Open Letter to the 4K Class at Williams Bay Elementary…

Dear Munchkins –

Hi guys! Welcome to 4K!!! You are so adorable in your Spiderman backpacks and sparkly Elsa dresses! I just know that you are going to have an amazing year exploring your beautiful new school and expanding your brains. This year marks the first year of 13 that you and many of your classmates will spend together at Williams Bay school. Many of you will make friendships that will last a lifetime while you are at this school! I should know, my very best friends are people I met in grade school! Growing up in a small town is an amazing thing. You get to know people. Like, really know them. You will come to know more about the people in your classroom than you know about some of your distant relatives. This is both a blessing and a curse.
You are too little to understand this right now, but you have so much power! Yes, you! You have the power to create a space in your 4K room that is filled with love and respect and acceptance. You have the power to embrace things that you do not understand. The power to see all of the wonderful things that make people unique and special. You have the power to expand not only your brains, but also your hearts. And then you have the power to go home and share your infinite wisdom with your family and your friends. Because even though you are only 4 years old, you have the power to love unconditionally. This is something that gets harder as you grow up. We need brave kiddos like you to learn about unconditional love and to hold on to it. We need you to teach those in the world who have forgotten what it means to love without condition. To tolerate without reason. To believe without hesitation.
Do you see that little boy over there shaking with excitement? The one who did not answer you when you asked him his name? That is my son Grayson. Grayson is the most wonderful little boy. He is filled with passion and love and energy. He loves space and throwing rocks and eating suckers. He may not look at you when you talk to him, but he hears you. He may not answer you when you question him, but he is screaming the answer on the inside. He may not join in your group play, but oh boy does he want to. You see, my son Grayson is a little different from you and me. Not bad. Not better. Or worse. Not weird or naughty. Not shy or reserved. Just different. Grayson has autism spectrum disorder. I know, lots of big words!! Let’s call it “ASD”. And sometimes Grayson will act different from you. Sometimes you may not understand why. And that’s ok! Grayson is just being Grayson! Silly, wonderful, loving Grayson. Can I ask you a favor? Ask him his name again. This time a little slower. Look at Grayson’s eyes, and wait for him to look in yours. Invite him to come and play with you. Understand that sometimes he will say “no”. Remember that he is not mad at you. Know that he still wants to be your friend. He probably just needs a break.
Sometimes Grayson gets wiggly. Do you know what it feels like to get wiggly? Have you ever had to sit still in the car for a very long time? And right at the end you begin to lose patience and you get really excited to get out of the car? Well, that’s how Grayson feels a lot of the time. He is wiggly and just needs a break. And sometimes when he is wiggly he does things he does not mean to do. He may knock over your toy or push you away. Grayson is so sorry when he does those things. Sometimes his wiggly body just has little bursts that cause him to be wiggly with his hands. Can I ask another favor? (I know, I’m sure going to owe you for all of these favors!) If Grayson gets wiggly and does something you do not like, take a big deep breath, softly tell him you are done playing. and walk away. When Grayson is done being wiggly, he will come find you to say that he is sorry. I know! It is really hard to walk about when someone makes you mad. But Grayson is different, and sometimes we can help people who are different by understanding and giving them space. I never want you to get hurt! So if you do not feel safe, please tell your teacher in a soft and calm voice. The teacher will make sure you are safe,  and she will help Grayson with his wiggles! Sometimes when kids try to help Grayson on their own, it makes him more wiggly.
Being a kiddo is no easy task! Adults ask you to be brave and smart and courageous all of the time. Sometimes they ask you to do things that they cannot do themselves. You are asked to share your toys and use your manners. You say “please” and “thank you”. And each day you get a little bit older. You become a little more of the grown-up you will one day be. And sometimes as kids get older they forget how easy it is to treat people, even people who are different, with love and respect and acceptance.
I know I have asked a lot of you today! And I promise to bring in some really yummy treats  to say thank you for all of these favors! But for now I will give you the only gift I can give; my deepest thanks for accepting my son Grayson. It will be very hard for me to send him to school with you each day. I will worry about him every minute I am not with him. I will fret over the things I cannot control. I will overthink the things I can control. I will fear that my message did not reach you. I will pray that it did. I will give you the gift of my thanks. And I will give you the gift of my son. I know in my heart that this year Grayson will teach you, just like he has taught me over the past 4 years. He will teach you about patience. He will teach you about persistence and endurance. He will teach you about being different. About accepting difference. And despite his difference, he will teach you how to love him. How to be his friend. How to embrace all of the wonderfully different things about him. And about you.
Kids, you have so much power! In all of your four year old glory you can help me with one more simple task…you can help me change the world! Let’s make this world a safer, better, more tolerant place for kiddos like my Grayson. Let’s do it together!
Grayson’s mommy

