I am going to give it to you. Be a mess. Fall apart. Let yourself feel vulnerable. It may be hard, but do it anyways.

I know it is hard to let go. To admit that you do not have it all together. To look your life head on and feel afraid and alone. I know that you question yourself. I know you question everything. I know that you are tired from trying to wrap yourself around everything. I know that you wonder if you are enough.

You are enough. And I know that because I am enough too.

I give you permission to let your emotions get the best of you from time to time. To fall apart when the lack of control makes you feel weak. To mess up. To say and do the wrong things sometimes. To stop being everything for everyone. To start being only what you need. Not all of the time, but enough of the time to help you heal the pieces inside of you that feel broken and lost.

I see you. I know your pain and your anger and your fear. I know you hate the journey, and not the life. I know you feel guilty sometimes. I know that you would choose differently if the choice was yours. I know how it makes you feel to think that. To feel that.

I know you feel like you need to suck it up. To be braver than you know how to be. To look forward with hope and wonder. To stand against the fear and the pain weighing you down.

Do not suck it up. Do not push your feelings aside. Do not try to outrun them. Because you cannot. And you never will.

Feel everything. Feel it in all of the places inside of you. Feel the joy and the wonder. But feel the pain and the fear too. Let yourself live inside of all of the emotions. They are an important part of this journey. And an important part of you.

Because you are brave. You are walking a journey that many could not walk. You are doing it every day. And you rarely complain. Not really. Not the way you want to. You are brave and strong and you are nailing it. Even when you do not know that you are.

You are enough. Today. Tomorrow. And in all the days are ahead.

Breath. Love yourself. And remember that you do not need permission to fall apart. Fall. Fall fast and often. If you do not fall, then you cannot rise. And I think we learn the most about ourselves from the way that we rise.

Sometimes I am sad. I feel anger and fear. Sometimes I am lonely. Numb and hopeless. Sometimes I fall.

And after the fall, when I am all done feeling the things I needed to feel, I rise. I look forward, but not too far. I breath. I love myself. And I go. Another day on this journey that has no end.

Autism and the Smiley Face

Three years ago my son received an autism spectrum disorder diagnosis. He was two years and ten months old at the time. I still remember every single detail of the day.

I remember lying restless in the guest room of our dear friends awake hours before the alarm. I remember that I lost my cell phone and we were nearly late for the appointment. I remember that my son thought we were embarking on a magical adventure. I remember the people we spoke to and the rooms we sat in. I remember the fear and worry and exhaustion. I remember a lot of things about that day. But there is always one detail that pops into my memory first. The memory of my beautiful boy with his big smile and a bright yellow balloon.

The journey to an autism diagnosis is not for the faint of heart. I am by no means faint of heart. I consider myself to be a pretty strong person. I have a good sense of who I am. I have known pain and loss in my life. But nothing could have prepared me for our journey. A journey filled with questions and waiting lists. More pre-screenings and evaluations than I can count. Hearing tests and speech assessments. Pediatricians, specialists, behavioralists, occupational therapists, speech pathologist, and psychologists. And this was all pre-diagnosis. For ten months our life was a journey to diagnosis. And endless quest for answers.

We were consumed with milestones and early indicators. The word “typical” quickly became a bad word in our house. Against my better instincts I googled everything that popped into my head. Once I even googled “does my son have autism?” As if google was a magic 8 ball able to answer the questions burning inside of me.

And as we walked into the testing facility three years ago my heart beat out of my chest. I lost myself in all of the possible outcomes. I looked at my two year old boy, still my baby really, and I saw the man he would become. I could not stop myself but wonder all that would stand between now and then.

It was a long day. There were moments of joy as we watched him run around the hospital as if it were an amusement park. There were moments of fear as we tried to see him through the eyes of the evaluation team. After all, how could they possibly capture all there is to know about him in a seven or eight hours? There were moments of sadness and exhaustion and anger too. We felt it all.

And before we went into the final meeting he pulled us into a gift shop and motioned towards the balloons. We let him choose a balloon as a reward to our big brave boy. As tired as I felt, I could not imagine how he must be feeling. He looked at the bunch of balloons and pointed towards a bright yellow balloon. A smiley face balloon.

