Last night I took my two-year-old son Rowan to his orientation for our beloved Lake Geneva Montessori School. It seems unbelievable to me that my “baby” will be going to school next year. Rowan is only two, but let me tell you what, he is one of the smartest, boldest, comfortable in his own skin two-year-olds that I have ever met.

If you have read my earlier posts you know that I often say this about Rowan; he is living proof that God knows exactly what you need. And as I accompanied him to orientation last night I remembered just how true this is. You see, this orientation was drastically different than the very same orientation for Grayson just two years ago. I can remember going to that orientation filled with nervousness. For starters, Grayson was our first child and in such the first child to begin any type of schooling. And, at that point we were pre-autism diagnosis, but post knowing that something was going on with our little man. I remember attending the orientation alone. They encouraged us to bring our children if it worked for our schedules, but I wanted a little one-on-one time with the teachers to make sure I had my head on straight. During the orientation they give you folder with a number of different forms. But I remember one form very clearly, the “Personal Development Form”. This form is more or less a “get-to-know-me” form for two-year-olds. This was just one single sheet of paper, but I kid you not I must have written in the smallest font possible on every single inch of that piece of paper. I wanted them to know anything and everything that I knew about my son. We had symptoms and tendencies and behaviors, but we were working without a diagnosis or a treatment plan. So I poured as much as I could fit onto that piece of paper. And then like most parents, I hoped for the best.

Last night Rowan came with me to his orientation. He proudly said “it’s my turn.” There are very few moments in Rowan’s life that are just about him. He is often looked to for way more understanding and reasoning than any two-year-old should need to possess. So, during our drive to orientation I made a point to talk to him about it being his turn to go to this school and that Grayson would go to a different school now. It clicked with him right away. As we walked through the gates to the school he said “It’s Rowan’s turn to go to school.” And then he dashed over to the outdoor toys and began to play. Once I talked him into moving inside he bounded up the stairs (a path and routine he knows well). He grew a slight bit sheepish as we walked into his classroom, but he quickly found his spunk and began guiding the teachers all around the room in exploration. As I sat at the table with one of the teachers I joked about how Rowan’s “Personal Development Form” could contain two simple and to the point words…”second child”. In his two and half years on this world Rowan has become the most compassionate and kind-hearted human being. Sure, he is still two. So he can throw raging fits with the best of them. But at his core he is nurturing and understanding and flexible. He understands things that some adults cannot understand. At the end of our twenty minute orientation we walked down the stairs and Rowan said “bye Rowan’s turn.” He was ready to go home, but he was so happy for the twenty minutes that were all about him.

Sometimes people describe me as a “yes, and…” kind of person. If you are not familiar with this concept, in a nutshell it means that once something is proposed you dive straight in headfirst and begin working on that idea. For example, someone can text me an idea for a charity event, and within minutes I have put together the full table scape and idea board. At work someone may suggest a new avenue for sourcing candidates, and by noon I will have put it all into a pivot table to determine the best execution strategy. I never shy away from an idea or an adventure or the opportunity to help someone in need. Of all of the things that I have passed down to my children; this is the trait I am proudest to see in Rowan (his passion for twirling skirts and sequined headbands is a very close second). Rowan is a “yes, and…” child all of the way. Rowan can be 100% committed to a TV show and if his brother comes in the room and requests a change, Rowan not only agrees to the change, but then he convinces you that it was the show he really wanted to be watching all along. Sometimes Rowan is even told which color can be his favorite color. Or which animal can be his favorite animal. And he takes it in stride every single moment of every single day.

You see, in a world full of second guessing and judging and bullying, I am so incredibly proud to be raising my “yes, and…” son. Towards the end of our orientation last night one of Rowan’s teachers commented that both Rowan and Grayson are so lucky to have each other. I could not agree more. Grayson, in his own Grayson way, is teaching Rowan about tolerance. He is showing Rowan, every single day, that some people need different things from you. And Rowan, in the most Rowan of ways, is teaching everyone around him how to be more tolerant. Every time he allows the show to be changed. Every time he brushes off a hit or a push. Every time Grayson gets the last donut with Green sprinkles on it. Every single day. Rowan rises above challenges and overcomes roadblocks every single day. And as a mom, it would be easy to let this break my heart. It would be effortless to let myself be overcome with sadness for not being able to protect Rowan. But the reality is that Rowan does not need protection because he is learning to protect himself. And he is learning to protect the people around him. Rowan looks at his brother every single day and says “yes, and…”.

Parents, I have never claimed to know it all. But this I know…tolerance is taught. Our children have the most amazing capacity to love unconditionally. To accept difference. To embrace all of the wonderful unique people in this world. As you prepare to send your children off to school this fall, remember that back-to-school is more than shopping for school supplies and sparkly new shoes. Remind your children to be good people. Remind them to be kind. Remind them to feel blessed for the life that they have. Remind them to embrace difference. To learn from it. Remind them that what they see from 8am-3pm is only a very small part of someone’s life. In that small amount of time, encourage them to make a positive difference. Encourage your children, every single day, to see the difference in the world and say “yes, and…”

JS

I’ve thought a lot over the last day about whether or not I would write about what we are going through. And in the end I reminded myself that I committed to providing our authentic truth. Maybe because I feel like I owe it to you. Maybe because saying it to you heals me in some way. Maybe because over the last few months I have learned that more often than not there is someone else going through the same thing, and they need to know they are not alone. For all of those reasons, and so many more, here is another piece of our story.

When I started writing this blog so many of the posts were full of hope and positivity and optimism. At that time we were in an amazing groove with Grayson’s treatment. He was engaging with his peers. He was taking positive strides towards independence (potty training, communication, etc.) We were balancing the mix of therapy and family time. We had a consistent and wonderful treatment team. All things considered, we were counting our many blessings. But in our life things can change quickly. And often without notice.

Around the beginning of July Grayson began to show signs of” sliding”; his progress seemed to regress. His extincted behaviors were returning. Yes, all of them. He was hitting, screaming, slamming doors and biting. The dynamic between Rowan and Grayson became more irritable than usual. In general, everyone was having a difficult time understanding and navigating Grayson’s emotions and behaviors. So we went into survival mode. Which is a mode we’ve come to know well. We know that when we are in survival mode that everyone is just doing their best to make it though the day. We remind ourselves to be more forgiving of ourselves and each other’s moments of imperfection. We try to learn from our mistakes. We try anything. Everything. We pray for the end. We pray there is an end. Sometimes these stints are short lived. This one is not.

