I remember the first time that someone used the word “autism” in reference to Grayson. I remember it so clearly because it felt like I took a bullet to the heart. It was months before our actual diagnosis. Months before we knew just how long and crazy and complicated and ever-changing our journey would be. It was said so casually. So easy. Like “hmm, may it is autism.” Or a common cold, or allergies or maybe he was just 2. It was said in one instant and then it was quiet. Everything was quiet. Except, the people in the room around me were still talking. I just could not hear their words. My head was swirling with a million thoughts. Thoughts about life, thoughts about the future. Thoughts about the life I imagined for Grayson. For me. And the longer my head swirled the longer I existed in the silence. Watching the mouths of the people around me move. Knowing that there words were important. Knowing that they were probably explaining away their use of the word. Worst case. Not even something that should be on our radar. Except, it was. In that moment autism was not only on my radar… it was the only thing I could think about. It felt impossible; and completely possible all at the same time. It felt like it did not fit at all; and like it fit perfectly, too perfectly. It felt like an out-of-body experience. Except it was me, in my body, hearing words that you never imagine hearing as a mother. In that moment the parenting gig took a hard turn towards reality. Life was about to be real in way that I had not prepared myself for.

It was a pretty normal day. I was working from home so that I could meet with Grayson’s team. Back then our team was pretty different than it is today. By age 2 we noticed that Grayson’s speech was pretty significantly behind the speech of his same-aged peers. We had heard everything from “he will grow out of it”, “everyone hits milestones differently”, “maybe he just is not a talker” (this one really made me laugh. I mean after all….he was my child. This was most certainly not the case.) And so I gave our pediatrician a heads up that I wanted to talk about some delays at Grayson next well-baby check. Just a month later at Grayson’s 2^nd year appointment our pediatrician agreed that there may be more to the speech delay. She made a referral for us to our county’s Birth to 3 program. For those of you who are not familiar; Birth to 3 is a program provided by the county to help families gain access to early detection and in-turn to early intervention. The program requires a referral from a pediatrician and then a home visit for evaluation. And so we were referred and evaluated; the first of many evaluations that we would meet along our journey. And, it was determined that Grayson would receive weekly support for speech and behavioral development.

Each week the therapists came to the house and provided 45 minutes of service. Speech and behavior therapy with a two-year-old is actually pretty fascinating to watch. Because two-year-olds really do not do anything for any substantial amount of time. Back then life was moving from one 20 second activity to another. So the therapists would come in and follow him around 20 second stint at a time. They worked on speech. They introduced sign language. They tried little and big strategies to kick start Grayson’s speech. We recognized the effect of Grayson’s speech delay on his behaviors. We knew that if the speech did not come together soon that the behaviors would only continue to get worse. So, we invited these almost-strangers into our house to spend 45 minutes a week with our two-year-old. And, once a month we met as a team to discuss his progress. It was during one of these monthly meetings that it happened. The day the “a-word” was first dropped into our lives.

I was sitting on the floor interacting with Grayson (and holding my 4 month old baby). We were casually talking about our strategies. Casually talking about Grayson’s changes and progressions. Causally talking about all of the things that could be “primary”. See, when your two year old has a significant speech delay it is important to determine if the speech delay is primary or secondary. If it is primary then you hope that with time, and socialization, that speech will gradually get on track. If the speech delay is secondary to something else; then you will never truly understand the speech delay until you find the primary cause. This was a pretty typical topic of conversation during the meetings. We talked about his obsessive tendencies and said “maybe it is some early version of OCD”. We talked about his sensitivity to sound and touch and wondered if maybe it was some sensory issue. And then on this day, for the first time, our therapist very casually added “you know, I just cannot decide if I think it is autism or not.”

Autism? As in Austim Autism? Like, Autism?

And so I was silent, for much longer than was socially acceptable. As my head filled with questions and thoughts and fears my eyes raced between our two therapists. And then from somewhere inside I found the words…”I’m sorry, did you say Autism?” She realized in that instant she was telling me something I did not know. I think when someone says the thing that other people have been thinking all along there is a shared understanding. Kind of an unspoken “ok good, so we finally said it out loud.” Except this time, that was not the case. This time, she was saying something that I was not prepared to hear. She said something that I had never even imagined being a part of what we were going through. And yet, she had said it.

