365 Days a Year

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

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

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

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

JS

One thought on “365 Days a Year

  1. Julie says:

    You continue to amaze me. Being a mother is a rewarding experience. Especially when you do it as well as you do. Blessings to you and your family. I wish I could write like you. But that’s all I have. But it is heart felt

    Like

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