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.