She recovered quickly; although I cannot say that there was anything gracious about it. Because, how can you graciously tell parents that you think their child might be on the autism spectrum? She told me that the team often pondered about autism symptoms, but that they had a lot of reasons to believe that it was not autism. Grayson is incredibly affectionate; he always has been. He makes deep connections with people; even people who he has not known for a long time. He craves social interactions. He is silly and funny and sarcastic. For all of these reasons and more; they were very hesitant to use the word. And so, we casually ended the conversation.

I spent the next few weeks trying to learn as much as I could about autism. And the topic continued to come up with our team. James and I decided that for our own peace of mind it would be best to make an appointment for an evaluation at a diagnostic facility. And so the process began. We were going to know in no uncertain terms whether or not Grayson was on the autism spectrum. It does not get more real than that. And so we were referred to the Waisman Center in Madison. In order to be referred Grayson had to have 2 hearing evaluations as well as another check-up and referral from the pediatrician. He thought the hearing test was silly; he had no idea just how un-funny it was. There were no problems with his hearing; confirming that hearing was not the primary concern. Our road to the test was a little complicated. We spent 2 months on the wait list for the Waisman Center; the waiting list to get put on the waiting list. They were under-staffed due to turnover and there was no end in sight. As each day passed Grayson came closer to age 3. And, at age 3 he would no longer be eligible for services through birth to 3. And so as each day passed we felt more unsettled. In many moments of desperation I reached out to a lifelong friend who had been such an amazing comfort during our journey. It is amazing to have friends that hold you up and push you forward. It is even MORE amazing when these people have awesome connections. This particular friends was a very well-known and respected SLP (Speech and Language Pathologist). And, within hours we were scheduled for an appointment in 3 weeks in Iowa.

I called this post “part one” because as you can tell our diagnosis journey was not short. I think the events of the day that we spent at the diagnostic center are important. They are a huge part of our story. And so, I will finish the story in another post. The story to this point captures a few things that are so important to mention:

1. Early Detection….it is honestly the thing that I thank God for every night. I am thankful that even as first time parents we listened to our instincts. I am thankful that we had people in our lives who helped us see the things that were difficult to see.
2. Early Intervention….we know so much about Autism today; and we know that when introduced correctly and early interventions help people living on the spectrum to live fully integrated, happy lives.
3. When the right thing isn’t the easy thing….there are a million moments I would have loved to turn a blind eye and pretend not to see the things right in front of me. But I could not pretend this away. I could not derail this journey we were on. This is our journey because it was meant to be. And so we had to see what was in front of us; even though it was not easy to do.

Today I will take Rowan for his 2^nd year check-up. And, I cannot help but reflect on how different I feel today than I did just 2 years ago with Grayson. I went to Grayson’s appointment filled with fear and questions and worry. I went to Grayson’s appointment feeling like we were getting it all wrong. I went to that appointment knowing that there was something in front of me that I just couldn’t see. Something that my son was trying to tell me. Something that seems so clear to me now. Rowan is a very typical 2 year old. In our house, the word typical has a big meaning. You see, typical does not just mean that he is walking and talking and hitting all of those normal milestones. In our house typical means that he is not showing signs and symptoms of autism. Did you know that the chances of parents having a subsequent child with autism are as high as 18%? You see, I was pregnant with Rowan by the time we began to see Grayson’s struggles. And Rowan was nearly 1 year old at the time we received Grayson’s official diagnosis. Can you imagine as a parent just how much that 18% scared the crap out of me? And so, when I say that Rowan is typical I mean a lot of things. I mean that he is walking and running and jumping and climbing. I mean that he is talking up a storm. He is talking and signing and telling stories and always telling us “thanks much.” I mean that he is tuned into the emotions of other people. He understands happy and sad and angry. He understands how to make someone feel better when they are crying. He says I love you. He throws epic tantrums. He changes his mind on a dime, because he can. He is 2. He is 2 in every sense of the word. And he is typical; in every sense of the word.

And so today we will go to his 2 year appointment. We will talk about his milestones. We will talk about his gentle and sweet demeanor. We will talk about all of the things that are relevant for typical 2 year olds. He is typical. And Grayson is not. And today that becomes truer than before. Because today is the first milestone that Rowan will pass on track that Grayson did not.

 

JS

People always ask us just how we do it. How do we get through moments that scare the crap of us? How do we take steps forward when we really want to run away? How do we face things head on when we want to duck for cover? How we push forward? How we have faith? How we keep going? Keep living? The answer is hope; and a heck of a lot of support. Sometimes I take deep breathes to clear my mind. Sometimes I cry. Sometimes I work out. Sometimes I completely fall apart. Sometimes I rise above. But all of the time; it is the love and support of other people that push me through.