About 3 weeks ago Grayson’s sleep pattern started to change significantly. He went from regularly sleeping 10+ hours a night to sometimes sleeping as few as 5 hours. He was fighting bedtime from 8pm to as late as 11pm. Then waking up for the day at 2:30am or 4am. And then the exhaustion set in and it only perpetuated the behaviors. We kept thinking “tonight he is just going to crash, I mean, how can he not?” And then we’d find ourselves awake with him again in the middle of the night. The exhaustion and the behaviors takes a toll on all of us. No one is the best version of them self under these conditions.

So in a moment of complete desperation (after a 2:30am wake up call that morning) I reached out to our (AMAZING) pediatrician. She confirmed my belief that this minimal amount of sleep was not ok. And she gave us the green light to try Melatonin. We were anxious as bedtime approached. We gave him his first dose in his milk. And he was honestly so tired that he could not even brush his teeth. He fell asleep by 8:02pm that night and slept until 7am. DEAR HEAVENLY LORD  ABOVE!! He slept. We slept. I woke up feeling on top of the world. The next day his behaviors were minimal. Could this magical all-natural product have been the solution? We were hopeful when nights 2 and 3 went the same way. Night 4 was way less awesome.

He woke up at 2:30am but after 90 minutes he did go back to sleep. The next morning we could tell immediately that something was off. So much so that I knew I needed to work from home so that I could give him the focus he needed. It was a reminder that there is no such thing as a “quick fix” for autism.  He struggled through his first hour of therapy. During his first break we played on computer, I typed words in giant green letters and he recited his sight words. He struggled again in the second hour of therapy. He came up for his second break and wanted to continue the computer. I looked down at my computer to find the word document and make it big and with no warning, no signs of anger or distress or sadness, Grayson drew his leg back and kicked me in the face. I instantly knew that I had to minimize my reaction. I stood and ran to the bathroom where I sobbed as quietly as possible into a towel, my face bulging in pain. Grayson could hear me. He started laughing and said “mommy’s crying”. And some how that moment was worse than anything that happened before that moment. Because in that moment I understood just how little Grayson was able to process the emotions of others and the way in which he is able to impact them.

Look, I’m not fragile. I’ve been hit and pushed. I’ve had things thrown at me. I’ve been bitten. I understand that it is the autism. And I know that absolutely no good comes out of me losing my cool. But I also know that I have to create a space for myself to emotionally process the things that are happening to me. Physically. And, emotionally. My face will heal. A few Tylenol and an extra coat of makeup and physically it’s a distant memory. But my heart will remember it a bit longer.

This story is in no way intended for you to look at Grayson or any children with autism any differently. This has always been a part of Grayson, you just maybe didn’t know it until now. My intention is simple; it is to remind your about the power of unconditional love. Because not even for one single second yesterday was I mad at Grayson. I was mad at myself for not better reading him emotions when he came upstairs. I was mad at my Dell computer for not saving faster so that I could open his document. I was mad that I’d so naively believed Melatonin could solve all of our problems (although, it is definitely helping.  I was mad. But I was not mad at him. And that part takes work. It takes commitment and effort. And it takes a strong group of love and support around you. Whether you are the mom or dad or someone near by just wanting to help; unconditional love. It is stronger than any hit or kick I have encountered; and stronger than any that I will encounter in the future. He is my son. And I love him.  Unconditionally.

JS

I have realized in the last several weeks just how powerful words can be. It is ironic really. Because for the first 36 months of Grayson’s life his words were so limited. He found ways to fill the spaces where words belonged. He used gestures and screams and emotional expressions to communicate what he could not say with words. And because we wanted to communicate with our son we learned to understand what those things meant. It was Grayson’s language. And because we wanted to, and because we had to, we learned to speak it too. And then this crazy thing happened. One day he just started speaking. And believe me this was not a spontaneous out-of-nowhere occurrence. This took hours upon hours of therapy. This took structured and unstructured peer interactions. It took focus and dedication and patience. And slowly one word at a time Grayson began to speak to us. And it became clear to us almost immediately that he had a lot to say.

As we have watched Grayson progress through speech therapy in our home and in the classroom over the last year we have been blown away. The progress is truly remarkable. And in so many moments we cannot help but stand back and look at him in awe. When we look at where we started and where we are today the difference is just unbelievable. I cannot tell you how many times I have given him too many suckers or an extra 3 cookies just simply because the way he asked for them was so perfectly wonderful that I could not bring myself to say no. Today there are often times that he will say something and we look at him with a stunned expression. It is still difficult to process that our little man is communicating with us in full understandable sentences. Difficult and really super freaking awesome.

And now Grayson is learning that there are so many ways to use words. He understands now that communication is a part of life. And he is figuring out how to use words in his life. Words can get you treats, words can get you into trouble, words can hurt people, words can fix people…words became powerful pretty quickly in our home. And while Grayson was picking up on all of his new words his little brother was right there beside him; learning to speak and advancing his own communication skills. And all at once James and I found ourselves surrounded by two fully communicating little people with a whole lot to say.

I would be lying if I said that over the past month James and I have not marveled at the irony of the moments that we begged and pleased for Grayson to speak. . And now here he is speaking in all of his sassy, smarty pants glory. No matter how many sassy comments he makes and no matter how many times I have to listen to him try to put me in my place; none of that will matter this school year when Grayson can come home from school and tell me about his day. You see, as full-time working parents this has been one of the most difficult parts of our journey. We come home after a full day away and we could not have even the most basic conversations with Grayson about his day. We relied solely on notebooks with his teachers and therapists and nannies. And even though it was always wonderful to have those notes; it was never quite the same as hearing a story through Grayson’s eyes.

And now, his stories still do not contain a lot of detail, but he can give us the basic pieces of the day and he can remember and describe the things that he did. Grayson has a habit of getting so excited about certain things that he brings his voice down to a whisper when he talks about it. As if it is something so special and so wonderful that he just has to keep a lid on it so that it doesn’t escape. And in the moments when he is frustrated he is slowly finding words to help us understand how to help him. Sometimes we feel like we are playing Catch Phrase. Grayson says the words that he knows and we try feverishly to figure out what he needs. When Grayson tells you to “try again” he means that he wants you to start over at the very beginning. When Grayson says the he wants a “garden” he means that he wants his toys spread out all over the floor. The trick is to figure out what he is describing before he has an emotional reaction to your inability to understand him. Yes, Catch Phrase is the perfect comparison. You know that moment when you are holding that disk that is beeping? And with each second the beeping gets louder and faster. And the louder and faster is gets, the harder it is for you to focus. And then before you know it BEEEEEEEEEEP! Shit.

