Category Archives: Ask the Parents

How to Hold it Together When the World Falls Apart

Hi you guys! This is basically my week again…only different surgery on the stomach…I’ll update you later…   ****************************************************************************     I get tired–the kind of tired that makes your bones ache. Sometimes, I get grumpy too. Hey, don’t we all? In this ever-winding road of special needs parenting, I find myself often in a…

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Antibiotics: How Do YOU Roll?

Need a little help here, PLEASE: My Big Little Man (who is smaller by 5 lbs now than My Little Man) got that back-to-school cold going around. For us, that means an imminent sinus infection as his compressed sinus cavities — a trait common to those with Down syndrome — makes him prone to this…

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Testing….

Hi there! Remember me? (don’t answer that…I’m beginning to feel a foreigner in my own land!)   So, here’s the current score. School District: 5, Jack: 3. It’s looking rough out there. His IEP was completed a few weeks ago. Because he turned 6, he has to be “transitioned” from the developmental delay label to…

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Deep Breaths

How are YOU? I hate the beginning of school. Invariably, it brings an onslaught of paperwork, sniffles, and children who are grumpy. It takes a good month for Jack to pull it together. So what do we do? Run away? ┬áHide? I don’t know what the answer is. I know that I am struggling. He…

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The Bubble Bursts…

Sometimes, I lose my words. Like someone popped my beautiful bubble that I worked so hard to get right. Or I feel like the sky is closing in on me. Actually, I feel like I’m the kid with the black cloud that only rains on me. (Pity party, table for 1?) So many times, on…

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How to Save a Life

“And I would have stayed up with you all night…” (The Fray) Funny…my nights are filled with constant coughing. Wet washcloths to the forehead. Pulse oximetry. Puking of mucus. Pedialyte. Medication. Pillows.     My little dude is not doing so hot. His lungs aren’t doing their job very well. There’s Lysol, medications, inhalers, nebulizers,…

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Special Schools

This week has been one of those weeks where my emotions have gone from elation to fear to peace—and then back again! It is time for Jack to head to school. In the past, I was determined that the only way he was going to do school was with me by his side (meaning: home…

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Weddings (and other such events)

Tomorrow my brother is getting married. In a quiet, small gathering. On a boat. At Disney World.   Now, while most people think this sounds romantic and lovely, I am a nervous wreck. My brother loves my son no matter what; however, if he decides to melt down or scream or narrate the entire event,…

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The Working Special Needs Mom…

So, how does one do it? Work and be Mom of the Medically Fragile? I need to know. I have a job interview. For a real, big girl job. In my field. At a large hospital. In a position that I, a few years ago, could have only dreamed about. I don’t really want to…

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Message for ALL Mom’s.. LOVE your kids, as if they were dying..

My day had started like any other, I was up at 5 packing lunches and backpacks, while trying to gulp down some coffee. I had an appointment at the office later, so I spent a few minutes standing in front of my closet perplexed and sighing. I looked in the mirror, briefly noting the major…

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