Too many times to count I find myself in the kitchen after the kids are in bed sighing a big sigh of relief. Relief that we survived another day. Relief that they are in bed. Relief that I get 2 hours of adult time. Relief that we overcame the obstacles of the day. Just two weeks ago I found myself in this exact scenario and my husband walked into the room. I asked him “do you ever find yourself sighing the biggest sigh at this time of day?” He answered in his cool, calm way “every single day.”

Look, I know we are not alone. I know that parents all around the world have this same feeling when the kids go down. When they have survived the day. As parents so few of the moments in a day are their own. So few of the moments are filled with the things that are just for us. We live our lives for our children. We cook for them and clean for them and work to provide a home for them. We worry about them, we console and guide them. We prepare them for the world ahead. We put our needs on hold to provide for our kids. And because of all of this, sometimes we sigh in relief when they are in bed for the night. We sigh. We linger for maybe just 1 moment and relish in the survival. And then we start the preparation to do it all again the next day. We make lunches, we clean the house, we make schedules, we fold laundry. We do these things because they are a part of our schedule. They are the routine we have adopted. And we do them because they need to be done. And so, we do all of these things. And sometimes we are tired. And sometimes we wonder where we will find the strength to push on. And sometimes we cry. And sometimes we hold it all in. And sometimes we just cannot hold it in any longer. And in those moments we reach for our touchstones. You know, the people in our lives who help us through. The people who give us strength. The people who do not judge us or question our feelings. The people who understand our struggle; understand our survival. The people who forgive us for being less than perfect.

I did not understand just how much truth was behind the saying “it takes a village to raise a child” until recently. Dude, it takes a VILLAGE to raise a child. Like, a whole, fully populated village. As a parent you learn just how true this is. And depending on your parenting journey; some may realize this sooner than others. And so, you build your village. You fill it with your touchstones. You fill it with the people who are on your team. You remove the people who are clearly “not” on your team. You build your safe place in the middle of this village. And you stay inside. You become a part of the village And, it becomes a part of you. You do this because you have too. You do this because without it; it would be too much to handle bear.

We built a village. We filled it with our touchstones. We built a team. We removed the people who were not on our team. We built a village because we had to. The thing about being in the village; is that is happens very naturally. It happens because it was meant to happen. When your life gets off course you realize that there are 3 types of people (1) people who will ride the storm no matter what (the touchstones), (2) the people who will always have the best intentions and will do their best when they can (your team) and (3) the people who just do not get it. There is only room in the village for the first two types. And believe me, I wish that I had time in my day to sit down and talk to all of the number 3’s. To explain to them exactly what I am going through. To give them the tools and the strength to “get it”.

These 3 types of people present themselves very quickly once a storm hits. Things that were a certain way…seem different after the storm. And all at once the people in your life are sitting in front of you in 3 very specific; very different categories. And so, you build your village. You grab on to your 1’s and 2’s. You praise and thank them for coming with you. And you say goodbye to the number 3’s. Sometimes you say this without words. Sometimes that is just easier. They know…and you know. So you move forward. Safe in your village. Thankful to the people who have made the journey with you. Thankful in ways they may not know. Thankful in words you may not always speak as clearly as intended.

And so now, today, this is what I say to my village….

Thank you. Thank you for coming on this journey with me. Thank you for forgiving my imperfections as I navigate something I am struggling with. Thank you for allowing me to struggle. Thank you for holding me up when I cannot stand. Thank you showing me kindness. Thank you for loving me. For loving my family. Thank you for seeing past labels. Thank you for validating my fears. Thank you for what you say. Thank you for what you do not say. You are in my village because without you I could not bear this journey I am on. Because I felt your love and support so completely; that I knew your place was with me. Because I need you. Because in some way I know you need me too; you want to learn from me and this journey I am on. Because I want to share our journey with you. Because I can see that you want to share it too. For all of these reasons and a million more…thank you.

