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Saved by Suffering

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TEN YEARS !!! !!! !!! !!!! !!!! !!!!!!!!!!!!! !!!!!!!! !!!!!!!!  TEN YEARS of PET scans that are clean. TEN YEARS cancer free !!!!!!!!!!!!!!!!!!!!!!! Eleven years ago, in the midst of a 3 year battle with cancer, Bryan underwent surgery to remove a cancerous tumor from his scapula.  A tumor that was metastatic and considered a distant travel. A tumor that was heavily radiated 5 days a week for 8 weeks while chemo simultaneously circulated throughout his bloodstream. A tumor that was relentless and wouldn’t go away.  Less than a week out from surgery, I knew something was terribly wrong. Bryan refused to believe there was a problem. For 2 days, tears and cries and arguments filled our home. On the 3rd day, I gathered all the strength I could muster and physically forced Bryan into the car and through the doors at Highlands Oncology.  Dr. Travis took a picture and video of Bryan’s incision, emailed it to Dr. Nicholas at UAMS, and within the hour Bryan was scheduled for surgery at 8 the n
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"That Mom"

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What if someone asked you to answer the question "What is your favorite color?" w ithout using any speech and without moving your body? Unless you managed to find a really creative and innovative method, you would probably remain silent. What if your silence led that person to conclude that you didn't understand the question or you must not know your colors? What if that person then spent the next 2 months teaching you colors when you already knew them? What if there was no tangible evidence of what you know and what you don't know, so assumptions were made about your intellect, you are treated accordingly, and that information was used to plan your entire future? What if they we re dead wrong in their assumptions ? Imagine this - You have a student who has only been in self-contained classes during their entire education. No inclusion, no exposure to general education curriculum. No one has ever attempted to teach the student to read or perform basic math operation
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The Tether

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This son of mine. He is attached to me. We are connected at all times it seems. Tethered.  This tether. It’s his lifeline. I am his lifeline. Our tether has shortened dramatically since his world was turned upside down by COVID-19. If I go outside to check the mail or step in the garage to get something out of the car and I don’t first tell him what I’m doing, his anxiety goes from 1 to 10. He begins to pace. If I get stopped by a neighbor or if I pause too long for any reason, panic will start to creep in. He will say, “where are you” over and over until he sees me again. If I leave the house without him, he will say “mom be back in a little bit” on repeat, literally, for as long as I’m away. The tether had gotten fairly long prior to March 2020. He didn’t really bat an eye if I left the house for a little while in the evening or on the weekend. I could leave with peace of mind, knowing he wasn’t upset or anxious. Now, when I’m away from him I feel a constant tug pulling me home. I
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To the one who made me a mom...

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If you only knew how your smile affects me, how much of my heart you hold in your hand. Because of you, I truly understand what it means to love unconditionally. You opened my eyes to the vulnerable, and you have fueled me with a passion to stand with anyone who needs support, to fight for those unable to fight for themselves, to speak up for others who cannot or will not speak up for themselves. Because of you, I hope to make a difference. I watch how you touch lives around you, how you show and spread this pure, unbridled love. I witness the power of love breaking down walls, and I recognize it because I am a direct recipient of that love. Your joy is infectious…your laughter contagious...your smile is the most beautiful thing I have ever seen. It is impossible to be around you without smiling. I used to be a people-pleaser. I never wanted to upset anyone or hurt their feelings. To avoid any chance of conflict, I never admitted when I disagreed with someone. You have
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To Stim or Not to Stim...

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In an autistic person, "stimming" refers to repetitive behaviors such as: • finger-flicking and/or hand-flapping • rocking the body back and forth while sitting or standing • looking at something sideways and/or watching an object spin • opening and closing doors or flicking switches • listening to the same song or noise over and over • repetition of saying/singing the same words/songs/scripts over and over again Stimming is not a meaningless behavior. Listening to autistic self-advocates, over and over, they've said that being able to stim helps them focus, helps them navigate their environment, and helps them feel better overall. If a person is stimming, it's to serve an internal need - a need for sensory stimulation, a need for emotional self-regulation, a need to express anything from frustration to joy, a need to just feel better. And by fulfilling that need, stimming helps autistic people to navigate our neurotypical world. Alex stims. A lot. He often repeats wo
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Acceptance vs. Awareness

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It is estimated that 1 in 59 American children are affected by autism. 1 in 59 is a powerful soundbite. It’s a startling statistic. That’s why it’s so important - so critical - to remember, when we quote the statistic or talk about autism - that each of those “ones” in 59 is a full, whole, wonderful, valuable person, filled with gifts and potential and talent. Our son, Alex, is a son, brother, grandson, nephew, cousin and friend. Alex catches and reflects light like a prism. Alex lives big and loves hard. Alex laughs a deep, hearty laugh with every part of his being. Alex finds his way into the hearts of and changes every single person he touches for the better. Alex loves without reservation and is more authentically himself than any other person I’ve ever encountered. Alex has a beautiful, rich, complex – and yes, different kind of mind. Alex is fully deserving of all of the respect, dignity, rights, assumptions of competence, potential, and worth afforded to any other human being. I
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Rainbows, glitter and unicorns...

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I received a message today from a mom who has an autistic son the same age as Alex. Here’s part of what she said, “Please. Tell me what you do to make him so happy. How do you do it? How are you able to take him anywhere and everywhere and always have fun? I don’t get it. I feel like a failure. I’m a terrible mom. Seems we can hardly go anywhere. What do I do?” Let me first say a few things before I get to the heart of the matter. Alex IS a happy young man. There’s nothing I did to make him that way. Is it luck? A blessing? Genetics? Personality? All of the above? I don’t know. We are so incredibly fortunate to not have behavior struggles, but it isn’t because I did some magical “thing”. I’ve loved and cared for him the best way I’ve known how. That’s it. Just because he doesn’t struggle with aggressive or severe behavior doesn’t mean he doesn’t struggle. As a family, we have struggles. Just like every other family in the world. We selectively present the best versions of ourselves and
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