10 Autism Lessons You Will Not Find in a Textbook.

lessons 2.jpgWhat I knew about Autism two years ago was textbook at best. I knew that Autism is a sensory processing disorder and that symptoms often present in young children. I knew that prevalence is higher in boys than girls. I knew of the common symptoms such as rocking, speech delays, rigidity, and social implications. I learned these things from a textbook in college.

What I know about Autism today is vastly different. Today my information comes from the front line as I stand beside my four-year-old son with Autism Spectrum Disorder.

My autism education in an on-going process. I learned many things right away; survival tactics if you will.  Other things trickled in more slowly as we began navigating the spectrum.  And there are many things that I am still learning.

I keep these lessons close to me. I use them to navigate our journey forward.

These lessons do not come from a textbook. They come from the head and the heart of a mother standing beside her child. Learning. Surviving. Embracing the spectrum.

Lesson 1:   You will never know what Autism feels like. I need my son to show me his world; just as he needs me to show him my world. But we are both just visitors in each other’s world. And, living in a different world from your child is unnatural and scary. But that is what parenting a child with autism is like. We are both trying and struggling to exist in a world that is unfamiliar to us.

Lesson 2: Autism sees no boundaries. Despite all of your defensive efforts autism will spread into every corner of your life. That is ok. It is better to know that it is everywhere than to wonder when and where it may appear.

Lesson 3:  Choose your team wisely. You cannot walk this journey alone. Surround yourself with people who will build you up and make you stronger.

Lesson 4: Symptoms and behaviors come and go. And sometimes, when you think they are gone…they come back. This is just a fact. You can strategize and extinct and redirect until you are blue in the face. Sometimes behaviors will go away. Sometimes they will stay away. Sometimes they will come back.

Lesson 5: Stop apologizing! You do not owe anyone an apology. Not for the behaviors of your child. Not for your own struggle to hold it all together. Not for the appearance of your house. Not for the unanswered text messages. Not for the doubts and fears that live inside of your heart. If you keep apologizing then you will keep believing that you are doing something wrong. You did not choose this path; you were chosen. Stop apologizing!

Lesson 6: Everyone needs a break from time to time.  Breaks are not a sign of weakness. Breaks are the way we lift our heads high and live to fight another day. It is easy to get caught up in the schedules and the treatment hours and the progress. Sometimes I look at my little boy and wonder how I ask him to do all he does each day. So I divert from the schedule, and I give him a break.  And, I give myself a break.

Lesson 7: If you have a power struggle with autism; you will lose. Your child is not in control, you are not in control; autism is in control. Pick your battles. Care less about controlling the autism and care more about controlling your reaction to autism.

Lesson 8: Do not let yourself be fooled by a good day or week or month. There will be harder days ahead. Find a balance between optimism and reality. Be unapologetically optimistic when things are going well.  CELEBRATE! You and your child put in a lot of hard work and you deserve the good days. But, while you celebrate keep your mind and your heart ready. Stay focused and prepared for the harder days ahead.

Lesson 9: Some of the pieces you love the most about your child may be the autism. You have to take the bad with the good. And believe me, there is plenty of bad. But there is so much good too.  I love the careful and methodical way my son looks at things. The way he sees through to the core of everything. I love the way he guards the words “I love you”. He seems to know exactly when I need to hear them the most. I love the way his energy changes when he feels safe and secure snuggled next to me. I love the way that he catapults himself into the world; oblivious of his crash landings. This are pieces of him. Pieces of his autism.

Lesson 10: This journey is a marathon and not a sprint. There is no prize for getting to the finish line first. Why? Because there is no finish line. Autism is a journey that has no end. It takes you to the point of defeat and then it pulls you back. It shakes you to the core and then wraps you in a gentle and familiar hug.  It is your villain and your hero. Your sentence and your pardon. It becomes the only thing you know to be true, and there is a comfort in that unexpected certainty.

These lessons are my keepsakes from this journey. Proof of obstacles overcome. Testaments of triumphs and defeats.  There is so much more to learn. So much of this journey still lies ahead.  So many obstacles. So many triumphs. So many defeats.

But each day I step into this journey a little wiser. A little more filled with the lessons I have learned along the way. A little more ready to face the road ahead.

No, I did not learn these lessons in a textbook.  But they do represent something that is real. The quest. The pain. The perseverance. The power of love.

JS

Finding a Voice for Autism: Let’s Talk About Things That are Real!

People struggle to talk to each other about things that are difficult. It is easy to talk about things that are on the surface. They are easy to see. Easy to define. Easy to relate too.