And as we walked into that conference room he trailed behind us,that smiley face balloon flying high. And as they said the words no parent can ever be prepared to hear, that smiley face balloon zipped and bobbed around the room with my son. And as I fought back ten months of pain and tears, that smiley face balloon stared back at me.

And just 3 feet below that joyful balloon stood a joyful boy. No different in that moment than any moment before. Wiggly, smiley, and filled with joy.

The course of our lives veered that day; as it does many days as parents. I often refer to the autism diagnosis as the map to the journey we were already on. And if you ask my husband, I am not great at reading maps. But I am learning. Each day I know a little more about our journey. Each day I know a little more about my son.

And there are certainly moments of hopelessness along the way, but there are moments of pure bliss too.

I think that smiley face balloon was an ironic reminder that life does not have to be perfect to be wonderful. But it does have to be wonderful.

Pivot.

People often ask what it is like to parent a child on the autism spectrum. And the truth is that this is a complicated question with an even more complicated answer.

It is both wonderful and awful.  It is both exciting and terrifying. It is both fulfilling and draining. It is the biggest and longest and hardest game of give and take that I have ever played. Except, this is not a game. This is my life.

In this life I have learned to juggle the feelings of being rooted in one spot and  completely detached and drifting at the same time. This is a feeling I know well. I call it “pivot”.

Pivot is my way of life. It is how I navigate the hurdles and obstacles that we encounter along our uncertain journey. Pivot is how we are able to celebrate the wonderful moments. Pivot also helps us to prepare for the hardships. Pivot is how I learn to be strong enough and wise enough and swift enough to be all of the things that I need to be. All of the things I want to be. Pivot helps me to be a mother; to parent a child with special needs. And pivot understands that this is not all that I am. Pivot is the way I manage to be a mother and a wife and a friend and an employee.

Pivot is about having one foot firmly planted in something; in anything really. Pivot is placing that foot down with strength and confidence. Pivot is knowing that the planted foot is rooted deep inside of the core of who I am. It is the piece that keeps me connected; despite the bumps and hurdles I will inevitably face. Pivot is fighting to keep that foot planted in every moment of every day. It is knowing what is at stake and fighting like hell to hold my ground. To stare fear and worry and uncertainty in the eye. To push that planted foot down deeper and deeper. To rise time and time again.

Pivot is allowing the other foot to roam free. To remain agile and ready to react. The other foot is not rooted in anything. It knows that from one moment to the next it can go quickly in a million different directions. The other foot has made a home in the unpredictable chaos that swirls all around it. It knows better than to get too comfortable in one spot. This foot is not about balance or stability or feeling centered; this foot is about survival.

You see that is what it means to pivot. You keep one foot firmly planted while the other foot moves about.  And, it is not always pretty. In fact, in some moments I am certain that I look completely ridiculous pivoting around my life. But my pivot is not about anyone else. I do not pivot to look good. I do not pivot to give the illusion that I have it all together. I do not pivot because I have run out of things to try. I pivot because pivoting is the only way I can be all the things I need to be.

And pivot is certainly a physical metaphor. There are moments when I physically need to hold my ground and brace for impact. But there is an emotional aspect of pivot too.  I pivot on the inside, maybe even more than I pivot on the outside. Emotionally, it is important to root inside of the things that are real. Love, relationships, strength, courage. I find the real things inside of me and root myself to them. My internal pivot is all about being mentally tough enough to overcome something that is hard. So much harder than I ever thought it could be.

My love for my son is my proverbial “planted foot”. I am rooted in my love for him. He is the center of this world along the spectrum; and we all pivot around him. I keep him in my focus as I struggle to hold my ground. I let myself feel overcome by love and hope and fear and wonder. I keep my gaze pointed directly at my son. I channel my focus to him; I connect myself to him and my love for him becomes the core of my pivot. And with each day I root myself more deeply into my connection to him. And each day that connection makes me strong enough to keep going.

And in my emotional pivot my other foot flies free. It follows high and low and in and out and fast and slow. It is as unpredictable as the journey it travels. And in so many  moments I am thankful for both feet. The one that steadies me; and the other that readies me.