Any honest parent will tell you that words and communication are a game changer for negotiating with a toddler (something I do not recommend…because even when you win, you lose). But communication takes this whole concept to a whole new level. Because now when Grayson asks for a cookie I can tell him that he has to take 5 more bites. Now when he tries to throw rocks into the water I can say that the rules at the restaurant are no throwing rocks. (Side note: any other parents out there who play the “taking advantage of a kid who can’t read” card? I cannot tell you how many times a day I point to a sign and tell Grayson that there is some bogus rule writing on the sign. Sorry Gray, the sign says no climbing. Sorry Gray, the sign said no kids allowed inside. Sorry Gray, the sign says be nice to your brother. Sorry Gray, the sign says the zoo is closing and everyone is going home for a nap. Prime evil or genius parenting….I say the ladder.)

Any who, back to words. They have completely transformed our world. Something so simple. Something that so many people take advantage of every single day. The ability to communicate. To be heard. To have a voice. I never imagined a world in which my child could not communicate his most basic needs to me. And yet for the better part of 4 years this was our reality. Even today, when Grayson is too worked up to use his words or too full of anger to calm down enough to talk, I often say in exasperation “Grayson, please tell mommy what you need.” Because that is what being a mommy is. Understanding what your kids need and walking through fire to get it for them. Now, 97% of the time Grayson “needs” a sucker. Or a cookie. Or PJ Mask. But that 3% of the time when he really truly good and needs something…I am so beyond thrilled that he can tell me about it. What I have learned in the last few months talking to my amazing son Grayson is that he is so much more wonderful and amazing than I had even imagined. And I cannot wait to hear about all of the amazing stories and adventures that life with surely bring his way.

JS

People always want to know what has been the hardest part about Gray’s ASD diagnosis. This is a tough question to answer. Because so many things are hard. And so many things push us outside of our comfort zone. So many things still catch us off-guard, even 15 months after diagnosis. I understand that many people reading have not had a firsthand glimpse into day-to-day life with ASD. And I genuinely appreciate your desire and willingness to listen. And learn. And understand. Not because I need everyone to know that my life is hard. Not because I want sympathy. Or attention. Or praise. Not because I need anyone to swoop in and rescue me. Not because of any of those reasons. I only have one purpose here, to deliver our truth. And maybe, just maybe, our truth resonates with someone else. It gives someone else living “on the spectrum” or living through any number of other challenging obstacles the comfort of knowing that somewhere out there someone else gets it…life is hard. Harder than it should be. Harder than I thought it would be.

You see, when we began this journey I was filled with energy and fire to fight this battle alongside my son. And then along the way things happen that try to extinguish that flame. At so many moments on so many different days we see things and feel things and experience things that distract us from the fire and energy that we want so badly to hold on to. In some moments we are completely filled with hope. And in other moments we are hopeless. In some moments we have the energy and strength to fight through whatever it takes. And in other moments we cannot fight. In some moments we are SUPER parents. And in other moments we are just parents. And in all of these moments, and all of the moments in between, we do our best to push ahead.

Because you asked (well, maybe not you specifically, but a lot of the “proverbial you’s” out there)…here is my answer.

Autism is hard. Like really really really hard. And there are so many reasons. Here are a few.

• Autism is incredibly unpredictable. We never know how quickly things will change. Sometimes it takes us 2-3 months to get into a good routine with therapy and family and balance. And sometimes after spending 2-3 months getting there, it only lasts a week or two. And then we are starting all over again.
• Autism brings out a lot of second guessing. We worry every single day that we are making the wrong choices. That we are responding the wrong way. That we are making things worse instead of better. That we should be doing more. Better. Faster. We second guess ourselves and we second guess each other. We second guess our team. We second guess the decisions we make. The places we go. It is a vicious cycle. It is a cycle that in un-ending.
• Autism can look pretty ugly sometimes. There is a rawness to the aggression that someone on the spectrum displays. I am not quite sure how to explain this. To be honest, I have seen it so many times that on some level to protect my brain and my heart I have actually gone a bit numb to it. Watching the emotions and the confusion inside of your child boil up, seeing him lose control of his body…is too much. Seeing the look on his face in the moment after he hits you, or his brother or his friend is gut-wrenching. Watching him feel immediately remorseful and knowing that all of the remorse and all of his “I’m sorry’s” will not change the fact that he will do it again. Maybe an hour from now. Maybe a week from now. Maybe a month from now.
• Autism causes communication challenges. Not understanding Grayson’s needs has always been one of the hardest things for us. Because as a parent you believe that you should have an innate ability to understand and predict your child’s needs.
• Autism does not exist in a vacuum. The symptoms of autism on their own in our house surrounded by only “our people” is hard. Putting it out there in there real world with real experiences is incredibly challenging.
• Autism infiltrates a family. I have said this here before…Grayson has Autism, but our whole family is on this journey with him. My wonderfully strong 2 year old son deals with autism every single day. When he is asked to “trade” with his brother. When he is removed from a room so that his brother cannot hit him. When his brother cannot answer his questions because his communication skills are already more advanced.
• Autism looks different everywhere you look. Since starting this blog I have heard from so many amazing strong parents who are on this journey. Mothers up at 2am ironing the sheets so that their child with sensory issues can go back to sleep. Mothers who have to go into a room before their son and ask everyone to put their phones on silence. Fathers who have had black eyes. Parents reacting and accommodating and adapting at the drop of a dime. Parents with so much love for their child that they just might actually walk through fire.

Autism is hard. That is just the reality of it. And sometimes I get lost in that reality. In that feeling that it may never truly get better. Or easier. Or maybe even just a little less hard. Somewhere along the way I accepted that the lows needed to feel low and terrible and awful, because that way the high feel SO MUCH BETTER. So when things are low I do a few things. (1) I let myself live in that low for just a little bit. Why? Because I need to feel it. All of it. I need to remember what it felt like to miss step and go off course. I need to remember what it felt like to lose my cool. I need to remember what it felt like to get it wrong. Because next time…I will get it right. I will do better. I will stay course. (2) I make a plan. Because I am me. And that is what I do. (3) I move forward.

