Dear Charlie, My son. What I would give to hear you call me Mum, but something stops you. There is a disconnect and those invisible walls go up around you. And just like that you are lost in your own world again and my heart breaks. Charlie you are such a happy kid, your giggle is infectious and you make everyone you meet smile. You would spend hours jumping on your bed if you could, you energy seems at times endless. I have never had a conversation with you but…
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I’ve been writing publicly about autism for five years now. Meaning, I’ve opened myself up to the world to educate and share our journey. And with that level of vulnerability comes support and scrutiny. At this point, there isn’t much that I haven’t heard. My son has been called ugly. I’ve been called fat. I’ve been told I should’ve aborted Cooper. He’s been called a retard. Dumb. Ugly. A mistake. A freak. He’s had death threats. Hell, so have I. I’ve been told that Cooper and I are stealing Medicaid…
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To my amazing little boys, Oh my beautiful boys. Where do I even begin? You both are loving, sweet, crazy, energetic, sensitive, hardworking, and special. I know you live a life that is harder than it should be. Every day when you wake up, you face challenges that I can’t even begin to understand. I’m sure if I understood everything you face between your sensory issues, lack of communication options, and constant need for routine, I would be impressed that you even make it out of bed some days to…
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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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