I pivot every day. One foot firmly rooted in the things around me that are real. The things that make me who I am. They keep me centered and focused. They keep me present and alert. I keep the other foot loose. Ever ready to spring into action. Acutely aware that every moment can change on a dime.

I learned how to pivot to survive something that I did not feel strong enough to face. And now every day I pivot all around my life. Rooted. Focused. Present. Agile. I pivot, and you can too. Root yourself in something real. Stand your ground. Do not back down. And not matter what life throws your way; pivot.

JS pivot

Autism, The Calm and The Storm

The permanency of the diagnosis has always been the hardest part of my son’s autism. Nearly three years ago at age 2 when we first received his diagnosis; and still today.

“Lifetime diagnosis.” My son has autism spectrum disorder, and he always will.

No matter how many times I say those words, they never feel more natural. It does not get easier. You do not wake up one morning with a total acceptance that autism is and always will be a part of your life.

Autism is a journey; and the acceptance is a journey too. You learn to face it a little bit at a time. At first because you have to. And then slowly over time because you realize that acceptance is an important part of moving forward.

You learn to be smart because being smart helps you be strong; and not because you want to outsmart autism. You learn to run because you want to keep stride with your child; and not because you want to outrun autism.

You start to see autism for what it really is; a race with no finish line. A journey with no end. I use these words over and over again. I say them to myself; and I say them to others. I know that forgetting those words makes this journey harder. Forgetting the simple truth that they hold is just too painful.

But I am human. And from time to time I make mistakes. From time to time I forget to take my own advice. I forget because sometimes forgetting feels so good.

Sometimes the behaviors and meltdowns are minimal. Sometimes we can more easily predict and anticipate the hurdles. And in those moments it starts to feel like a rhythm. An ease. It is not perfect, but it is so much better than so many of the moments that came before. It is a welcomed calm.

And tangled up in the goodness of the calm, the storm feels so far away.

I know better. I know that there is ebb and flow. I know that this journey will take us up an down and in and out and around and around over and over again. I know that the unpredictability of it all is the only thing that is predictable.

But I also know this; sometimes the good is just so good. Sometimes it is so welcomed and necessary after the bad. Sometimes giving into the good is an important part of the survival. And, for a few moments in time it is almost the way I imagined it could be. It is almost a version of normal that I thought I may never know. And the unexpected comfort of an unfamiliar normal is so alluring.

I dive in. I revel in the ease of it all. I begin to count on the ease. I make plans that work within the parameters of our new found rhythm. I allow myself to picture a life without meltdowns and behaviors. I crawl up inside of the goodness and the calm and I think that maybe I could just live there forever.

But inevitably, the storm will hit; because it always does. And the storm will be so much worse than before. Not because the intensity or frequency will be worse than the last storm, but because I will not be prepared. My guard will be down. I will be too immersed in the good to prepare myself for the bad.

And when the storm settles in all of the familiar feelings set in. Anxiety, sadness, anger, fear. And before I know it I am in the eye of the storm. Face to face with the reality of autism. The journey that does not end.

And I feel so many things. Mostly I feel foolish. I feel silly for being duped by a few weeks of good behavior. For letting myself believe that we could really manage the autism out of our lives. That we could somehow outsmart and outrun it. I feel foolish for the hopefulness. And I feel foolish for all of the plans I started making in my head. Plans that may never be a part of our real normal. Autism normal.

I feel foolish, but I also feel sad. Sad because the reality that this journey has no end never hits harder than when you let yourself think, even for a moment, that it just might.

A lifetime diagnosis. A lifetime walking this journey. Of questions and uncertainty. Of doing the best we can. A lifetime of moments. Moments of hope and moments of hopelessness. Moments of joy and moments of pain. Moments of strength and moments of weakness.

And all of the moments will have one thing in common; my son has autism. It is not going away. And some days it hurts to remember that. Some days autism seems so far away. And then there is is; sitting in the middle of everything I love.

Today I tell myself to always remember. To protect myself from the storm. To find joy in the good moments without losing my guard. A lifetime journey for a lifetime diagnosis; one single step at a time.

