Life in pieces…

untitledPeople 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.


10 thoughts on “Life in pieces…

  1. Candy says:

    I appreciate the glimpse into your beautiful life. With the lives we lead we don’t get nearly enough time to talk, laugh, whine, or directly support one another so I’m grateful to have this forum where i can keep up on Grays progress, Rows funny stories, and generally feel as connected as I can to one of my favorite families. Keep the blogs coming mamma!


  2. Judith Meyer says:

    Your blog is very enlightening to me. As an former teacher, I never worked with any children who had been diagnosed with autism. It sounds like you and Jamie are doing all the right things to help Grayson. So proud of both of you.


  3. Roxanne says:

    You and Jamie are amazing, your strength and patience are what I admire in both of you. I am excited to read more and I am thankful that you are willing to share this.


  4. Angie Permanian says:

    So very proud of you. What an amazing thing u are doing for your family and such a gift of information and knowledge to so many others..Love you Jess.😍😚


  5. Julie Bush says:

    I have always thought you were so special and kind and such a wonderful mother, now I know what an incredibly special mother you are. This was beautifully written.


  6. Brenda says:

    When you speak the truth of your life you give everyone else permission to speak theirs. Life is a messy, beautiful journey. Thanks for sharing yours.


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