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Zones of Regulation

Autism treatment can sometimes feel like the “try everything” approach. And believe me, in our short time on the spectrum we have tried A LOT! Daycare (for socialization), essential oils (for calming and sleep), clean eating (for behaviors), and the list goes on and on. The amazing thing about committing to ABA therapy is the “team” that you inherit in doing so. Our roster is deep. And even though the players change from time to time, we always feel the comfort of the team standing beside us. It also helps to ease that “try everything” mentality. Because for right now, in this moment, ABA is the method that we are committed to. And there are so many wonderful behavior-change techniques that we incorporate into our methods, and they are all a part of the same treatment plan. It feels a little less like a drunken game of darts, and a little more like a calculated game of chess. Just call me Bobby Fisher.

Part of our treatment is a learning system known as Zones of Regulation. I’ll refer to it here as “zones” because that is how we refer to it around our house and with our treatment team. Zones is not a therapy; rather an integrated system developed to help children learn and explore their own ability to control and regulate their emotional responses. The implementation occurs through a few different phases; which are dependent on the age of the child. Grayson started with this treatment around March of this year, just before his 4th birthday. At four years old the treatment requires a pretty slow integration. In its entirety Zones is intended to help people first discover their emotions (truly understand what it means to be happy, sad, angry, scared, excited, etc.) The initial goal is she him demonstrate an understanding of what the emotions look like. In our experience Grayson learned to demonstrate his understanding through facial/emotion recognition using picture cards or by identifying or imitating the emotions of people he sees in person or on TV.  Our team incorporated feeling and emotion cards into his treatment time. And slowly overtime Grayson began to correctly identify the emotions of himself and other people.

The next step of the treatment was to begin to associate the emotions with colors (each color is a zone). Blue Zone includes: sad, sick, tired, bored and moving slowly. Green Zone includes: happy, calm, feeling okay, focused, ready to learn. Yellow Zone includes: frustrated, worried, wiggly/silly, excited, loss of some control. And the Red Zone includes: mad/angry, terrified, yelling/hitting, elated and out of control. For the most part, Grayson relates the colors to the feelings/emotions that are the simplest to understand. In our house, Blue is sad, Green Is happy, Yellow is wiggly and Red is mad. We are still working to evolve his understanding of the zones and the colors to include all of the emotions; even the ones that are harder to explain and identify.

Once Grayson more fully understands the zones in their entirety, then we will begin the next phase of the treatment; regulation. Anyone who has parented a four-year-old knows that regulation is no easy task. There is so much running through their heads in any given moment. And there is so much temptation. So the trick to this therapy is to use the zones to regulate and control the temptations. I am excited to see what comes next. Because I am impatient and excited (I am in the yellow zone) I cheated and read ahead. So I know that lies ahead for us and I cannot wait. We will work on building Grayson’s toolkits for moving from zone to zone. We will teach him to recognize what zone he is in. And, if appropriate how to help move himself into a more appropriate zone. Both the red zone and the blue zone come with their own coping box or toolkit. This will be a “kit” of things that help Grayson find his green zone. The yellow zone is usually a sign that Grayson has some extra energy to expel. So the best “fix” for the yellow zone it to introduce a sensory activity or some way for him to get a physical burst of energy out of his system so that he can refocus and settle into the green zone.

Another big part of the zones treatment is a deeper understanding of triggers. First we will learn to identify and avoid triggers (SO MUCH EASIER SAID THAN DONE). This is something we already spend a lot of time, but at Grayson’s age the triggers change a lot and they are often difficult to control. The real breakthrough in the zones treatment will be when Grayson learns to recognizes and avoid his own triggers. And the realist in me knows that we are probably years from this breakthrough. But the optimist in me feels better just knowing that it is ahead.

As I write this I realize just how much I have learned about the zones therapy over the past six months. I have a tendency to go “all in” when we introduce a new treatment. I want to know everything about it. So, I ask a million super annoying questions to our case manager. I research (read: Google) everything I have access to. I talk to other people who have experienced the same thing. In our world information is power. And the more I know the more powerful I feel to fight through some of Grayson’s symptoms.

In our lifetime as parents I am sure that we will try a million different techniques and strategies. And sometimes we will knock it out of the park and sometimes we will fall flat on our faces. And I do not think there is a parent out there who does not expect the parenting journey to go that way. The truth is, we leave the hospital with these precious little kiddos after birth without a map. We leave with a hope, a wish, a prayer and a whole lot of love. And somehow armed with only those things we navigate all of the ups and downs. We do our best. We try anything and everything we can to give our kids the best possible life. And somehow, no matter what, it is enough. Doing everything you can is enough. It has to be.