Yes, autism is hard. And sometimes I let my mind drift to how different our life might be without autism in it. And then I snap the heck out of that really quickly and remind myself to be thankful for the things I can control. I am not ready to put a pretty bow on autism and call it a “gift”. But with every day that passes I can see more and more how people who have been on this journey much longer than me may call it that. And maybe one day I will be there. And maybe not. But I guess only time will tell.

JS

Extinction is without a doubt the most annoyingly effective tool for parents of toddlers. Maybe even more so for parents of toddlers with Autism Spectrum Disorder. The entire idea behind extinction is to do nothing. Do not acknowledge the behavior. Do not respond to the behavior. Pretend as if the behavior is not happening at all. And then, if you are lucky, over time the behavior becomes extincted. I call this method annoyingly effective because that is exactly what it is. Have you ever tried to completely ignore something that is driving you completely mad? A flickering light bulb. A buzzy sound coming from an appliance. These thing are all annoying. These things all aggravating. And when these things happen near us we cannot help but get involved. We replace the lightbulb or bang on the appliance. We take action to fix the problem. But mostly we take action so that we can alleviate the annoyance.

In our house extinction has been the answer to a number of Grayson’s behaviors. Before we started working with our Mercy Options team we had no clue about extinction. So we would beat ourselves blue in the face trying to redirect Grayson and politely discuss changing his behaviors. We would try, and fail, to introduce rewards and punishments in hopes of diminishing the behaviors. Nothing worked. When we started our MOAP treatment we were going on month 18 of high pitched screaming. Yes, that’s right I said 18 months. Every day for 18 months Grayson communicated to us in high pitched screams. Happy screams. Sad screams. Scared screams. Anxious scream. Curious screams. We lived in a constant state of neck ache from the way our shoulders thrust upward each times his scream caught us off guard. Looking back at it today feels a bit like looking back to childbirth…it is hard to remember it really being “that bad”. But if I am being completely honest; it was absolutely terrible. It was such a stressful way to live. We knew that everyone around us was sympathetic. But we also knew that the screaming was getting to them. How could it not? We started distancing ourselves from public places because we just could not handle the “can you please control your child” glare that we got. And for the better part of the screaming timeframe we did not have a diagnosis. So we did not understand why it was happening. In our dark moments we felt the same way as those judgmental strangers; how in the world were we completing incapable of taking control of this situation. And then we started with Mercy and we started learning about the way Grayson’s brain works. We realized that most of what we had been trying would just perpetuate the screaming. We took a crash course in extinction and set out on a mission.

Now, anyone who has ever done this can tell you that it is really really really really hard. Walking around your home and carrying out your daily duties while completely ignoring the screaming 3 year old at your heels should be an Olympic sport. And all it takes is one weak moment, one simple slip, and all of our efforts come undone. One simple “Grayson stop screaming” is all it takes to derail our extinction plan. And then we are back at the beginning. Starting the extinction over again. But when we can stay focused and see it through, it makes us feel incredibly strong. Grayson responds to the extinction method the way that many kids on the spectrum respond. He has what is known as an “extinction burst”. In simple terms that means that he has one final grand finale of the behavior just before extinction. It is almost like his final effort to see if he can break us. And believe me, sometimes he does.

Screaming was not the only behavior we extincted. After screaming came hitting. Some people on our team believed that he just replaced the screaming with hitting. Something that is important to understand is that autism therapy is about behavior change. Autism is a lifetime diagnosis and today there is no known cure. So behavior change therapy helps to adapt symptoms into more manageable and socially appropriate behaviors. And to do this you have to understand the antecedent (the thing just before) the behavior. In fact our team spends a lot of time tracking this kind of data. What happens in the moment just before the behavior? It is a look? A gesture? Because understanding the antecedent may help us to understand the reason for the behavior. We know for sure that Grayson’s behaviors are emotional and physical. We know that they are a part of the way that his brain processes things. In those moments he “needs” the behavior.

Hitting was difficult to extinct for a lot of reasons. The most important reason being Rowan. We had to draw the line between extinction and just letting our one year old get wailed on. Another reason was that Grayson was in a classroom environment 2 days a weeks and we had a responsibly to the other children in the classroom. So hitting took a combination of things. We extincted at home when he hit James or I. And in fact we still do that today when the behavior randomly reappears. It is incredibly difficult not to react when you get slammed in the face 5 times in a row. But, the best way to make sure it does not happen again is to extinct it. Do not give it any energy. At school and with Rowan we used redirection and punishments. We always tried first to verbally redirect Grayson towards anything other than hitting. If that did not work he would go into a time out.

Other behaviors we have instincted include door slamming, biting, running away from therapy, and picking things up to slam them down. Each time we encounter a behavior we go into our methodical extinction mode. We have learned to tune the things out that drive us crazy. We have learned to say nothing when we want to scream out loud. We have learned to look left when he is completely losing it to our right. We have learned to pick Rowan up and remove him from the room when the behaviors start. We have learned to extinct. Because we had to. And there are still a lot of days that we are really bad at it. There are days when we are not as strong as we need to be. There are days when the behaviors get the best of us. When we take a step back instead of forward. And we have learned that slipping like this is what makes us human.

Just remember that things are not always what they might seem. Remember to be nice and give people in public the benefit of the doubt. It may look like I am being a “bad mom”. Like I am ignoring my child or letting him get away with bad behaviors. But in my world that strategy is a part of my son’s autism treatment plan. I am not a bad mom. In fact, I am an incredibly headstrong and patient mom. Because any less of a mom could not follow through on extinction. It is hard and unpleasant and sometimes it beats us down and makes us feel like complete failures. But it is also working! And in our house we have learned that sometimes short term pain is worth the long-term gain. One day at a time.

