Tag - special needs

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A Bittersweet Anniversary and Post Traumatic Stress
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Nothing Says Sad Like A Soggy Sandwich—First Day Of Kindergarten
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The Stupid Things People Say To Special Needs Parents
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The Beginning—This Is Not The Life We Ordered
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I’m Lucky To Be A Stay At Home Mom

A Bittersweet Anniversary and Post Traumatic Stress

  This story was originally published in 2010. Avery continues to do well on her anti-seizure meds and life is good. 🙂 It was an ordinary day. If you consider 40 degrees Celsius in May normal. Avery and I dropped big brother at school and went through our day like any other. It was exactly one year since her first seizure—a severe and nearly fatal episode. I never seen a war, but yet I have Soldiers Heart nonetheless. At least that’s what they used to call it. Today we know it as Post Traumatic Stress Disorder. PTSD usually develops as a result of a “terribly frightening, highly unsafe or life-threatening experience.” It doesn’t make a difference whose life was threatened – yours or the life of someone you love. People who experience post traumatic stress tend to avoid places, people, or things that remind them of the event. But what happens when you live WITH the person who reminds you of the trauma IN the place where it happened? I tell you what happens; you avoid thinking about that event, ever. If you find yourself feeling any emotions related to said event, you crack a joke, call a friend or[…]

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Nothing Says Sad Like A Soggy Sandwich—First Day Of Kindergarten

Parenting a child with special needs is challenging in ways I never expected. The love I feel for both my children is equal, but the fear and uncertainty around my daughter is more gut wrenching and harder to shake. I’m sure friends and family had a betting pool about the state I’d be in today. Sorry to disappoint those who put their money on Train Wreck. Turns out, this morning I was merely a titch tender.  What these gamblers didn’t know was I got most of my tears out yesterday.  What set me off was making lunches for the kids last night. As I quartered Avery’s grapes, it hit me that I wouldn’t be there to help her. I boo-hooed as I cut off her sandwich crusts and sobbed when I noticed tears had fallen on her bread. During this melt down my poor husband was doing the nervous eye dart, back and forth as if to say, “My wife has lost it. What do I do now? Anyone. Anyone??” Fortunately an intervention wasn’t necessary. By the time I’d moved on to filling the water bottles, I’d pulled it together. But then later, I read this message on Twitter: Cue more[…]

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The Stupid Things People Say To Special Needs Parents

I love the power of the written word—stringing together letters that weave the fabric stories of my family. Words can be beautiful when crafted by someone with a kind heart. Words can soothe when spoken by a gentle soul. But, words wielded by the ignorant can leave behind a painful mark. Last week my daughter happily drew lines on a chalkboard in our doctor’s waiting room. The older woman sitting beside me asked how old my girl is. When I told her she said, “Awfully small for three isn’t she?” The response in my head was, “You’re awfully stupid for 60, aren’t you?” What I actually said was, “Yup. She’s our little girl.” As my daughter drew, she and I communicated using signs. The woman leaned over and asked, “Does she talk?” I took a breath and then I explained that she has a speech delay, but is a proficient signer. Without missing a beat this woman told me her sister worked at a school with kids more “far gone” than my child. Far gone? Are you kidding me? She went on about how important it is to catch “these kids” early if they’re going to have any chance at all.[…]

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The Beginning—This Is Not The Life We Ordered

My husband gave me a tacky beer cozy—you know those foamy cups that insulate your bottle? “This is not the life I ordered!” was written across it in neon letters. It was a silly gag gift for an occasion I can no longer recall. When our daughter was diagnosed with the genetic disorder that would change all of our lives, I dragged out the beer cozy from a box in the basement and announced that I would be using it to hold all future beverages.  The Beginning: When our daughter was four months old we had concerns. This baby, our second child, wasn’t gaining weight, she refused to nurse or drink from a bottle, and she wasn’t achieving the milestones associated with her age. By six months we were worried. By seven months we were frantic. Our family doctor (the only medical professional who actually listened to us), was at a loss. She ordered the necessary genetic testing, and in the meantime referred us to a pediatrician who I took Avery to see several times. On the last visit, near tears, I begged him to take our concerns seriously. My husband and I knew something wasn’t right. His response to my plea for[…]

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I’m Lucky To Be A Stay At Home Mom

If you’d told me that one day I’d leave my job to be a stay at home mom, I never would have believed it. I went to school to be a teacher dammit. I’ve always wanted to be a teacher. As if I’d give that up… Of course I love my kids and I want to be with them. But not like, all the time. I’d always planned to parent AND work—in perfect balance. Because that’s totally doable, right? I thoroughly enjoyed mat leaves with both my babies, but knowing I’d soon be back at work made it easier to enjoy every moment. The light at the end of the tunnel shone bright. Mid-way through my mat leave with my second child, daycare was set up, schedules were organized and I was ready to go back to the classroom I loved, to a job I was really good at, blissfully unaware that things were about to change. At 8 months, our daughter became very ill and was hospitalized. Avery was diagnosed with a rare (as in one-of-a-kind-where-in-the-hell-did-this-come-from-holy-shit) genetic condition. Doctors didn’t have much information so we had no idea what to expect. The geneticist painted a grim picture, tossing out gems like,[…]

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