There are many things that they do not tell you after an autism diagnosis. You have to go into the world and learn them on your own. And we learn something new nearly every single day. We experience a new symptom. We encounter another obstacle.

We have learned a lot about the complexity of the dynamic between our son with autism and our neuro-typical son. Their dynamic shifts often. And, I watch with baited breath. I try to exist somewhere between hopeful optimism and nervous caution.

Our sons are 22 months apart. We started noticing our first born son’s symptoms of autism at 17 months. At the time I was 4 months pregnant. I had no idea just how twisty the road in front of us would be. And maybe that is a blessing.

Maybe that is how I made it through my pregnancy and delivery. Maybe that is how I pushed forward through breastfeeding and working full-time. Maybe that is how we moved our family into new home. Maybe that is how we survived a year or assessments and diagnostics as under-slept parents of two kids two and under.

We received our oldest son’s autism diagnosis eight days before our youngest son’s first birthday. It should have been a time of joy and celebration. Instead we found ourselves panicked; overcome with questions and fears and an insatiable desire to know everything.

In that quest for information we learned so many scary things for our oldest son and the road ahead of him. And if that fear and worry was not enough we quickly learned something that could complicate this journey even more.

We learned that there was a 20% chance that our youngest son could have autism too.

The thought of doing it all over again was so painful. I looked at my sweet one year old and my eyes filled with tears at the thought of going back to the beginning. Reliving the early detection. The appointments and assessments. The referrals. The wait lists. The fear. I did not think I could be strong enough to do it again.

Yet we knew that we were still five months from the time when we started seeing symptoms with our oldest son. It was a waiting game. It seemed that waiting and worrying were two things we just could not escape.

As each day passed we were encouraged as our youngest son met and surpassed milestones. He acquired new speech and language skills with ease. By the time he turned eighteen months he was talking and regularly increasing his vocabulary.

But more so than skills and milestones; there was something else. Something we could not put a finger on. Call it intuition, but we just knew. We knew that he did not have autism.

It was a relief. A relief bigger than I can explain.

But in a way that people who do not live with a person on the autism spectrum cannot understand; the relief was short lived. Because even though he did not have an autism diagnosis; autism is a part of his life. Autism causes behaviors and meltdowns and heartbreak and fear for everyone in the house. There is one person in our house with an autism diagnosis, but the symptoms effect all of us every day.

As the boys get older dynamics seem to shift and change even more.  Lately we struggle a lot with our youngest son as he navigates through the autism in our house.

He mimics the behaviors every single day. The wiggles, the behaviors, the meltdowns.

He sees his brother receive so much of our time and energy. He sees people come in and out of our house each week to spend 25 hours of “special time” with his brother. What he does not know is that this “special time” is hard work.  He sees his brother leave the house for an “adventure”. What he does not know is that this “adventure” is to the clinic to check in with his ABA coordinator.  He hears mom and dad going in and out of his brother’s room for “goodnight time”. What he does not know is that “goodnight time” is a desperate attempt to help his brother through a meltdown.

He sees all of these things and to him it feels like he is missing out. He sees his brother get “exciting” things. He thinks that his brother gets these things because of his behaviors and his symptoms. Because he is different. So, he tries to be different too.

But his different is not the same. He does not have a sensory processing disorder. He does not have impulses inside of him that make him “need” things in specific ways. His language skills are age appropriate. He is in control of his body. He does not wiggle from somewhere deep inside. He has social age-appropriate relationships with all of his peers.

It is hard to watch. It is frustrating. It is painful to see our neuro-typical son mimic the behaviors of his brother with autism.

It is hard and painful. Because that is what autism is. It creates vast and unpredictable spaces in our life. And then fills them in with things that are new and unfamiliar to us. And we all adjust. We keep adjusting. We live in a perpetual state of reset.

I have one son with autism. I have one neuro-typical son. And right now they are both displaying autism behaviors. That is the heartbreak that this journey brings every single day. I cannot explain because I do not understand it. But I live it. I live it every day.

 

 

 

Fear is a part of my life every day as a parent of a child on the autism spectrum.

Sometimes my fears are completely rational. And sometimes they are totally insane. At times a specific incident or behavior awakens the fear inside of me. Other times the fear sneaks in out of nowhere.

My fear is unpredictable. Often unrelenting.

The fears fill my head as I navigate through the hectic schedule of the day. And, they are present at night as I drift off to sleep. Fear is a part of every day. All day. The fear is never ending. Fear is one true thing I can count on along this journey.

The truth is, everything about my son’s autism spectrum disorder terrifies me.

The fear started long before the diagnosis. I was afraid of the answers that I did not have. But, I was afraid of the questions too. Admitting out loud that there were things about my son that I did not understand. Things that I knew were not typical. I feared the parenting journey in front of me. Sometimes I feared the journey itself; but mostly I feared that I would not be enough to make the journey. To survive the journey. And that kind of fear is powerful in all the worst ways.