We all build our own village over time. It is a survival tactic. Ours went up fast and furious. There was a time that I felt trapped by our life; by our diagnosis. A time when we hibernated because it was easier. A time when I did not know how to feel safe out in the world. I do not feel like this anymore. Today, I know that the support we have built goes everywhere we go. It is all around me.  I know that in a moment of weakness you will grab my hand under the table and squeeze it when someone says something ignorant. I know that you will help me escape when I need an out. I know that you will divert attention away from the things I cannot let other people see. I know that you will keep me safe. Will keep us safe. I built a village because I learned that everyone does it; for a million different reason in a million different ways. I built a village because I am stronger now. Strong enough to say that I cannot do it on my own. And thankful every single day that I do not have to.

JS

It is ok if you do not know what to say to someone going through something that you cannot relate to. It is normal for you to feel unsure or uneasy about coming up with the right words. So many times I can see that people are struggling to understand how to talk to me about our life. I can see it in their nervousness as we talk. I can see it in the way the conversations seem to go on but really never go anywhere. I can see it in the conversations that are not happening anymore. I get it. You don’t know what to say. You are worried about saying the right thing and even more worried that you may say the wrong thing. But, to be honest, I don’t need you to say the right thing. I just want you to say something real. Talk to me in a real way. Because what I am going through is very real. The last thing I want is for every conversation I have to be about the things in my life that are hard. But, I need for it to be something that we acknowledge. I spent almost a year “in the closet” and now that I am out I am ready to talk to you about all the pieces of my life; even the messy ones.

Don’t worry, I’m not going to dump my life in your lap. I’m not going to overshare and give you the gory details. Our gory details circle is a pretty small and tight group. The people who are going to get those details know who they are. They know that with no notice I might fall apart. They know that sometimes I cry when I’m happy and sometimes I laugh when I am sad. They know that I am taking life one day at a time. And no matter how comfortable (or uncomfortable) it may make them they would never make me feel that way. So you do not have to worry about the yucky stuff.

Let’s talk about life. Let’s talk about treatments and prognosis. I’ll tell you how incredibly far my amazing son has come. I’ll tell you that I have more days that are filled with hope than sadness. I’ll tell you that we are doing our best. I’ll tell you that we hope to put gray in traditional 4K but we have some hurdles to cross this summer for that to be a real option. I’ll tell you that this year has changed me. Changed me in ways I struggle to explain.

Sometimes it is the relationships that are the strongest that suffer the most when something, or someone, changes so abruptly.  Because I’ve changed, and because we’ve changed; maybe our conversations are different now. I don’t blame you. I’m not mad at you. I don’t feel resentful towards you. I am not jealous of you. I get it. You see, some people are really great at growing together and other people struggle with it. Maybe you don’t know how to talk to me. Or maybe my life, in all of its scattered pieced glory, is just too much for you. I get it. It’s too much for me too sometimes. I have room in my heart to understand that people grow and people change; and I have room in my heart to believe that one day our conversations may be back.

Then there are the casual simple conversations with almost-strangers that fill me with so much joy. Just last weekend we ran into the parents of friends from high school. We had such a lovely conversation about life. A real conversation about my life and the things I am facing. And a real conversation about things that they are facing in their live too. And then we gave hugs and said our goodbyes. I left that brief conversation feeling so much joy. So much happiness that it was so easy for them to talk to us about things that are hard. It made me wish that all conversations were that easy. It made me feel like autism maybe wasn’t quite so scary.

I know it’s hard. I know you may not say the perfect thing. And I forgive you in advance for being nervous or hesitant. But the next time you see me or someone else living on the spectrum; promise me that you will have a real conversation with them. Because if we all stop being so afraid and so nervous to talk about autism then we can take the power away. We put the power back in our hands. I learned this year that things are only as big and scary as you let them be. Sure, there are days when all that we face scares the heck out of me. But those days are getting easier to handle. Why? Because I took back the power. I’m talking about it, learning from it, and now I’m putting it out there in a very real way for other people to think about.

I know you are worried about saying the wrong thing. Sometimes I don’t know that something will offend me until I hear it out loud. And this, like autism, is so specific to each person going through it. As part of my mission to put our message out there; I will share a few thoughts with you on the “what not to say list.” But please remember, this is just us. Someone else might feel completely different:

4 things I prefer not to hear…

1. The word autistic. I hate it. We choose to see autism as one part of gray. I prefer not to call him autistic because I refuse to let autism define him. He is Grayson; Grayson has autism.
2. “That’s not autism it’s just ________” (three, boy, a phase, etc.) Look, I get it. Sometimes Grayson’s behaviors look like every other three year old boy. But sometimes they do not. James and I have seen all of it. We live through the ups and downs every day. Try to remember that life is so much more than the one moment of time that you are seeing.
3. “He will grow out of it.” Actually, he won’t. Autism is a lifetime diagnosis. While early intervention and intensive therapy are the most proven treatments to minimize symptoms as Grayson moves through his life; he will always have autism. He will learn to cope. He will learn to replace his instinctual behaviors with more socially appropriate behaviors. He will learn to have appropriate emotional responses. But he will always have autism.
4. Any time someone tries to draw comparisons to Grayson from someone else they know with autism. Stop! They are not the same. Every child with autism is unique and different. And every parent NEEDS to see their child this way. It is part of the process…part of the survival. Sure, the social markers and many symptoms are similar. And you may know that gray’s limited eye contact is a symptom because so-in-so’s child who has autism also has poor eye contact. Instead say this “I notice gray makes eye contact occasionally, that’s great.” This conveys to me that you know something about autism, it acknowledges something real about Gray, and it is positive.

Let’s talk about things that are real; even if they are difficult. Let’s show people in our lives that even though we cannot relate; we are trying. Let’s talk to our children. Let’s teach our children acceptance (by talking about it) and tolerance (in the way that we talk about it). My biggest hope is that Grayson provides an opportunity for people in our life to talk to their kids about difference and inclusion. Because if I have learned anything over the past year it is that the actions of other people impact this journey we are on.

Just remember, you don’t have to be perfect. You can slip up and say the wrong thing. If you say the word “autistic” I may gently guide you to different wording, or I may not say anything at all. Every day, every conversation, is different. Let’s all be real. Let’s all be compassionate. Let’s all be better.

In honor of April 2nd – National Autism Awareness Day. In honor of Grayson.

JS

People often ask me how we find the strength to tackle of the things we encounter in the course of the day: The truth is; I don’t really think about it as “tackling” anything. I just think about it as our life. Sure, some days we are moving in a million directions and we feel like at any moment the bottom might drop out. But, a lot of days we move through our life with an easy calmness. People who look into our life from the outside probably would not use the word “calm” to describe our life. But, I think over the past year we have found ways to bring calmness to even the craziest of moments. And sure, our calm might look like something completely different in your house. That is why this is our journey; our life. Some days I look at the pieces of our life scattered across my color-coded calendar and I feel my eyes start to glaze over. On the days when I feel like our schedule, and our life, might just swallow me whole; I remember my three year old son. I think about his life and his schedule. I think about all that we are asking of someone so small and so precious. I think about my son and I remember that if he can do it; then so can I.

One of the most frequent questions people ask us is about Grayson’s treatment plan. I am comfortable sharing this information because this is our journey. For almost a year now Grayson has been in an intensive ABA Therapy program receiving 24 hours of therapy a week; 2 days a week he receives 3 hours (6 of the total 24) of ABA Therapy with his team at the Lake Geneva Montessori School. Grayson receives 2 hours a weeks of speech therapy through our ABA program. And, Grayson receives 1 hour a week of speech and OT through our school district. If you’ve been doing the math then you see that our three year old is spending nearly 30 hours a week in school and therapy.

I know this sounds like a lot. And there have been so many moments over the past fifteen months that I questioned if this was the right thing for us to do. But, I understand the benefits of early intervention and I see with my own eyes the differences in my son. So, we push forward with a schedule that keeps all of us in a constant state of “go!” We invite technicians into our home at all hours of the day. We arrange our schedules so that we can be in the home for meetings and check-ups. We sacrifice family time. We spend our down-time after a long day of work making schedules, emailing our team and resetting the house for the next day. We do all of these things because they are helping. We do all of these things because we took a step back and evaluated the short-term sacrifices against the long-term gains. Sure, cleaning my house every night so that it is ready for a fresh crew of technicians the next morning kind of sucks. But, in the grand scheme of things it is such a small sacrifice to make.

I cannot say enough wonderful things about Mercy Options Autism Program. Over the past year the members of this team have grown to be parts of our family. These technicians are in our house every day. They see the best of it and the worse of it (I’m talking about Grayson and also my house!) They see us have it all together; and they see us letting it all fall apart. They see us saying exactly the right thing to Grayson; and they see us getting it all wrong. They see us celebrate the wins; and they see us grow frustrated with the losses. And every step of the way they are there to provide support to all of us.

