I recently came across a video that emotionally touched me on so many levels and it made me realize that we all face challenges. Some are harder than others and their difficulty varies with each individual. For the most part, we all face them. In this video, a mother of an autistic child states it’s not okay that we are dealt the cards we have been given- and I totally agree. In saying this, it strengthens my drive, my hope and my mission. Now, I will be honest with you… there are a few days- (okay a lot of days) – that I feel completely and utterly defeated. I wonder exactly the same as this mother does, and then something in me starts conjuring thoughts, goals and what-ifs in me.
I’ve had my son on the GF/CF (gluten free and casein free) diet for years now. We also work with a truly wonderful holistic physician in our area. Improvements have been made, but I know there’s so much more I can do. We’ve focused on the Feingold diet this year and discovered even more about my son’s overall health. There’s not a day that goes by that I am not learning and refining our autism world. Our biggest hurdle is sounds! He’s very sensitive to sounds and my home has become like a ghost town with a grungy old sagebrush blowing quietly in the breeze. We have donned ear plugs and headsets. Captions and subtitles adorn each movie and video we turn on. Alexa even whispers in quiet mode! I’m sure most autistic moms reading this will understand that you can do everything humanly possible to help with the daily on-goings in the autism life, but there are some days a meltdown happens. And after all these years, I thought I would be able to predict a meltdown coming… nope! Sometimes they just happen. It could be when you have company over, or a ring from a cell phone, maybe even the honk from a car outside. But you do the very best you can in this type of situation.
Now, for me -I can’t say this for anyone else, I get really down every single time this happens. You might ask, Why? Simply because I want so desperately to heal and recover my autistic son. I want more than anything in this world to share a life with him, to share a movie with him, to play a video game with him, to travel places together. All to watch every spectacular smile appear on his beautiful face. I would absolutely LOVE to hear him tell me his dreams or anything that he’s excited about!
I only get glimpses of him when it’s a good day. Occasionally I get little notes from him about what he would like to have for dinner. I sit and quietly observe him while he’s busy drawing out national flags or logos in systematic detail. I can actually see him, brief as it maybe, a dark eyed glance as he shares the pictures with me. Those are moments I enjoy and yes, I am greedy because I want more- more interaction, more loving, curious looks from him and more of his contagiously happy smiles.
In writing this today and watching that video has done a number of things for me: One: I am not alone. Two: Never give up hope, and Three: Cherish what we have. – Always.
I have a dear friend that’s repeatedly asked for my son and I to participate in a wonderful theater program here in my hometown. If you have taken note on anything I have written above, then, you will clearly understand why my son and I haven’t yet. We are, simply put, just not there, but maybe someday.
I believe sometimes it’s kind of hard for others to understand if their children or teens are doing it, then why can’t yours? And I truly know they mean well and perhaps if we share our own stories (like the mother I had mentioned from the video), we can all learn to have more compassion and new perspectives.
I’m going to add the link here if you want to check out another amazing mother warrior – I Will Sit With You In The Dark
From my family to yours we hope you have an amazing holiday and an epic New Year!
Massive love and hugs!