Each fear led to more fear. And with every fear I grew more and more uncertain of the journey. Of my strength. Of myself.

After diagnosis my fears only increased. Fear occupied every available space in my brain. I feared things in the present: word counts and milestones and same age peer interactions. And I feared things far in the future: college and prom and marriage. I needed to bring all of the fear to the surface. I thought that if I could own up to every fear then somehow I could get ahead of fear altogether.

I was wrong.

As my son gets older it is increasingly difficult to quiet my fears for the future. As toddlers the lines that distinguish one child from another child are blurry. Children develop at different rates and acquire skills sporadically. And when they are learning to crawl and walk and talk it is easy to explain away the differences that you may see from one child to the next.

But as children get older the lines distinguishing children grow more distinct. And with every day that passes the differences between my son and other children are clear. Clear to me. Clear to my son. Clear to other children.

And, as the awareness to the differences set in all around us my fear ignites. I fear for the obstacles he will encounter. I fear the things people will say to him. The way people will treat him. I fear the way he will be perceived. And, the way he will perceive himself.

My fear takes flight.  It get very big. Very quickly.

And then in an instant something catches my attention. I overhear an exchange between my sons. I see my son wiggle in the face of his younger brother. I see my youngest son uncertain how to react. And in some moments I see him choose to be unkind in response. Because sometimes being unkind is a quick and easy way to react. Sometimes being unkind feels good in the moment. Sometimes being unkind helps you feel like you are taking back the power.

I understand all of the reasons why my youngest old son is unkind from time to time. But that understanding does not help my fear. Because if my own son struggles to show kindness to his brother, then how can I expect the world to show him kindness?

It is a real fear. A fear that I have every single day. About the world. About the people in the world. About their capacity to understand my son. Their ability to look beyond the autism. To look beyond the symptoms and the tendencies. To see the amazing little boy so filled with joy and love and compassion.

And when I see my youngest son be unkind it reminds me of the important job I have ahead of me. The important job all parents and grandparents and teachers and neighbors have ahead of them.

The job is simple: teach kindness without boundaries and exceptions and limitations. Pure and simple kindness.

Explain that the easiest thing to say may not always be the nicest thing to say. Teach the importance of thinking first and speaking second. Because sometimes quick reactions make us feel good in the moment, and make us feel bad down the road. Teach that you will never regret the time that you were kind and compassionate to someone in need. That character is more important than popularity. That a moral compass is a possession more valuable than any money can buy. That compassion and kindness and acceptance are contagious. Teach them to spread it everywhere they go.

I will never let go of my fears for my son and the obstacles that he will surely face. Those fears are now a part of the fabric of my life. But what I can do is infuse each fear with hope.

Hope for a world filled with kindness. Hope for a world free form bullying.  Hope for a natural acceptance of difference; rather than a hyper focus on difference.

Fear is powerful; that I know for certain. But from somewhere deep inside of me I believe that hope is stronger and more powerful than fear will ever be.

So hope with. Fear with me. Teach kindness with me.

 

 

My husband is a great dad. He is in the trampoline jumping and laughing with our silly boys. He is ever-hunting for new hiding spots in our backyard for the next game of hide and seek. He builds an impressive fire and can roast marshmallows with the best of them. He is so much more than present. He is engaged and active in real moments with our sons every single day.

He is a great dad. And I love him for that. But he is also an exceptional autism dad. You may not think there is a difference. And that’s ok. I am happy that you have never had to witness the difference first hand. But I know the difference. I know the difference because he is a dad and an autism dad just like I am mom and an autism mom.

Our life presents a lot of really wonderful moments. Moments when my husband can just be “’dad”. But there are a lot of really challenging moments too. In any given week I see my husband step up to the autism plate a million times. In those moments he has to be so much more than he ever imagined being.  He is an autism dad.

I see him get hit across the face, take a deep breath, and keep working through a strategy. I see him remain calm as things are thrown and broken. I see him try every day to understand something that makes no sense to him.

But more important than the things I see are the things I feel.

I feel the comforting touch of his hand on my shoulder when I am hunched over in tears. I feel his strength when he pulls me back to my feet. I feel my load get lighter as he takes on more and more to help.

My husband works out of our home in patient care. He has limited access to phone and email during the day. It is difficult for him to participate in phone calls and meetings for our son’s treatment. Because being an autism parent is a full-time job. On top of the full time jobs we work to afford the house and the resources needed for treatment.

He comes home from long days at work and dives head first into the autism schedule. He drops his coffee thermos on the sink and jumps immediately into the chaos. And the chaos is rampant.

Amidst the chaos he listens carefully to updates from the day. He asks questions about new strategies. He inquires about calls and emails exchanged with our ever-growing treatment team. He seeks deeper understanding of the things he does understand.