JS

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The Truth About Marriage and Autism

Over the past several months I have shared so much about our lives in this space. We talk about parenting and advocating for our children. We talk about struggling to get through the day. We talk about different aspects of autism in a quest for greater understanding. We talk a lot about dynamics. The dynamic between myself and Grayson. The dynamic between Grayson and his brother Rowan. The dynamic between Grayson and his classmates. Between Grayson and the world. And that really just scratches the surface of the relationships in our life impacted by Grayson’s diagnosis. I have talked about things that are true. Things that are hard. Things that are almost too difficult to say, or to hear. And from somewhere inside of me that I did not know existed when I started this journey, I talk to you. I tell you all of the ups and downs of our life. You have come on this journey with us. And for that, I thank you.

Today my husband and I celebrate our 5 year wedding anniversary. Sometimes it feels impossible that 5 years have gone by. And sometimes it feels like we have lived 5 years since last Thursday. I think that ebb and flow is part of the marriage gig. A marriage takes on the life of all of the things happening around it. When I stood in front of my friends and family and vowed to love my husband forever; I had no idea what twists and turns would be in store for us. This 5 years of marriage has been filled with so many wonderful moments. We have experienced so many firsts together. We brought 2 amazing little boys into this world. We have seen each other through job changes. We have supported each other as we pursue additional education and training. We bought a home together. We navigate the ups and down of all life throws our way. We try our best to be what the other needs. Even in the moments when we have nothing left to give. And then 2 years ago we sat next to each other and heard the words “your son has autism spectrum disorder.” And in that moment, and in every moment since, we were changed. How could we not be?

Did you know that the divorce rate for parents of children with Autism Spectrum Disorder is 80%? That is shocking right? That is over 1.75 times higher than the national average of 45%. And as shocking as that number seems, I can tell you that I completely understand. I understand because I am in marriage with a child on the spectrum. I feel the weight of the diagnosis in our life, on our marriage. Every single day. We feel pushed and challenged and called to be stronger than we know how to be. We choose to put our children first and to fight every day to be better. And then we both go to work and try to give 100% to our jobs. To the careers that afford us the ability to purchase new items for our treatment space. To our employers who allow for leniency in our scheduling so that we can make it to appointments.  And then we come home to a house that needs to be cleaned, laundry that needs to be folded, and children who need to be snuggled. And then after they are both tucked in, and after we have prepared for the next day, we have to dig deep inside of ourselves to find something left to give to each other.

When I met James I was nineteen years old. My life was the definition of simple. I was working part-time as a nanny for teenagers during my summer home from college. Which mostly meant that I was working full-time on my tan. I worked during the day and then spent the evenings swimming and basking in all of the wonderful Lake Geneva summer glory. And during that summer I met James. Life was easy and fun and we had absolutely no idea what lay ahead. The path that lead James and I to the life we have today was not straight. Our lives took us in different directions. And as life continued to twist and turn we found our way back to each other. When we reconnected after six years we were so different from the teenagers we once were. We understood more about love and loss. We understood more about being in a relationship. We understood more about life. Both James and I were married and divorced in our mid-twenties. I think it is important to share this (and I asked my hubby’s permission before outing him) because I want you to understand that I truly understand how difficult it is to join your life with someone. In my first marriage I joined my life with someone before I had any idea who I was alone. You see when I was younger I bought into the notion that I should be looking for a partner that was “my other half”. Someone to complete me. And the first partner I choose for myself fit the equation in my head. I was serious and he was goofy. I was rooted and he was up for adventure. I thought that by him being all of the things that I was not, we somehow made a whole. I learned the hard way that marriage is not about finding someone who completes you. It is not about being the other half of anything. Marriage is about two whole, complete people finding each other and living together as a pair. Because it takes two full people to complete a partnership. I realized that my earlier vision of love and relationships painted me as only half of a person. And, who wants to be half of a person?

In my life with James I have always looked at us as partners. Two whole, complete people who come together every single day to face whatever life throws our way. Being married is hard. Every single day. And that is just the truth. I sometimes refer to our journey with Grayson as a “pressure cooker” for our family. You take good people, in normal circumstances, with normal obstacles; and marriage is tough. You take those same good people and you throw in an element that stirs things up and adds pressure; and the challenges in a marriage take on a whole new life. There is so much pressure. So many reasons to shut down. So many opportunities to give up. So many moments to dig deep. But every day I wake up and I choose not to be the 80%. I choose to fight through the obstacles that we face. When I mess up I choose to look for ways to be better the next day. And sometimes, the next day, I mess up again. Sometimes I am under slept. Often times I am over worked. And most times I am just doing my best to get by. But marriage does not stand still. It moves with you. It follows where you lead. So even when you need a break it keeps going. Like a warm blanket. Or maybe a strait jacket depending on the day. Marriage is a decision I make every single day.