JS

It is sometimes difficult for people to understand just how much of a constant our son’s Autism Spectrum Disorder is in our life. ASD affects us every single day. Most days multiple times a day. It is ever-present. Ever-changing. It is a hurdle we must fight again in order to keep moving forward. Managing all of the extra pieces of our life that come with an ASD diagnosis feels like a full-time job. It is a commitment every single day to carve out time to focus on the Grayson’s goals. Grayson’s team. The care plan, the disciplinary measures, the rewards, the therapy space, the therapy tools. We spend time trying to understand his needs. And then mapping out a treatment that meets his needs and the needs of our family of four. We balance therapy time and family time. Often times comprising family time so that Grayson can achieve the mandated 25 hours per week. Somewhere along the way I learned to turn the “mom” role off when it comes to Grayson’s therapy schedule. It will never feel natural to schedule my son in nearly 30 hours of therapy a week. It is something that I second guess every single day. But my head knows that intensive ABA therapy is Grayson’s best shot at living a full and happy life by learning to control and process his symptoms of autism. So when it comes to Grayson’s treatments I take on many roles: scheduler, decision maker, line in the sand drawer and sometimes bad ass momma on a mission…do not mess with my kid! I take on all of those roles so many times a day that I forget sometimes that my true, and most important, job will always be as Grayson’s mom. And some day, hopefully not too far in the future, I will look back at this time with pride. Because we are doing this. One day at a time. One schedule at a time. One small fortune spent on new tools and techniques at a time. We are kicking autisms ass. And believe me, there are a lot of days when it beat us down. There are a lot matches that autism wins. But we know that we will be victorious in the end. Because that is the commitment we have made. We will not stop until Grayson’s life is full and wonderful and amazing.

And so sometimes we get by on very little sleep. Sometimes we sacrifice our personal relationships. Sometimes the piles build up around the house. Sometimes at 9pm when the kids are in bed and we have not yet eaten dinner we are downstairs building a new tool for therapy. Sometimes on the weekend we are making schedules and arranging the house for a new week of therapy. And sometimes we feel guilty about all of the things in our life that we neglect. I cannot tell you how many times I start a conversation with a friend by saying “I’m sorry I’ve been so busy…you know.” And they do understand. That is the amazing thing about great friends. So they give me allowances for letting too much time pass. They continue to invite us places even though they are 99% sure the answer will be no. They understand the time commitment we are making. They understand the financial commitment we are making. They understand that our commitment to Grayson and his treatment will always come first. And they show us grace and understanding when we put it first.

I am incredibly fortunate to work for a company that allows a lot of flexibility with my schedule. I can use my lunch to attend a 9am treatment review at the hospital. And I can work remotely on the days that we have team meetings in our house. I can answer my phone when the care provider I’ve been waiting to hear from all day calls me back.  I can text with my nanny and offer solutions if there is a particularly difficult exchange at home. I am also incredibly fortunate that James and I have the financial support and means to navigate Grayson’s diagnosis. I do not talk dollars and cents here a lot, but holy heck! Autism treatment is freaking expensive! Our care through Mercy options is covered through our insurance. So we are only responsible of paying a portion; which is still an incredibly high number. In the beginning of treatment I calculated that 3 months of treatment without any insurance coverage at all would be $30,000 out of pocket. And that number has increased since adding a Speech Therapist to our team. After the cost of the treatment we have the additional costs of resources for Grayson’s therapy space. Games, tools, electronics, snacks, office supplies, etc. And at Grayson’s age his needs and skill levels are increasing almost daily. So we are continuously adding things to our home. Staying in tuned with Grayson’s need and balancing the needs of treatment with the needs of the family.

Yes, we are ever present. Ever changing. Ever pushing forward. Because going all-in was the only option we gave ourselves. Because we refuse to accept anything other than the absolute best for Grayson. Because I will have a lot of jobs in my life, but none will ever be as important as being a mom. That is a job that I do every day. 365 days per year. And that job came with a few twists and turns that I did not expect. But I am still committed to it every day, probably even more so than I would have been otherwise. I hear people say that autism is a “buzz word” these days. In my life autism is not a buzz word, it is a reality. A harsh, sometimes cruel and expensive reality. Someone one said that the “distance between your dreams and reality is called action.” My dream is for both of my children to live truly wonderful lives full of love and support and adventure. I see my reality, our everyday life. The Austism Diagnosis. The way we navigate ASD and all of the other little hiccups life throws our way. And I respond by taking action. I gather the pieces and put them back together. I rise up. I do better. Every single day. 365 days a year.

JS

I learned a long time ago that autism and expectations do not mix. They cannot mix. Because every single day on the spectrum is different. We learn to accept that the things that go perfectly one day can be a complete disaster the next day. Things can change without notice. Without reason. At least, without a reason that I can see or understand. We have learned that expectations set us up for failure. Sometimes we expect something to be great and we are overcome with disappointment when it goes poorly. Other times things that we expect to be terrible turn out great and we feel disappointed in ourselves for being negative and not having more faith. You see expectations require the ability to predict; and that is just not something parents of ASD can do.

This part is hard for people outside of our everyday reality to understand. I cannot tell you how many times I have been asked “how do you think Grayson will do at (blank)?” Or “what time do you think Grayson will want to (blank)?” Or “where do you think is the best place for Grayson to (blank)?  The answer is simple, I have no clue! I have no idea how he will act. I cannot predict all of the stimulants or environmental factors that may derail him. I cannot guess if he will like something or not. Yes, even when he has done the specific activity or gone to the specific place before. Every single moment of every single day depends on a million big and little factors. We can usually tell within 5 seconds of Grayson waking up what kind of mood he is in. If he comes straight to our bed and climbs in; it is going to be a good day. If he goes into the toy room and hides out; it is going to be a sad day. If he goes into the living room and sits on the couch; it is going to be a wiggly day. If he sleeps in and we have to wake him up; TAKE COVER! When we venture out of the house I do not know if he will be rigid or easy breezy. I do not know if my gentle cues will make the situation better or worse. I cannot control the environment, the people in it, or his reaction to it. I am powerless that way. And feeling powerless, in any way, as a parent is a terrible feeling. So, all I can do is be honest. I do not know. And if you need me to know, then it is probably a better idea that you do not include us. It sounds harsh, but that is our truth.  We live our life one moment at a time. Preparing for anything, expecting nothing.