He does this every day. He walks this journey every day. This is his journey every bit as much as it is mine.

I have witnessed so many moments that I am certain he never imagined as part of his fatherhood journey. I can still see the look in his eyes when we sat around that table and learned of our son’s diagnosis; something between heartbreak and fear. I remember the agony on his face the day our son shattered the second television in six months. I feel his pain as he watches our son struggle.

I cannot protect him from these moments any more than he can protect me. So we do what we can do. We love each other. We support each other. We remind each other every day that life does not have to be perfect to be wonderful.

My husband is a fantastic father. And I love watching him be “dad” to both of our boys. But I love him the most when “autism dad” is in action. In the moments when he is implementing a behavior strategy to redirect our son. In the moments when he consoles our youngest son after he has been hit during our oldest son’s autism meltdown. In his own moments of weakness when he still finds the strength to give me encouragement to keep pushing forward.

The distinction between dad and autism dad may not seem important to you. But in our house mom and dad were not enough. Life needed more from us. Our kids needed more from us. And so we became the parents we needed to be to walk this journey.

And sometimes even autism mom and autism dad are not enough. Sometimes we have to be occasional bad-ass autism warriors. So we do that too.

I, autism mom, choose him, autism dad, to walk this journey alongside me today, tomorrow, and always. I am thankful for his super power. Thankful for his super patience. Thankful for his super love.

He is super. Super dad. Super autism dad. Super occasional bad-ass autism warrior. And I super love him for being all of those things for us every single day.

 

JESS

(AKA: Mom/Autism Mom/Occasional Bad-ass Autism Warrior)

A few days ago I noticed that my three year old son needed warm weather pajamas. We constantly disprove the notion that having two children the same gender eliminates the need to buy additional clothing.

I ventured to the store in pursuit of pajamas. As I shopped my thoughts drifted to my oldest son and how much he would love the pajamas with the individual PJ Mask Characters. My oldest likes to pretend he is Catboy and my youngest son likes to be Gekko.  Unfortunately, these particular pajamas only came as a short sleeve shirt and short set. And my oldest son would not wear shorts.

That may sound odd to you. Why in the world would my son not wear shorts? The simple truth is that I have absolutely no clue. It is one of the many things that I do not understand as we navigate the autism spectrum.

Transitions are hard. And this year the transition from spring to summer was filled with new and unexpected challenges. My son needs pants. And his needs are very different from the needs that you and I have. His needs come from a place deep inside of him. A place he has very little control over. A place that is in complete control of him.

His need for pants is very real. For my son pants are so much more than just something he wears. Pants are security. Pants are protection. Pants are a literal shield of armor from the sensory elements of our world.

At the mention of shorts his body exudes a physical reaction: shaking, retreating, curling into a ball. He shouts and cries out in desperation. He pleads for us to understand that shorts are scary. His fear is very real. I see it with my eyes. (And I feel it in my heart.)

It does not matter to me if my son wears pants or shorts. My three year old son spends most of his time walking around our house naked or in a variety of Disney princess dresses. So there is zero judgment about what my children wear. In the lifelong parental game of “choose your battles” we were content to let this one go.

And then something happened.  He started to get sick from the heat of the day. Headaches and stomachaches at the end of warm days spent in pants. Aggressive and violent behaviors as a result of over-heating.

We intervened. Not because we wanted to. We intervened because as parents it is our job to protect him; even when that means doing something hard or unpleasant.

We ran an intensive program of extinction, redirection, praise, reward and consequence with our ABA therapy team. It was not fast. It was not easy. It was not without tears. It was not void of hitting and kicking and screaming. It was hard and exhausting and emotionally draining.

But in the end, my little man wore shorts.

In the evening the day after he first wore shorts I selected pajamas for both boys and began dressing them for bed. My oldest son saw the PJ Mask pajamas and his face lit up with a huge smile. Crap.

I explained to him that these 3T pajamas were for his brother. And,  now that he wore shorts I would buy him some too. We made a plan. (We make a lot of plans.) Monday after a twelve hour day at work I returned to the store. I went to the “little little boy” section and located the pajamas. I scrolled through 2T, 3T, 4T. Crap.

I raced over to the “big little boy” section. Crap!!!!!

In that moment I wanted to sit down on the floor in the middle of the store and sob.

The Catboy pajamas represented so much more than a “gift” for my son. They were a reward. A symbol of an obstacle overcome. A celebration of forward movement. The culmination of something that was physically and emotionally trying for all of us.

These silly Catboy pajamas were a proverbial “light” in the middle of the tunnel; because on our journey, the tunnel has no end.