The deeper things are harder. Harder to see. Harder to define. Harder to relate to. And so we struggle to connect ourselves to the deeper things inside of the people we are close to.

We spend our time worrying about saying the right thing.  We fear that we may say the wrong thing. And too many times these worries and fears result in saying nothing at all. But, the empty space of silence speaks volumes. It feels louder and more painful than any of the wrong things that may have been said.

I know in my own life I have struggled to find the right thing to say to the people closest to me. I know that have been fearful of saying the wrong thing.  I have allowed an empty silence to form between myself and the depths of the pain and struggles of people I love.

And the reason is quite simple; silence felt safer. I told myself that silence was safer for me and for the people close to me. I let myself believe that. Believing that protected me. And, I thought it protected the people that I loved too.

And then something happened that changed my belief. Changed me.

When my son was diagnosed with autism I felt the silence. I saw the pain and fear and heartbreak that slowly filled the hole of silence between myself and the people who could not talk to me about my life. Not just my surface, my real deep down life. The silence grew louder and louder. Too loud.

And then after the noisy silence, there was nothing left. The space was too big. The silence too. vast. The unspoken works too many.

The truth is that silence is not safer. It is easier. It is more comfortable. It is simpler. But, it is not safer. Because when we cannot talk to the people we love about our lives in a real and authentic way, we are not safe. We are hiding. We are avoiding. We are concealing. But, we are not safe.

I learned quickly that people needed me to give them permission to talk to me in a real way about my son’s autism. I learned that it would be my job to sort through all of my own uncertainty to help other people navigate this journey alongside us.

This  felt daunting in the beginning. It made me angry that I had to put my own pain aside to help other people talk to me. I heard people circle around the subject and somewhere inside of my head I sat screaming “JUST ASK ME!”

As time moved forward I took a more proactive role. I found my voice.  I knew that I both needed and wanted to talk about autism in a real way. So I initiated those conversations. I gave the permission people needed to talk to me. I found my voice to speak up when I was not comfortable with something. And one conversation at a time I worked together with the people in my life to talk about autism in a real way.

The reality of this journey is that very little is left unchanged. Many relationships have changed. Some relationships have ended; for a million different reasons. Some relationships suffered from the empty silence. Some relationships could not handle my need to talk about autism in a real way. And some relationships ended for no good reason at all. And, just as we have learned that things change along this journey, we have also learned that some things end.

I understand the fears you may have to talk about things that are real. I know that you are worrying about saying the right thing. I imagine you are fearful of saying the wrong thing. I recognize that it feels safer to say nothing at all.

I want you to know just how loud the silence is. Just how much it hurts.

Find a way to talk to the people you hold dear about the real things in their lives. And the real things in your life. We need to give each other permission to talk about the things that are deep inside of us. To trust each other with the things that weigh heavy on our hearts.

To remove the worry. Remove the fear. Remove the silence. To give words to things that are real and hard. To set them free. To set ourselves free. To truly be safe.

JS

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The Day My Son with Autism Crawled into a Box.

Today I went to my son’s school to participate in his science experiment presentation to his class. As my husband and I walked into the school I recalled the countless times in the seven short months since 4K began that I walked these halls. Orientation, parent teacher conferences, more IEP meetings than I can count, concerts, forgotten shoes, and early pick-ups. This was a place I would come to know very well over the course of my son’s education.

Today I walked down the hall excited to share a special day in the classroom with my son. As I walked into the classroom I saw my son. He was sitting on the floor in a cardboard box. While the rest of his class played together outside for recess, my son sat in the classroom in a cardboard box.

I looked from my son over to his teacher. She saw the look of surprise on my face and explained that he was not happy with his place in the line-up for recess resulting in a meltdown. He became so worked up that he could not recover.

And, because he could not recover, he crawled into the box. A place where he felt safe.

There are a lot of moments as a parent that test your endurance; both physically and emotionally. I have experienced incredibly high moments and I have survived extreme lows. I have seen and heard things along this autism spectrum journey that should not be a part of any parent’s journey. But they are a part of mine. They are carved into my brain. They are burned into my heart.

And today, I just cannot see past the vision of my son sitting alone in the cardboard box.

You may be wondering why there was a cardboard box in the classroom. But all parents know that children can find joy in the simplest of things. The box becomes whatever they need it to be. A fort, a house, a treasure chest. Today my son needed that box to be a hiding place. And so he crawled in and hid from the world.

What they do not tell you after an autism diagnosis is that it gets much harder before it gets easier. And then after it gets easier, it gets harder again. They do not tell you the pain that you will experience over and over again each time that you are unable to help your child.