There is no confusion in my mind that Grayson is the one in our family with autism. But, autism is something that is a constant in all of our lives every day. We are all learning and growing and making a million mistakes. Anyone who knows me understands that being in control is kind of my thing. Nothing makes my heart smile more than when all of the pieces come together the way I plan them too. This year was the ultimate lesson in planning. You can plan and organize and prepare until you are blue in the face. And at the end of the day; it may all still fall apart. And that is ok. As long as I start and end each day surrounded by my two beautiful sons and my amazingly strong and supportive husband; then the only truly important things in life are going exactly to plan. The middle gets a little messy. But, that’s life.

On the eve of autism awareness month I have so many things on my mind that I am excited to share with you over the next month. Last April I was in such a different place. We were 5 weeks post diagnosis and autism felt like something I needed keep in a box; tucked away safely where it could not hurt us anymore. I am going to write a lot this month. I am going to talk about awareness and tolerance and patience. I am going to tell you more about my amazing son Grayson and the way he surprises us every day. I am going to tell you about my strong son Rowan and the way that he is already so kind and patient and tolerant. I am going to talk about coping skills. I am going to talk about all of these things because today the autism is out of the box. I know that it may hurt us. I know that it may challenge us and set us back. But I also know that it is teaching all of us to be stronger and better. I know that it is making all of us be more tolerant and aware. And that is what this month is about.

Thank you for being here; for coming to this space that I have created to talk about my life. I am so touched by the shares and the comments after the first blog. I hope that the experiences, the good and the bad, can make even a small difference to someone else going through a similar struggle. If you want to follow my journey…consider clicking the “follow” button within the site to receive email notifications when I post. I would also love to see your comments below. I tried my best to read through the comments that came in via Facebook; but life these days leaves a little less time for Facebooking. (Side note: Facebooking is not auto-correcting as a misspelled word…hello 2016).

Thank you thank you thank you.

Happy Autism Awareness month. Be Aware. Be Tolerant. Be patient. Be Kind. Be Supportive. Be all of those things every day, because it is the right thing to do. Be all of those things even more this month to help teach other to be the same way. Some days it does feel like my life is in scattered pieces. Sometimes I spend hours looking for the glue to hold it together. And some days; the simple kindness of someone else is the glue that binds.

JS

Ok, so…I’m blogging!!! I’ve been writing this blog in my head for over a year now and it feels a little surreal to be putting real words down to put out there for real people to read. So here I go! I think the best place to start is with the cast of my life…my pieces of love.

Me:

My name is Jessica. I am a full-time working momma, wife and general organizer of life. Some days I feel like my real job is only 1 of the full-time jobs that fill my days. I live in Williams Bay, WI with my hubs and our 2 beautiful little boys. Our life together is very full; full of love and full of chaos! When I was pregnant with my youngest son people would often say “wow, 2 boys…you’re going to be busy.” At the time I thought it was kind of funny. Now, I know EXACTLY what they meant! We are all boy, all the time! We jump, we roar, we race, we throw, we climb, and we are always messy! But, I love every crazy, chaotic, messy piece of my life.

I’ve always loved writing and reading. I love the idea of turning my life and my experiences into something that I can share with other people. There is nothing I love more than sitting down with a great book and entering the author’s world. That happens less and less these days. The books that rule my world lately are “Boom Chica Boom”, “Brown Bear Brown Bear” and “Moo Baa La La”. As a mom I think it is always difficult to give myself permission to carve out a piece of my day that is just for me. In the hustle and bustle of everyday life this is so much harder to do than it should be. After all, don’t we all deserve 30 minutes a day that are just for us? But, if I stop to think about it long enough I think about all of the things I could do to fill 30 minutes. I could FINALLY write the thank you notes for my son’s birthday (the cards that have been moved from pile to pile for almost a month). I could fold laundry (because laundry in our house is a moving target), I could vacuum (didn’t I just vacuum yesterday?), I could make lunches, plan dinner, grocery shop, pick-up toys, make beds….you get it. The truth is there is always something that I could be doing. So the trick is to turn off my brain and truly give myself a pocket of time that is just for me. I started adopting this principle about 4 months ago…and believe it or not I am starting to be better at it. I still feel guilty when I am in my room working out and I hear one of my little guys call for “momma”. But, I remember that I have a beyond capable hubby. I don’t know if that guilt every completely goes away, but stay tuned…

I have one of those jobs that is always in motion and is pretty difficult to truly punch out at the end of the day. I am Talent and Acquisitions Manager for a global manufacturing company. I’ve spent the better part of the last 3 years helping grow the employee count from 500 to over 1,000. And, I’m about to take my 4th trip to the Czech Republic in the past 13 months to help recruit and launch a new facility. Being away from home with 2 kiddos while I am at work is difficult. Being away from home for weeks at a time out of the country for work is darn near impossible. I am so fortunate to have my hubby at home to hold down the fort.