I can remember the first time I realized that being a parent to a child with ASD meant that I was going to have to let go of my need to control everything. It was just a few months after diagnosis and we were preparing to go to a 4^th of July party last year. I excitedly dressed Grayson and Rowan in their adorable red, white and blue outfits. We headed out the door with expectations for a fun afternoon of bouncy rides and sno-cones and carnival games. We arrived at the party early. By this time we already realized that we needed a little bit of “settling in” time. As we walked up to the party Grayson’s eyes grew as he took in the site of all of the exciting things. He took off running and in an instant he was bounding up the stairs of the bouncy house to go down the slide.  I do not remember exactly how long we were at the party; it was less than an thirty minutes. I do not remember exactly all of the details that lead to our exit. But I do remember that I left that party with tears rolling down my face; holding my thrashing three-year old against my chest and bolting for the parking lot. I remember that I after we got home I went into my bedroom for longer than I care to admit to and cried. Sobbed. I remember coming out of the bedroom and walking over to Grayson and squeezing him so tight in my embrace. Sorry that I could not protect him from his world. Sorry that I could not be stronger for him. Sorry that I could not fix the world. Fix the people in it. You see, I expected a fabulous afternoon filled with fun and laughter. And sure, I should have foreseen the obstacles. I should have prepared for the stimulants. Maybe I should have expected that Grayson would not understand the rules of the slide. Maybe I should have expected that he would try to climb up the slide instead of the ladder.  Maybe I should have expected that he would collide with a little girl coming down the slide. But, it never would have dawned on me to expect the mother of the little girl to scowl at me and say “you need to control your child before someone gets hurt.” Maybe she was not wrong. Maybe Grayson’s behaviors and reactions to all the stimulants was causing a problem.   And as we walked through the parking lot my head filled with all of the expectations of the day that would not be realized. And in that moment I knew that I had to protect myself from the disappointment of unrealized expectations. And to do that, I had to let go. Let go of control. Let go of expectations.

This year we went to that same party. This time, with no expectations. After last year I protected myself from the expectation that it would go perfectly. And because of all of the work we have done over the past year I simply could not allow myself to expect it to go poorly. So we went in without expectations. The important difference between this year and last year was that I had found a voice for our life. For Grayson’s ASD. If I faced the same ignorant woman I would be ready to respond. I would ask her for compassion. Sure, because Grayson has autism, but mostly because he is 4 and like any mom I am doing the best I can. I may be learning to live without expectations for Gray’s behaviors and his ASD, but there are a few things that I will always expect.

I expect people to be nice and show compassion.

I expect people to embrace Grayson. Show him patience. Teach him.

I expect people to ask questions to my face rather than talk behind my back.

I expect to make mistakes.

I expect people to forgive me for my ungraceful moments.

I expect our life to be wonderful.

This weekend we defied all odds. We went to our first movie and Grayson watched the entire thing beginning to end. Everyone left smiling. We ever to bed 2 hours late 3 nights in a row and everyone stayed happy and upbeat. We saw fireworks twice, some of us from inside where the sounds did not bother our ears. We went to 2 4th of July parties and Grayson listened and waited in lines and left smiling. We pushed ourselves beyond our comfort zone. We are doing the work every single day. And we deserve the chance to test it out in the real world. And wow, what a difference a year makes!  Sure, it may not always be perfect. I may have to step to the side and let the man running the slide know that Gray has ASD and ask him to say “1 minute buddy” instead of “NO” when Grayson tries to climb the slide too soon. I may have to use timers and verbal cues to keep Grayson on track. I may have to pack and extra big bag of tricks “just in case”. This is our normal. This is our life. Our journey.  And even though I did not expect it, and even though I did not predict it, and even though I cannot control it….somehow, it is still filled with a million wonderful moments.

JS

I will warn you in advance that this post may be longer than some of the others. Gray’s education and services are such a huge part of our journey. This is our story…

Yesterday I received a letter announcing Grayson’s school session and teacher along with a school supply list. I’m sure countless other families in the district received a similar letter in the mail. Our letter felt like SO MUCH MORE than a teacher assignment and a supply list. Our letter felt like a prize. A reward for our efforts. The proverbial light at the end of the tunnel. Although in reality I suppose it is more like a flashlight at the beginning of the tunnel. But heck, light is light and I will take it! Because over the past two years we have spent a lot of time in the dark. We have logged a lot of hours listening and asking questions and making plans. Sometimes things felt so much bigger than us; so we just blindly followed where the path led. And this particular path is leading Grayson to mainstream 4K in our home school district!

When we first received Grayson’s diagnosis I looked at everything in way too big of a scope. I looked at my 2 year old and my head skipped ahead to high school and college and marriage. I worried about how the diagnosis would impact his ability to live a full life. I worried until I realized that I had to make my scope much smaller. I had to look at Grayson in the moment. I had to set realistic and attainable goals. Short-term goals. I had to understand what I really wanted for him, and then we had to make the best plan we could to get him there. I threw myself 100% into his care plan. I remember describing this to a friend saying that it felt like the most important recipe that I would ever create. I had to pick just the right amounts of “this” and just the exact amount of “that”. And because it felt so important I labored over the many decisions.

Just 2 short months after the diagnosis we had our first IEP meeting. Grayson was not even 3 years old at the time. And as I sat in that room surrounded by strangers I did my best to take in all of the information and recommendations that they shared. In case you have never been in an IEP meeting before, let me set the scene. There were 6 people around the table in addition to myself and my husband. The 6people consisted of (1) Birth to 3 representative (1) School District Special Ed Coordinator (1) Speech Therapist (1) OT, (2) Classroom Teachers. I listened to these complete strangers tell me exactly where my child should go and exactly what he should do. It was such a surreal out of body experience. At that very first IEP meeting the team recommended that Grayson spend his 3K year in a school in our community focused on providing special education services to students in the district. During the time of the diagnosis my husband and I toured this school. We walked around the school and absorbed the environment. We marveled at the swimming pool, Grayson loves to swim. We explored the sensory room. We met the teachers and interacted with the students. And as we sank into our seats in our car we both let out a big exhale. You see, the school was great. But, we both just had a gut feeling that the school was not the best environment for our son. Not then. Maybe not ever.

Grayson spent his 2 year old year at the Lake Geneva Montessori School. I just cannot say enough amazing things about this school! At the time we enrolled Grayson we did not have a diagnosis. In fact, we did not receive Grayson’s diagnosis until he was 2 months shy of finishing the school year. The school and the teachers embraced Grayson with open minds and pure love in their hearts. We all knew early on that something was different about Grayson. They took the time to schedule extra meetings with me. They filled me in on his progress. They did not hesitate to call and let us know if things just were not “on track” that day. And when they did that we picked him up and knew that we could start fresh the next day. When we went to Iowa for our diagnostic testing we told them that Grayson attended Montessori school. There first reaction was a noticeably surprised “oh really?” They went on to explain to us that children on the spectrum can struggle in a Montessori environment. This surprised me because everything I had ever learned throughout my education taught me that Montessori was by definition an approach to help children with varying needs explore at their own pace.

