For the past three years, on World Autism Day, I have shared a little about our son Max, and our life on the spectrum.
Max is now six years old. He still loves balloons, music, his family, animals, and our cat Dash. And I still melt every time he smiles.
A month ago, when I started thinking about this year’s update, I was planning a very different type of post.
I, of course, planned tell you all the amazing things that Super Max has been up to.
Like going to school four days a week and staying for the preschool enrichment class, which means he gets to bring a lunch to school like his big sister, Mia.
Or how we went to Disney. On an airplane. And how we didn’t know even 5 minutes before our flight time if Max would board…but we were there to try.
And how not only did he fly that day, but we had the most pinch-me-worthy week of Disney magic in the days that followed.
So magical, that on the flight home I was already researching our next trip to basically anywhere…because we finally could.
A little over a month ago, we were transitioning back to real life after an amazing vacation.
And now, my family, like yours, is staying home, waiting for this Covid-19 Pandemic to play out. I don’t even know what real life is anymore…and the post I had planned is going to have to wait.
These days I’m home, trying to play teacher to both of my kids, while also trying to wear the hats of the 4 therapists that make up such a big part of Max’s success.
I am trying to keep a sense of calm, order, and normalcy for a child who thrives on routine…no matter how I am feeling inside or how completely abnormal our situation is.
I am trying to facilitate zoom therapy sessions for a kiddo who has major attention and focusing issues. I’m often left chatting with the therapists as Max runs loose in the house (yay for adult interaction, right?).
I am trying to explain to my son why he can’t play on the playground, or play with his neighborhood friends…which, I know, is heartbreaking for any parent. But when your child, at six years old, is finally asking to play and he can’t…it’s a special kind of gut punch.
I am trying hard not to freak out about the lack of a transition plan for kindergarten because all of the scheduled observations and evaluations have been canceled and I haven’t been notified by anyone yet as to what the plan might be…or the thought of Max not returning to the preschool he loves at all this year.
I am trying not to let the word regression rule my thoughts…because I still have PTSD from Max’s first regression when he was one and probably always will.
I am trying.
These are hard days, friends.
But as foreign as this whole situation is, there are parts of it that feel very familiar.
We have been here.
Social distancing and isolation are very real in the special needs community, and when Max was first diagnosed, it was our reality.
I quit my job to stay home with Max.
We didn’t go out to eat.
We didn’t travel.
Leaving the house for even the simplest task or errand gave me anxiety.
There were no activities to miss because we didn’t participate in any.
We know this life well.
And while we worked so hard to emerge from those early days, this place…it’s not so bad to be back.
In one of my earlier Autism Updates, I talked about how, in our family, we celebrate everything, big and small.
I know our experience with Autism is uniquely our own, that our situation might not compare to those of another family’s. But I can tell you this, in our life on the spectrum, nothing goes uncelebrated.
We had a choice back then, as we do now. We could focus on all the things we felt we were missing out on, or we could focus on what was happening right on front of us. And find the joy and beauty.
Despite how far we have come in this journey, our life still revolves around simple moments of happiness…tiny wins.
So even in our current situation, there is so much to be thankful for.
For me, it’s the extra time my children have together every day, as Max adores his sister.
Or getting Max to sit long enough to finish a book with me, something I took for granted with my daughter, but has been a struggle all of Max’s life.
Oh – and all the talking. The non-stop-all-day-Mommy-look-at-this-Mommy-look-at-that-talking. My head might be spinning by bedtime, but I will never take these words for granted.
And guys, we are healthy.
The days are long, but all I have ever wanted with both of my kids is more time. And I know I will never get this time back, even though it’s hard.
So we will be here, soaking up the sunshine, the extra cuddles, the silliness at the dinner table, the noise…how on earth do two kids make so much noise? Amongst all the struggles, we will be looking for the small moments, the little victories, and taking it day by day (or, more likely, hour by hour).
I will also tell you this, when you live your life celebrating the smallest wins, the big ones are even sweeter.
I can say for certain that when all of this is over, no matter what your new normal looks like, you will never take it for granted again.
And neither will we. Autism has taught us that, and we couldn’t be more grateful for the lesson.
April is Autism Awareness month, so feel free to share. To read more of our story, check out these post from the past three years:
Our Autism Story – 2018 Update
Our Autism Story – 2019 Update
I once again thank you for allowing me to interrupt this space and share what’s in my heart. You all have been nothing but supportive over the years and I am so grateful.
Much love to you, friends.
Amanda Vahey says
Boy this was amazing to read. We have very similar stories, but my little man is 3. Seeing all of this brings tears to my eyes as I am shaking my head in agreement. Thank you for sharing your story. It allows mama’s to know that they’re not “alone” in this beautiful, special world. I love seeing the pictures. Brings pure joy to my heart and we can’t wait to take our little guy and his sister to Disney next fall! XO
You are so not alone ❤️. I can’t wait for to to experience that magic, too. Hugs, momma.
Lisa Erney says
I was blessed to find your website about three days ago… our family, at the advice of a wonderful nutritional therapist we found, recommended us to continue our gluten-free; added sugar-free organic diets– however, she also recommended limited or dairy-free if possible. Our lovely future daughter-in-law follows the FODMAP plan as well, so it is also very important to us to support her, too! I was so excited to come across your site– WOW!!! What amazing recipes and I LOVE your positiveness!
Then, tonight, I came across your story about your son and your magnificent journey– especially how you are currently maneuvering the challenges of Covid. I greatly appreciate your circumstance as I teach Special Education– some of my K-4 students who suffer from the same things you are describing. I love my students and I love my families, and my heart goes out to you as well… I can only hope that I will be able to meet with my students face-to-face this coming Fall as they too, are at great risk of regression, and I miss them terribly! I wish you the best as you continue down this path of uncertainty. Thank you for being comfortable sharing your story and for all of the time, effort, and energy it takes to pull this beautiful site together! All positive thoughts coming your way!
Lisa…sorry I am so late on this comment, but it really means so much to me that you took the time to write such kind words. And thank you for all you do for your kiddos at school. I wish you all the best in this new school year – stay safe and healthy! ❤️😊
Wow! This was amazing to read! I love your positivity and honesty. Thank you for sharing your beautiful words!
Awww…thank you, Mrs. Halteman! That means a lot!
You are amazing. You bring such light to our lives through your sharing of normalcy and recipes. You are part of our normal! Sending love and hugs and light to you. Grateful for this community you’ve built!
Jill schardt says
Love your updates. I remember those days well. Our son is now almost 11.
Keep sharing, it’s always helpful to hear we are not alone.
We are moving to Devon, PA in June to send our son to a private school in Villanova. Are you in the Philly area?
Stay safe and sane!
We are! My husband works in Villanova! What school?
Jill Schardt says
We’re sending him to hill top prep in the fall 5th grade.
Desiree Crutchfield says
I loved reading your update! You are an inspiration to others carrying this some kind of load. You are so correct, we will never get this time back so enjoy the little things! Thank you
Thanks so much, Desiree! Sending you love!
💙 You’re a strong, amazing family, thank you for sharing your world and how this craziness on the outside has been changing the inside of yours. It puts it all into perspective. 💙
Thank you, Diana…your kind words mean so much. <3
What an amazing update and your positive outlook perked me up. Thank you for feeding me and now also inspiring me to always look on the positive side of lives moments big or small.