Dear Addie,
We had a rough weekend (who am I kidding, week really). It was one of those weekends where we couldn’t catch our breath before moving on to the next realm of drama. Screaming, so much screaming. Screaming in the yard so loud it could be heard over dad sanding down a desk in the garage. Then there was the secret yogurt snack explosion all over the craft room, a clothing-optional moment on your swing set, the curiosity of a potpourri pouch busted open and sprinkled everywhere in the sheets and carpet. The list went on and on...and on some more. It’s pretty safe to say autism got the best of us, literally all of us. Clara and Gabe are the very best siblings and have crazy patience in my book, but even they were showing their frustration with certain situations and it broke my mama heart. Now don't get me wrong, it’s not lost on us that however much we seem to be affected, it surely pales in comparison to what you go through during these times yourself. There was just no pinpointing exactly what brought you this displeasure, but it was ever-present and we were all suffering the wrath.
It's in these times that I find a stark reminder that our challenges don't just disappear on our journeys, but change rather. And that's not just a "special needs" thing, even in the neurotypical world doors will close and new ones will open for opportunities in life, but it doesn't mean those doors you opened are free of challenges to work through.
A long time ago, when you were much smaller than the young lady you are today, I remember thinking in a very poetic way in my head - autism...we got this, just take my hand and we’ll do this together. Bring me your fears, worry, any confusion and I will help you, I will solve the problem. I didn’t know how, but I was the mom and I felt with that title came every ounce of confidence in a very dark and lonely journey that I could find whatever we were searching for.
You were so small and at the time the challenges seemed giant but manageable. I was mom after all.
The truth, I had no idea this is where we’d be today. I didn’t expected to feel so defeated at times.
It’s been years of research, trial & error, thickening of our skin, and on weekends like this it just all feels so heavy and unmanageable.
A very good friend of mine put a little bug in my ear (not literally Addie, that means she informed me of something) that a new book was coming out from the opposite perspective as the letters I write to you. It was the individuals with autism writing to their parents telling them how they really feel and felt about things in their life. This got my mind racing.
You were nonverbal for so long and have language now, but it's often only for expressing wants and needs towards food or repeating what we say. Would you one day tell me exactly what you thought of how I guided you through all this?
Having come off of this rough weekend and the impending release of that book swirling in my mind, your teacher had sent an innocent message about spirit week for the following day. It was "Your Favorite Book Character Dress Up Day!" (or something like that) and the teachers were all dressing like crayons to resemble the crayon book. They had indicated at the end of the day Monday that if our child wanted to dress in a solid color Tuesday to represent their favorite color crayon that would be great! But also not required and no pressure!
This is where my thought process goes nutty.
With the weekend struggle and my thoughts of what you would potentially say if you wrote a letter to me, I couldn't just send you in wearing your favorite color, oh no, you needed to be a crayon too! Because clearly me going above and beyond making you look like a crayon was going to change everything for the good from your mood to future letter. I told you the thought process was nutty, didn't I?!
Not wanting to go out to the store for anything and feeling lucky (we have an extensive craft room of supplies), one of my old shirts, a black sharpie, and some iron-on sparkle paper sealed the deal on a crayon-inspired shirt for the following day. And scene - we had a crayon shirt.
The best part of the nuttiness is that after I had finished it, I forgot you had an eye doctor appointment Tuesday (more on that later) so you might not even make it to school to be a crayon kid anyway. (Facepalm).
For me it was the crayon shirt, for others it might be folding a bed sheet perfectly or making delicious muffins, we all have our moments where we feel like nothing is going right or we feel like we are somehow failing and we just need to do or accomplish something good, anything at all to feel a little better. This is especially true for special needs parents who are constantly questioning themselves or the journey they are on. I'm almost confident that years from now you will write me a letter telling me you couldn't believe I dressed you up as a crayon to go to the eye doctor.
Here's the thing Ad, years ago I poetically thought if you just took my hand we'd do this together and I could make it alright for you, but today your hands are almost bigger than mine and it's you that seems so often to be taking my hand to lead me through this. A reminder that the title of “mom” doesn’t necessarily come with all the answers to our problems but patience, and an abundance of love rather.
I ran across an interesting quote that was re-shared by someone, so I don't know who originally said it, but it resonated deeply with me.
"I feel like I'm constantly worrying about the next part of my life without realizing that I'm right in the middle of what I used to look forward to..."
This weekend was rough, but there was a time I wished for so much of what you can do today.
Perhaps years from now when I look back at this challenging time I'll think "wow look how far we've come!" and maybe you'll have really actually liked your crayon shirt? Maybe.
Whether I'm taking yours, or your taking mine, hand in hand we got this. Even on the hard days.
Love you.
Mom
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