Quick Montessori Cliff Notes for those who are unfamiliar:

The Montessori environment allows children to engage in their own activities (or “works”). The activity selection and pace is up to each individual child. They can perform the work individually or in a group. There is a structured group component of the day as well, but the guiding principles are focused on letting the child work within their own natural development. Some people believe that children on the spectrum may not have enough innate social development to thrive in an environment that does inforce a firm social structure. This was not our experience. We found this environment to comforting for Grayson. We also found him learning to read and respect the boundaries of the social development of other children. For a child on the spectrum, this is incredibly difficult.

As part of our diagnostic process the therapist asked to speak with Grayson’s Montessori teacher. After returning from the phone call she said “wow, I totally get why that environment works for him.” You see, there was something so nurturing and so individualistic about their approach with Grayson. And in a classroom of only 8 children and 2 teachers; Grayson had a lot of attention. And sometimes he requires a lot of attention.

Up until the diagnosis, and then up until the IEP meeting, it was always our intention to send Gray back to Montessori for his 3 year old year. And even though we understood all of the reasons to send him to the special education school; we had our own reasons to keep him at Montessori.

1. The environment was familiar to him. Many of his peers would move on to the 3 year old room. He knew the building and the classroom.
2. The rules were familiar to him. Grayson had already learned the rules, the schedule and the structure at Montessori. At a time when so many things were changing for him; it was hard to wrap our heads around more changes.
3. The school had become a comfort zone for James and I. We trusted the teachers. We valued their efforts to communicate with us.
4. He was thriving in the environment. Being around typical peers was helping Grayson progress in his speech and social development. We really worried about Gray’s regression or failure to continuing progressing in an environment without typical peers.
5. In an oddly selfish way, our friends were at this school. It had become a part of our social identify as parents. And the idea of making another change, retreating in another way, seemed scary.

In the end, we kept Grayson at the Montessori school for his 3 year old year. It was a decision that felt right from the beginning. And after weeks of talking and back and forth we decided to listen to our instincts. And, Grayson had an amazing year. He grew and changed and progressed in so many ways. He learned social ques and norms from watching the 22 typical aged peers in his classroom. He embraced rules and structure that were new to him. He found ways to communicate his needs and wants within the classroom.

As we sat back and watched his progress in awe, the time to yet again make a decision about Grayson’s future loomed over us. For Grayson’s 4 year old year we would have 3 choices (1) continue at the Montessori school (2) Mainstream School or (3) special education school. Again we listened to the recommendations on our team. However, this time our team was divided in terms of what exactly was the best environment for Gray. There were so many reasons for us to stay at the Montessori school. In the end we choose to prepare Grayson to enter Mainstream 4K. One of the biggest deciding factors for us was the speech and OT services. Right now so many of Grayson’s services happen in the house. And the ability to receive these services in the school environment meant more time at home just being a kid. Another big deciding factor was that Rowan will be at the Montessori school next year. My Grayson is a creature of habit, and we had too many questions about how Rowan’s presence would impact Grayson’s focus (or lack thereof). Lastly, we hoped that Grayson could benefit socially from starting 4K with all of the other children who would move throughout the grades with him in our school district.

Grayson’s goodbye to the Montessori school was sad for all of us. He grew there. He changed there. He went there as a two year old struggling to find his voice; and he left as a 4 year old with so much to say. I went there as a scared and confused parent, and left with answers, a diagnosis and a plan. I am so grateful for the Montessori environment. I am thankful for Grayson’s amazing teachers and aids over our 2 years there. I can say whole heartedly that without it, without them, I am not sure that I would be holding this Mainstream 4K shopping list in my hands.

This next year will be another year of many firsts for Grayson and for our family. But we will face them like we have faced every other first we’ve met along this journey; face on, full of hope and ready to move mountains!

JS

My son Rowan is one of the happiest kids that I have ever met. He loves to sing and dance and run and climb. He likes to throw balls and he likes to twirl. He likes to watch movies about trucks and cars and he likes to watch movies about princesses. Sometimes he likes to roar like a lion, and other times he likes to flap his arms and pretend that he is a pretty peacock. When he sees me get ready in the morning sometimes he likes to play with my make-up brushes on his face. Other times he likes to throw my hair ties in the toilet and giggle. At times he likes to run around in only a diaper. Other times he is happy in his ruggedly handsome “boy” clothes. And sometimes he likes to take my scarves and shirts and wear them around his neck. He refers to these as a “beautiful dress.” You see, Rowan likes all kinds of things. And I LOVE that about him. I love that he finds ways to express himself. I love that he does not feel bound to like one particular thing or do things one particular way. He marches to the beat of his own drum. He is clumsy and silly and full of spit fire. Just when we think we have him figured out; he reminds us that he is full of surprises.

Rowan is a very emotional child. And I have NO CLUE where he gets that from (ok, I’m kidding…he may possibly get that from me. A little. Maybe.) It is very important to Rowan that people listen to him and include him in things. It is very important to him that you ask him questions if you are asking other people. It is very important to him that you acknowledge him and offer praise. If we forget to praise him he will say “good job Rowan” to himself. I love this about him. I love that he is proud of himself. I love that he wants the positive feedback. And I know that part of this is because Rowan is Rowan. And I know that part of this is because Rowan is the brother of someone with ASD. I know that too many times a day I have to distract myself from Rowan to address a need or behavior of Grayson’s. I know that sometimes we pacify Rowan longer than we would like with an iPad or a coloring book so that we can fix a problem that Grayson is having. I know that many times in a day Rowan has to “trade” with his brother because Grayson wanted the yellow plate. I know that at the end of the day Rowan is always left with the brown tootsie pop or the slightly broken cookie. I know all of these things. And these are the things that swirl in my head as I lay in bed at night. I think about all of the compromises Rowan makes for his brother. I think about the patience and understanding and compassion that this little two-year-old has already learned. I think about his adaptability. I am proud of his adaptability. I hope that he can teach his friends at school to be just like him. I hope that having a brother with ASD makes Rowan better. A better brother, a better friend, a better person. Because there are a lot of times that having a brother with ASD may make someone feel invisible; not my Rowan. Rowan will make himself seen. He will make his presence known. He will twirl into the middle of the room and he will hold his brother’s hand while he is sad. He will be wiser beyond his year. And because he is all of these things…I just simply do not care if he wants to wear princess underwear.