I chose different 6T pajamas. Pajamas that he would surely love. But no amount of love would replace the Catboy pajamas and all that they represented. Not now. Not after 24 hours of expectation and anticipation. Not while he stood watch waiting for me to return home with his new Catboy pajamas.

I walked back to the “little little boy” section. I paused for a moment. Then I reached to the back for a pair of 4T Catboy pajamas.

Yes, they would be way too small. Yes, his boxer brief underwear would hang out the bottom of the shorts. Yes, the shirt would reveal two inches of his belly. Yes, it was completely ridiculous to buy 4T pajamas for a child wearing size 6T. But going home without those pajamas was just not an option. At least not an option I was willing to consider.

You see, a lot of things in our day to day life are hard. We fight like hell to survive. The symptoms of my son’s autism are very real. He is rigid. His speech is delayed. He struggles to communicate his needs to us. His body is very wiggly. He does not understand physical or emotional boundaries. He runs. He kicks. He throws. He hits.

Autism is hard every single day for a million reasons that we cannot control. But there in that moment, control was mine for the taking.

I knew my son could care less about two inches of his belly showing. And, I knew that going home without the pajamas would cause a chain reaction. It would bring the hardest pieces of my son’s autism to the surface.

So I bought pajamas that were two sizes too small. And I did it with a smile on my face.

I walked in the door and my son instantly narrowed his eyes on me and asked “what did you buy?” It was a quiz. I was being tested. And I am so very happy to say…I passed!

Life is hard and messy and way more complicated than it needs to be. It is ok to take the easy win sometimes. Even if it is not perfect.

JS

Hey there munchkins –

Tomorrow is your last day of 4K! It seems like only yesterday that I stood outside of the door waving and fighting back tears as you crossed the threshold into your new classroom. The beginning of your grade school journey.

I stood there for a long time. I knew that eventually I needed to walk away. But I needed that moment. I needed to know that my son Grayson was in good hands. I needed to watch as you all entered your new world together.

It was hard for me to give Grayson to you. Selfishly I wanted to keep him all to myself. But the world deserved a dose of my sweet and wonderful little man. And so I gave him to you. I shared him with each of you.

I was scared, but I was still so full of hope. Hope for all of the things that you would teach him. And all of the things that he would teach you.

I wrote you a letter then and I asked you for a big favor. I asked you to keep Grayson safe. To show him kindness. I asked you show the world the power of love and tolerance. I asked you to accept differences that you did not even understand.

I told you about Autism. I told you about the way that autism makes Grayson wiggle. I warned you that sometimes autism is really loud. And sometimes it is hard to understand why Grayson is doing the things he does or saying the things he says. Autism is confusing. (Oh boy do I understand that!)

But I needed you to know about Grayson’s autism. About his wiggles and his noises. Because I needed you to help Grayson to be the best Grayson he can be. And I knew that if you could let him in that he would help you to be the best that you can be too.

And all year I have been watching. I watched the morning line-up. I participated in classroom activities. I attended school programs and after school events. I watched. And, I saw.

I saw you do something amazing. I saw you embrace my wiggly son. I saw you learn to love him.

I saw the way you invited him to join in on activities. I saw the way you did not hold a grudge after a particularly tough day. I saw you learn to carefully step back when Grayson wiggled near you. I saw you politely remind him to find his spot in line. I saw you calmly find an adult when you needed help. I saw you make silly and kind faces when you could not understand his words. I saw you excitedly crowd around him when he presented something to the class.

I saw a lot of things. Things that filled my heart with joy. Things that calmed my fears. Things that gave me hope for this world. For kindness. For love. For acceptance. For difference.

Every moment was not perfect. Sometimes he wiggled right up in your face. Sometimes he knocked down your tower and crashed your trains. Sometimes he lost control of his body around you. Sometimes he yelled. Sometimes he hid away in his box. Sometimes he wanted so badly to play with you and could not find the words to tell you. Sometimes he ran. Sometimes he went into the girl’s bathroom instead of the boys. Sometimes he disrupted the class.

And I think it is ok for things not to be perfect. Grayson has autism, and autism is not perfect.

You might think that I am silly, but I meant it when I asked you to help me change the world. Because sometimes this world needs a little changing. And I just knew that you could help me. I looked at your bright, smiling faces and I saw such a beautiful world reflected in each of you.

So before the final bell rings and you race off into summer break; I have just one more favor to ask you. Remember my son Grayson.

Remember the way that he wiggles. Remember the way he struggles to talk to you. Remember that sometimes he does things that you do not understand. Remember that he is different. Those are important pieces of Grayson and I want you to remember them.

But also remember the fun. Remember his beaming smile. Remember his joyful giggle. Remember the passion and energy he brings into the classroom.

Remember that different is good. Different is fun. Different is important. And if we all remember that; then we really might just change the world.

Have an amazing summer kiddos. Catch you in Kindergarten!

Grayson’s Mommy