As my son grows older and his same aged peers grow older; I feel the presence of autism in our lives even more than I did at the beginning.

When my son was diagnosed at age two the concept of autism seemed so abstract. I could certainly see his symptoms with my own eyes. I lived those symptoms alongside him every day. But, most children at ages two and three develop at different rates. So, the differences between my son and his same aged peers were more easily muddied in the water.

Today the differences are crystal clear. I stand in the morning school line with my son and watch in agony as he struggles to make social connections with his peers. I watch as other children carry on two-way conversations with ease. I watch as my son drops words and phrases into the world. And his words land like rocks.

The children do not understand the way he communicates. And because they do not understand, they cannot communicate back to him. And I cannot help but relate to these young children, because I myself often struggle to understand the way that my son drops his words into my own life.

When most people hear the word “treatment” they think of something that helps you get better. But, I think using the word treatment to describe autism therapy is misleading. Because autism changes. It evolves. It expands and retracts. It goes up and down and then back up. It can be everything and nothing. But it does not get better. We get better. We get stronger. And we help our son to be better and stronger too.

Today I walked into my son’s classroom and saw something that I was not prepared for. After two years on this journey I am still not prepared for those moments. The moments that cut to the core of your heart. Because who can prepare for that? What experience in this world can help a mother prepare to see her child in pain?

The answer is simple; no amount of time or experience will make those moments any easier.

As I reflect on the moment now, I realize the irony of my reaction to the sight of my son tucked away in that dark box today. I did what I always do when I see my son struggling or in pain; I crawled into my very own emotional box. A box that I keep tucked deep inside of me. A box that is for me and me alone. There in the safety of that box I let myself heal. I hide from the world and the images that I am too scared to face. The sounds that I do not want to hear. I stay there in the comfort of that box until I am better. Ready to face the world.

And then I step out of that box inside of me and re-enter the world. Ready to move forward.

My son eventually emerged from his cardboard box today. Together we presented his science experiment to his class. He felt joy and pride as he held the spotlight in front of his class.

I may not be able to get the image of my son in that box out of my head, but I do understand it. My son went into his box to escape the world and he came out better. Ready to face the world.

This is one of the many things that I am learning from my son. Sometimes we need to crawl into a place where we feel safe. And come out when we feel better. Ready to face the world.

JS

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Autism and Dental Hygiene

As I sat in the conference room of the pediatric dental office today, I could not help but remember the last time I sat in a conference room for something pertaining to my son’s health. It was just over two years ago at the conclusion of a long day of diagnostic testing. I sat in that conference room and learned that my son had autism spectrum disorder.

I knew that today would be different. I knew that we are just there for a dental procedure. I knew that I would leave here and my life would be relatively unchanged.  But I still could not help but wonder if my last conference room visit and this one were somehow linked. Is the autism diagnosis what brought us there today?

I know that dental work is a normal part of life. I know that there are some things in life that do not give way to age or gender or ability level. I know that hygiene is a part of life. I know that part of my job as a parent is to teach my children about personal hygiene. To help them learn to care from themselves. Just some of the many tools they will need to succeed in the world.

Despite the countless reassurances from the pediatric dentist and his staff; I find myself questioning the truth behind what led us there today.

Sure, teeth brushing and dental hygiene is not the easiest or best part of our day. Most days we need to use timers and social stories and praise just to get him to brush his teeth. Most days it is a game that is 90% play and 10% actual teeth brushing. Most teeth brushing sessions end with a meltdown as my husband or I inevitably take control and brush his teeth. This leads to inconsolable crying. Which leads to hitting and slamming and yelling. And when it is all over we rinse off the tooth brush and put it back in its place to do it all again the next day.

Teeth brushing is hard for us. Harder than it needs to be. But then again, a lot of things are harder than they need to be. But, we push through it because that is our job as parents. We do all of the things that our children need, even the unpleasant ones.

And despite our efforts. Here we are. Questioning if we did enough. Questioning if we let autism and the daily challenges we face get in the way of emphasizing the importance of this personal care.

I question myself because that is what this journey is. Day in and day out we question everything we do. We wonder if we have done enough. We imagine how we could possible do more. We are in a continuous pursuit for information. For answers to the questions that fill our heads.

When our journey lead us to a pediatric dentist specializing in children with special needs, I thought I would be comforted by the new information we learned.

I learned that a large population of the world is prone to decay causing enamel. I later learned that we have a prevalence of this in both sides of our family. I learned that the dentist can tell by looking at the decay if it was caused for environmental/life choices or enamel. I felt a ping of relief to learn that our son did in fact have the decay prone enamel.