Is our marriage harder because of autism? Absolutely. I have seen firsthand why 80% of couples living with a child on the spectrum find it too difficult to make their marriage work. So I give myself permission to have moments of imperfection. I give my husband that same permission. I often give the example of marriage and autism being like marriage and a newborn; NOTHING positive is exchanged between couples after midnight when everyone is tired. So you come up with a rule: do not say anything. Just survive. Get through the difficult moment. Focus on the child. Focus on putting the fire out rather than throwing fuel on the flame. I break my own rule sometimes. And then in that moment I remember exactly why that rule exists. The rule exists to protect us. From ourselves and from each other. Because sometimes life gets real. Sometimes life gets hard. Sometimes we are beaten down, emotionally and physically. And the strongest marriages are the ones who learn to bear down, brace for impact, survive, and then move forward together. Happier. Better. More complete.

I choose marriage every single day. I choose my wonderful husband every single day. For a million reasons, big and small. I choose him. I am so lucky that he chooses me to.

JS

Today’s Lesson in Flexibility. Life on the Spectrum.

Today life served me up an important reminder; even the most concrete things need a margin of flexibility. We become so ingrained in our crazy schedule. We arrange all of the pieces of our life so that they fit just so. We push ourselves and our kiddos to move through the schedule and to check all of the boxes. We ask so much out of Grayson. We ask him to forgo the normal 4 year old experience to spend 25 hours a week in behavioral therapy. We set expectations and we push forward and then sometimes life stops us in our tracks. Life reminds us that we need to build flexibility into our schedule. We need it. And Grayson needs it.

Today Grammie picked Grayson up (just as scheduled) to go to camp at his Montessori school. We had a terrible night of sleep at the Sylfest house (not just as scheduled) and so Grayson got a later than usual start to his morning. He was excited to go to camp and when Grammie arrived they headed out the door. As Grammie’s car rolled into Lake Geneva Grayson grew increasingly worked up. Reiterating over and over that he did not want to go to camp. When he got to camp and saw his technician he started screaming “No”. Grammie, the teachers, the technicians, everyone tried to coax Grayson out of the car. But it just was not going to happen. So Grammie made the decision to take a break and head off to run a quick errand with Grayson. Grayson and Grammie called me a few minutes after leaving the school. My initial reaction was a learned reaction. My time on the spectrum with Grayson has taught me to know well the importance and benefits of our strict and over-the-top schedule.  I immediately thought of the schedule. I thought about losing 3 hours of therapy for the week. I thought about rearranging the care providers since the nanny was already in route to the beach with Rowan. I thought about all of the perfectly organized pieces of the schedule and I saw them completely falling apart. Then I realized that I needed a break. I turned my brain off long enough to realize that Grayson has not had an honest to goodness true “day off” since sometime in the spring. We always take Sundays off as a family, but on Sundays we are on the go non-stop. So while he may not be in therapy he is still following the schedule that James and I set. I called our technician and she spoke with our case manager. We were all in agreement; Grayson needed a day off. Grayson DESERVED a day off.

Today Grayson did whatever he wanted to do. In the morning he ran errands with Grammie. Then he went swimming at his great grandpa’s house. After swimming he had lunch with Grammie. During Rowan’s rest time the nanny took Grayson to the beach. (She was there in the morning with Rowan. It just so happens to be her birthday and I think what a gift it must have been for her to have that “free time” at the beach with Grayson). Today, there was a schedule. It was color coordinated and orchestrated to perfection. But today, we threw the schedule out. Today, Grayson just got to be 4. No one expected anything of him. No one took data on his goal achievement. There were no timers. There were no “hall pass” cards. Today, Grayson just got to be Grayson.

I needed this reminder. Especially right now on the cusp of our even-more-insane fall schedule. I know that we need to have schedules. I know that the insurance company regulates the number of hours of therapy we need to achieve in the week. I know that the work we are doing in therapy is important. But I also know that sometimes we all just need a day off. It was silly of me to forget that Grayson, just like anyone else, would need a day off.

Thank you Grammie and Christi for having the most wonderful day off with my baby boy! And thank you life for the reminder that every once in a while it is ok to throw the schedule out the window!

JS

 

Yes, and…

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

When autism literally kicks you in the face

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

 

More than words

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