Last week our family visited the Mayo Clinic in hopes of learning more about Cooper. The appointment was a lot. I left feeling heartbroken and like I was back to square one on the grieving path. Over the week, as I told people about the appointment, I started hearing a theme. They blamed the Mayo for horrible service. They blamed the doctor for telling me certain things. They blamed the stressful walk in. They blamed this and they blamed that. I heard, ‘That appointment sounded awful. And, what a terrible…
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Often, children with autism will be recommended to use a weighted vest. My son Cooper is a sensory seeker and highly behavioral. Every therapist we’ve ever worked with has recommended we try to get him to wear some type of compression clothing. Some common reasons a teacher or therapist may recommend a weighted vest: To improve a child’s focus so they can pay attention to academic work in the classroom. To provide deep pressure stimulation that has a calming effect. To help decrease stereotypical behaviors. Increase Attention to Academic Work We…
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I had a rare hour of silence from autism today and I let myself get lost in old photographs. Oh, the cuteness of Cooper. He’s always been beautiful. Right from day one. So beautiful in fact that many people struggled to believe something was wrong. As I scrolled back through the years I felt so many emotions. Before Sawyer. Before the therapies. Before the diagnosis. Before we knew. Cooper’s beautiful smile in every picture. As the photos got older I started to recognize myself. There I was. Smiling holding Cooper.…
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To my first born Omar, I want to thank you. Thank you for the ways that you have held me together. For the ways that you have been able to carry a weight so heavy on some days that it should have dragged you down. But it didn’t. You smiled through. There were times I was so distraught and so impatient, that you didn’t need to forgive me for my loss of control and failure as your mom. But you did. From the first time you heard your brother needed…
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Today, self care is leaving work early to pick up Sawyer from preschool and waiting with him for five minutes while he examined a crack in the sidewalk. Which he was sure was a secret path to the middle of the earth. As I tried to rush him along he told me, ‘NO MAMA. I am doing science.’ So of course, I squatted down beside him, in the cold and drizzle, and looked for the center of the earth. Self care is getting home in the daylight and walking my…
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I often wonder why my son has autism. Why him? Why me? Why our family? There are nights where I’ll agonize over everything I did when I was pregnant. There are days when I’ll agonize over whether I should be doing more. Some days I’ll dwell. Some days I won’t. I call this the roller coaster of special needs parenting. And some days, I just want to read a beautiful poem like this one by Erma Bombeck. Enjoy. The Special Mother by Erma Bombeck Most women become mothers by accident,…
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Sadie has autism. She doesn’t make eye contact. She is in her own world and doesn’t notice anyone around her. She doesn’t speak. She’s not potty trained. She doesn’t know how to play “appropriately” with toys. She’s regressed. She may never be independent. She can’t sit still. She has sensory issues. Sadie has autism. The words coming from Sadie’s pediatric specialist that day made my stomach turn. She diagnosed her within minutes of meeting her. It was so obvious to her that Sadie has autism and it was something I…
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Hey friends. First, a huge thank you to everyone that emailed, commented and messaged me after my sad post a few nights ago. I read every word. Second, here is the video I know many of you have been waiting for. A few days ago we took our son Cooper for an appointment at the Mayo Clinic. This was the first of eight appointments over the next couple of months. It’s a big deal in our world. I finally found a doctor that will look at Cooper’s whole case….not just…
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Isolation. Special needs parenting is isolating for me. I know it’s my deal. I choose to give my daughter all I have. But I am also just doing what I know to do. I am admittedly exhausted. Burnt out even. People always ask, ‘How is Lexie doing?’ Sometimes, I really just wish they would ask how I am doing. With all of her multiple diagnoses and challenges in many ways she is doing better then her Mama. What do I do everyday? I cook because providing nutritious, delicious food is…
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I know a lot of friends are waiting to hear about our day at the Mayo Clinic. I have so much to say. And tomorrow I will do a video. But tonight I am sad. And I’m just going to be sad for a while. Autism is so unbelievably hard. Some part of me always believed that this was going to get better. I thought maybe, just maybe, someday, he’d snap out of it. He’d start talking. He’d tell me about his day. He’d call me mom. I thought someday…
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