This should have been a relief. But I have learned that there is very little on this journey that brings true relief. Because I cannot help but wonder if things were different, if he was different, would we still be here today. If autism was not part of our journey, how many difficult experiences could we avoid? How much pain could we avoid? How much more could we protect our son? Ourselves?

In my heart I know that my son’s autism journey lead us here today. Autism may not have caused the enamel, but autism is not innocent here.

Autism is the reason personal hygiene care is so difficult for us. Autism is the reason we struggle to tears many night to brush his teeth. Autism is the reason it took 4 years for my son to sit in a dentist chair. Autism is the reason that after sixty minutes at the dentist they were still unable to look in his mouth. Autism is the reason that I had to restrain my son with the help of three dental hygienists so that the dentist could take a look. Autism is the reason that my son has to go under full anesthesia to take pictures of his teeth and then take corrective action. Autism is the reason he woke up from anesthesia feeling out of control and scared. Autism is reason he looks in the mirror and screams at the site of the silver caps that do not belong in his month.

No, autism is not innocent. Each and every one of these things are the autism. I know that, and still I can do nothing to change it.

So I ask questions that I know will only hurt me. Questions about what might have been.  I imagine a life and a journey with less pain. For me, but mostly for my son. I know that asking these questions is normal. I also know that no good can come from it. I cannot turn back time. I cannot change the course of our lives. Our journey. His journey.

Our journey will test us time and time again. Today my journey called on me to explain something to my son that he could not understand. Today my journey called on me to rock my little man in my arms as he drifted off to sleep. Today my journey called on me to stay calm despite my fears. To take away his control despite his intense need to be in control.  To let people touch him despite his dislike for being touched.

There will be a lot of hard days along this journey. Today was a hard day. Today I remind myself of how far we have come. And how far we will go. I am stronger and more prepared to walk our journey because of data like today.  That might sound wildly optimistic. And maybe it is. I cannot control a lot of things, but I can control the way I embrace our journey.

Today was hard. A lot of things are hard.  But I am still wildly optimistic. Every. Single. Day.

JS

Brush Teeth

 

Becoming an Autism Mom.

I realized early on my son’s autism journey that I was going to have to become someone different.

I was always a planner. A person prepared and ever-ready to jump into action and solve unforeseen problems. In that way, this should have been an easy part of the journey for me. Except it was not. It was really really hard.

To be honest, nothing about this journey is easy. But, I have come to learn that it is better that way. It keeps me focused and alert. If things were easy then I could ease up. Lose focus. And then I would be unprepared. Too unprepared for this journey. Too unprepared for autism.

Learning to be an autism mom was a process. In the beginning I felt completely overwhelmed. Nowhere near the woman and mother I would need to be for this journey. To help push my son forward. To fight for my family. To survive.

I did not like feeling weak. Feeling out of control. I felt uneasy in those early days. Living each day with the knowledge that I was not strong enough. Patient enough. Faithful enough. Prepared enough. I was not enough to walk this journey.

That’s an empty feeling. And one I desperately needed to rid myself of.

But, where to begin?

I looked at all of the pieces of myself. And, I looked at all of the ways this journey would call on me. I searched for the place to start. The place to focus my efforts of becoming enough.

I told myself that strength and faith and courage would come with time. In that moment what I needed more than anything else was a plan. To be prepared. Informed. Ready.

So I did what always came naturally, I made a plan. I immersed myself in the planning. The scheduling. The rigidity and unrelenting nature of the treatment plan became my salvation.

People could call me weak. They could tell me to find faith. They could will me to be braver. But they could not tell me I did not have a plan.

The most important part of my journey to becoming and autism mom was accepting that so many things would be out of my control. Change and obstacles are constant on this journey. The journey is 30% planning, 60% adaptability and 10% dumb luck.

As I planned and adapted to obstacles I started to change. With each plan, and each obstacle, I grew stronger. And filled with strength I started to have faith that I could in fact walk this journey. And filled with strength and faith I felt the courage I needed to push forward.

And one day I woke up and realized that I was an autism mom. Prepared. Adaptable. Strong. Faithful. Courageous. Enough.

The truth is there is no “right” way to become something that you are not even sure you are “enough” to be. So just pick a place to start. And do not stop. Do not stop until you are enough. Because only you can define your own enough.

Now, I am an autism mom. I was an autism mom by definition the day my son was diagnosed (and earlier really). But it took a while for me to truly become an autism mom in the way I needed to be. The ways that really mattered.

I did not choose this journey, but I choose the way I respond to it. In the beginning, and still today. I choose to be enough. And for me, that is enough.

JS

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