My life is a balancing act. I am always trying to make sure that my time and attention are distributed in a way that I can feel good about at the end of the day. But the truth is that I have a really hard time being less than perfect in any area of my life. So, I am often trying to do it all. Asking for help is not one of my strengths. I never claim to be anything more than a work in progress. So part of the journey I’m on includes a few simple goals: (1) Find joy and happiness in simple moments. I’m a planner and an orchestrater and a believer that moments should be AMAZING! And while this is a great idea I also want to raise my children with a realistic expectation that not every moment is going to orchestrated and epic. (2) People change and relationships change and it is ok to move on. This topic is something I will probably spend time talking about at some point. Our life has changed a lot in the past 2 years. And as a result of it our relationships have changed. It seems crazy that it so difficult to move away from relationships that are not good for you. I need to be better about this. (3) Sometimes good enough is good enough. At the end of a lot of days I go to bed saying “I could have been better today.” Better for my kids, better for my husband, better at work, better on my meal plan…just better. Then I remember, that I survived the day. And, I should probably just shut my brain up and get some sleep before I wake up and do it all again.

Sometimes life is harder than I thought it would be. But sometimes, it is so much sweeter and more wonderful than I ever dreamed it could be. Life is about having perspective, leaving room for imperfection and sharing it with people who make you better.

James:

When I talk about my husband at work or with friends I often refer to him as “Saint James.” James is not your typical husband or daddy; he is such an incredible partner and often carries way more than his share of work around the house and with the boys. Watching him with our boys is just the best part of my day. I don’t think that there is anything more fulfilling than when you start to see your favorite parts of your spouse come to life in your children. Our oldest son is James’ mini. Not only do they look like twinkies, but they have so many of the same mannerisms. James has a connection with each of the boys and I cannot wait to see how their relationships develop. I love to listen in from the next room when the boys are asking James questions or trying to talk him into just “one more cookie”. Sometimes I wait a minute longer than I’m comfortable with when the boys are sad or upset because I know that daddy needs just as many opportunities to kiss the boo boos as mommy does.

The short version of my relationship with James can boil down to a few romance novel faux pas: summer love and second chances. James and I first met when we were 19 years old. It was Lake Geneva summer love at its finest…you know the kind of thing that really isn’t love at all! It was summer and it was fun and before we knew it the summer was over and life pulled us in 2 opposite directions. Although out of sight, James was never really out of my mind. We reconnected 7 years (and a lot of life experiences) later and started our life together. I am not a perfect spouse. I don’t always change the toilet paper role (don’t judge me), sometimes I pretend I don’t hear the baby monitor (oh come on…like you’ve never done that!) and I’ve been known to occasionally overact to things (and by occasionally I mean usually). But the coolest thing about marrying your best friend is that you don’t have to be perfect. James and I built a life together and during the journey we have been caught off guard and called to find strength and push forward. We push each other forward.

Grayson:

Grayson Joshua came into our lives on his due date May 1^st, 2012. People who know me always say “of course your son was born on his due date.” I cannot help it, I absolutely love making a plan and having it work out exactly as I expect it to. I guess this is kind of ironic in the grand scheme of things, because Grayson has kept us on our toes every moment since he arrived just as planned on his due date. At 3 months old we discovered that Grayson was allergic to eggs. As a first time nursing mom this meant that Gray and I went egg free for 9 months (and believe me eggs are in freaking everything!). At 9 months Grayson was on the move, but Grayson didn’t crawl like most kids. He went everywhere via the “butt scoot”. If I had been smarter I would have taped a rag to his bottom and had him clean the floors for me on his way! When Grayson was 18 months old we started to notice that he was not developing speech the same as many of his similar aged peers. I was surprisingly un-hyper as a first-time-mom. I didn’t call the pediatrician in the middle of the night or freak out at the sign of a high fever. I trusted my intuitions. As Grayson approached his 2^nd birthday he starting communicating everything via high pitched screams. We became more and more certain that Gray was struggling to communicate with us. At Gray’s 2 year check-up our pediatrician agreed that there may be something going on and referred us to the Birth to 3 program with Walworth County. I’m going to reserve a lot of details of that year for a future blog….because the journey was long and bendy and I have a lot to say about it. The journey inevitably lead to Grayson receiving a diagnosis of Autism Spectrum Disorder in February just shy of his 3^rd birthday. The day of the diagnosis and the month following were some of the hardest days of my life. I think there should be a book called “Ok, your 2 year old has autism. Breath. And then do this…..” However, without that book in hand, we slowly found our footing and began to move forward. I have so much to say about this. And I have so much hope that sharing our experiences can help other people who are faced with similar struggles. A lot of my blog will be dedicated to talking about our life and some of the obstacles we face. And, while many of those obstacles may relate back to Gray’s diagnosis; we live our life every day with the goal of not letting autism define our family.