I do not want to launch a huge gender debate. In a changing time where we openly talk about “gender fluidity” I think it important for parents to understand their role in their children’s gender identity. Actually, I would like to see parents take less of a role. Let your kids be kids. Without rules. Without introducing your own ideas about what they should or should not wear. What they should or should not play with. Let your children do the things that make them happy. Teach them to be good and kind humans. Take away the negativity and stigmatism about things that are different. Create a life of openness for your children. Encourage them to express themselves. And then do not back away or balk at them when they do.

I am raising two very different children. I know that Grayson is Grayson and Rowan is Rowan. They have different interests, different tendencies, and different instincts. They like many of the same things, but sometimes in different ways. They play with many of the same things, but sometimes in different ways. They explore many of the same things, but sometimes in different ways. And we let them do this. In our house sometimes things are not always conventional. The people who come into our house embrace the uniqueness of our boys. All of Grayson’s therapists know that Rowan love to wear my scarves as dresses and they always tell him that his dress is beautiful. They are not worried about Rowan behaving “too much” like a girl. They only care that he is happy. Why? Because that is the environment we have created in our house.

This weekend Rowan hit a home run in the potty training department and it was time to purchase underwear. I went to the store in hope that maybe, just maybe, the world had evolved enough that I could find some of the more popular female Disney characters in the boy section of the store. After all, many of these Disney movies include a prince counterpart. And what is more manly than a rugged beastly man and the superhot princess he just landed himself? I was sadly mistaken. The girl’s area for underpants was about 3 shelves long, while the boy area was only half of shelf. Girls could choose from a number of different Disney packs, female super heroes, girl Nickelodeon characters, days of the week underwear, etc. The options were pretty much endless. Boys could choose from much lesser known male Disney characters, Mickey Mouse, Paw Patrol and male Super heroes. As I perused the aisle it made me mad that boys and girls did not have all of the same options available to them in their section. I had absolutely no problem grabbing one of the girl Disney princess packs for my son. I went to the store to purchase underwear that Rowan would like. And I could literally give zero shits about the color or content.

When I got home we pulled all of the underwear out…Spiderman, Nemo, Buzz Lightyear, Rapunzel, Cinderella, Ariel, Mickey, etc. He was so excited about each and every pair. They were all so different. The Mickey pairs were very bright primary colors. The Nemo pairs had a huge giant fish across the entire back. The princess pairs were colorful and swirly. I asked Rowan to pick his favorite and he said “Spiderman”. I asked him again and he said “Nemo.” I asked him again and he said “Rapunzel.”. He loved them all. Just as I knew he would.

Yes, my 2 year old son likes to wear dresses and sing princess songs and he sleeps with two dolls. And he is one of the sweetest, happiest, most intelligent two year olds I know. He loves what he loves; and I love that about him. I am tolerant of a lot of things. And the reason is simple…demonstrating tolerance teaches tolerance. Let us all take the time to demonstrate tolerance to all things in our lives. And in turn let us all learn to be more tolerant of all things. Yes, my son has princess underwear. And if that bothers you…I don’t really care.

JS

So much of what I write here is about our family. About autism and how we navigate that part of our life. And sometimes that piece feels so big that I am thankful for my strength.
I am proud of that strength. That strength is earned. It comes from the choices and decisions that brought me here. That led me to my husband. To my children. To my life. Some of you may not know that I was married once before. I got married so young. Before I knew who I was. Before I knew what I wanted. I tried to be half of something else before I was whole on my own. When I left that relationship I called into question a lot about myself. Why I made the decision I did. Why I choose something that was not good for me. Why I could not make it work. Why I gave up. Why I started over. I spent more time than I was comfortable with thinking about that relationship. Learning from it. Vowing to be different. To be better. 

It is a part of my life that I keep close to me. I did not put it on shelf and file it away. I keep it close because it was a part of my journey. It changed me. I was broken; and then I healed. Remembering that helps me remember that I can survive anything. It helps me remember that my strength comes from within. From my experiences. From my life. And somehow, remembering that seems to enhance my strength.

I think we all feel broken at some point. Falling down is a part of life. It is what teaches how to stand back up; bruised but not ever truly broken. Earnest Hemingway said that “we’re stronger in the places that we’ve been broken.” And I know this is true. I know that this is true because I have been broken. I have fallen down. I have made mistakes. I have been weaker than I wanted to be. I have questioned myself. Questioned my strength. Questioned my ability to heal myself. 

And, like anyone who has felt broken before understands; one day we just stop feeling so broken. We teach ourselves to focus our love and our energy in the broken places. We will them to be stronger, better. And after we are healed we are stronger. Stronger for having had the chance to focus our love and our energy. Stronger for having been broken. 

We move forward at first because we have to; life keeps moving. And then slowly over time we move forward because we want to. Because we are not afraid of it anymore. We stop looking at what is behind us. We learn that is does not matter anymore. We learn that we do not need it anymore; maybe we never did. 

We look ahead, forward. Because backwards is no longer an option. Because moving forward is better than standing still. Because moving forward gives us hope. Makes us strong.

Sometimes things happen in our lives that throw us of course. Life can shake us to our core and sometimes scare the crap out of us. Those are all challenges. Challenges that only come our way because we are strong enough to overcome them. 

I know that I am stronger than I ever imagined I could be. I am stronger because I had to be. And learning to be strong also taught me how to be brave. How to endure. How to start over. 

When I feel like my life is getting bigger than me; I remember all that I have already overcome. And, I thank God for each and every single hard thing that stood in my way. Because all of those things came my way and I fought through them. I moved forward. I took the lessons that I needed from them; and I moved on. 

Sometimes we choose to be strong. And sometimes we are forced to be strong. And sometimes you may feel forced at first and then realize this is something you should have been choosing for yourself all along. Because life has a funny way of working out exactly the way it is supposed to.

To the people in my life being asked to be stronger than they want to be right now; you can do this. Because you can do anything. You are surviving. You are growing. Learning. Pushing forward. You are already better; stronger. One day you will look back at this moment and you will be thankful that you did not let it define you. You will be THANKFUL for having been broken. You will be STRONGER for having been broken. You will be YOU for having been broken.

JS