JS

The Gift

People ask, “what is the hardest part about having a child with autism.” And the truth is, the hardest part about having a child with autism; is having a child with autism.

Because it is all hard. In different ways and at different times. I cannot pinpoint one thing. One single piece of this journey. One moment of pain or struggle. One symptom. One behavior. One thing that we have lost along the way. One person we have lost along the way. One hurtful or insensitive thing said by someone we love. One way that we have changed and adapted our life.

No, I cannot pinpoint the hardest moment for you. Because in a way all of the hard moments and behaviors and people have become part of one big jumbled memory.

Autism is not neatly organized into clear and consistent traits and behaviors. It is not always easy to recognize or label.  Autism is not the same from day to day. It may not look the same or sound the same or feel the same. And the world, our world, where autism lives is not the same every day either. Autism is tiny little pieces of a million different things. And the pieces are constantly changing. Things that fit with ease one day may not fit the next day. And, pieces that you thought may never fit, all of the sudden fit together perfectly.

The fit is unpredictable. Because the pieces are unpredictable.  Because the journey is unpredictable. Because autism is unpredictable.

And that is hard in a way that I never understood before. To look at someone who lived inside of me. To know him so deeply in one moment. And in the next moment to feel so far away from him. To feel like a visitor in his world. To even begin to accept the idea that he and I live in different worlds.

And I know how difficult it must be for you to imagine what this feels like.

Pretend I give you a gift. It is the most precious and amazing gift you have ever been given. You love and cherish it in ways you never imagined possible. The gift becomes a part of your life; a part of you.

The gift is a blanket.

Beautiful and soft and welcoming and ever-ready to invite you into its warmth. It brings you comfort and safety. You wrap up inside of it and lose yourself a little. You begin to forget about anything that happened before the blanket. And just as you wrap up and start to live inside of the comfort of the blanket; it changes.

Now the gift is a picture.

Still beautiful, but no longer soft and welcoming. All of the sudden being snuggled up inside of the gift feels un-natural. Un-welcome. And because the gift has changed; you change. You interact with it differently. You hang it on the wall. You admire the way it ties everything around it together. As if maybe it was always intended to be that way. You can no longer wrap up inside of it, so you sit near it and admire its strength and beauty. It’s presence. The way it makes everything look different. And just as you can no longer imagine the room without the picture; it changes.

Now the gift is a balloon.

You are overjoyed to interact with the gift again. To hold it in your hands. You carry the balloon around with you everywhere you go. You admire the way it stands tall. The way something knocks it down, and it pops right back up. You see the balloon beginning to lose air. You worry about the balloon. And just as you drop your head in worry, the balloon escapes your grip. It sails up to the tallest corner of the room. And there it stays. Just out of your reach. As you make a plan to rescue the balloon; it changes.

Now the gift is a puzzle.

It takes hours to put the pieces together. Everything must be just so. As you manipulate the pieces you feel a mix of every emotion inside of you. You feel anger and frustration and joy and sadness and exhaustion. You consider quitting. You consider putting the pieces back in the box and storing them away on a shelf. You wonder if you are up for the challenge. But, you push on. And piece by piece the puzzle comes together. It is not easy; because nothing truly wonderful in life ever is. But this is your gift. And when you are given a gift, you just cannot give up on it.

How is it so? How it is that one gift can be all of these things? A warm and cozy blanket. A strong untouchable picture. A light and airy balloon just out of grasp. And, an intricate and complicated puzzle.

The answer is autism. Autism is all of these things and so many more. It is waking up each morning unsure of what we will find. Unsure of what gifts lie ahead of us that day. It is being ready for anything. Rolling with whatever comes our way. It is learning to look at our son with open eyes and a clear mind over and over again each day.

Pretend I give you a gift. The gift is complicated. The gift is unlike any other gift you have ever been given. But it is your gift. Your gift to love and cherish. Your gift to teach the world how to love and cherish it too.

I was given a gift. My son is a gift. And I love him. I love him when he is soft and comforting.  I love him when he is strong and rigid. I love him when he is present.  I love him when he is withdrawn. I love him when he is messy and complicated.

And maybe that is the real gift. Unconditional love.

JS

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