Grayson is silly and sarcastic and he is always thinking a few steps ahead of us. When I look at him I often think that I can actually see how quickly his brain is working. Gray is affectionate and thoughtful and he is very quick to make connections with people. Knowing Grayson and truly making a connection with him means that you have to depart your world and find a way to enter his world. This part is hard for a lot of people to understand. I guess I can start to explain it by saying that even Grayson doesn’t know why he needs things the way he needs them. The biggest favor you can do yourself is to stop asking “why” and just go along for the ride.

Rowan:

If you follow me on Facebook you’ve probably heard me say this before…but I truly believe that Rowan is the result of God knowing exactly what we needed. Rowan Thomas joined our family on March 3^rd, 2014. When Rowan was 6 months old we moved out of our condo, moved into a temporary condo for 6 weeks and then moved into our new house. He never missed a beat and rolled with the flow at every turn. Rowan is a lover and a snuggler. He loves to sing and dance and twirl. He is completely uncoordinated. He can be standing still on a flat service and will fall down out of nowhere. But, he picks himself up and twirls on. Rowan’s giggle starts in his belly. He is polite and kind and surprisingly nurturing for a 2 year old. He tells us “please” and “thank you very much”. Rowan blows us away every day with all that he has learned in his 2 short years of life. As a baby we had so many nicknames for rowan; Olaf (lover of warm hugs), The Gentle Giant, Row Row (thanks to Gray), Row, RT, etc. Recently, we’ve seen the “two” coming out of Rowan in strides and we have a few new nicknames that are probably better left unpublished! I can’t believe I am saying this (and it is probably just because my husband is out with both boys right now so I am writing in a moment of silence) but I love his new found sass!! I think worrying is part of the parenting gig, so I know I am not alone. But, I’d be lying if I said I didn’t worry about how all that we go through with Grayson will effect Row. I like that Rowan is asserting himself. He is finding a voice and sometimes he is telling us how he thinks it should be. Now, I’m not saying I’m going to let my boisterous 2 year old rule our world. However, I will say that I think it is important that he understands that he has a voice and a place in our family. Rowan struggles with the attention that Gray gets from his team of technicians and therapists. Oh how I wish I could explain to Row how lucky he is to just be a kid. I know this will be my job as Rowan’s mom; to help him understand Grayson’s journey. To teach him patience and kindness and tolerance and to give him the tools to teach this to others. As a parent it is tough to swallow that this year our 2 year old will pass our 4 year old in speech and social skills. We talk about “being prepared” for this. But, how the heck do you prepare for something like this? I cannot imagine my life without either one of my little guys. I already see how deep and strong the brother bond is between them and I am so excited to watch them grow and change.

 

So, why Pieces of Love? The answer is pretty simple; I have something to say. Well, I have a lot of somethings to say. Autism is often symbolized by puzzle pieces. There is a very famous quotation in the autism community that says “if you’ve met 1 person with autism; then you’ve only met 1 person with autism”. Every day of our life is so full of love, but our days are also filled with struggle, excitement, fear and lots of mistakes. We are doing the best we can and some days it feels like we are total falling short. I can think of a million moments over the past year that I would have loved to turn to a blog to explain a feeling or a situation that we encountered. And so I decided that it was time to create the forum.

I’m launching Pieces of Love in conjuncture with Autism Awareness month. My intent is for this blog to be about a lot of things…because our life is so much more than just autism. But, I will be honest and say that sometimes it feels like the autism seeps into all the pieces of our life. I guess I don’t know if that is right or normal, but it’s Sylfest normal. And right now, Sylfest normal is all I got.