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Finding Myself Through Self Care

Finding Myself Through Self Care

SELF CARE.  Those two words haunt me everywhere I go.  My therapist, my doctor, my friends, everyone talks about self-care, but does anyone really do it?  What is it?  So, taking a half hour to read a book or chat with a friend or go for a walk is really

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Holiday Travel With a Child With Complex Needs

Holiday Travel With a Child With Complex Needs Travelling around the holidays is stressful for any family. But many families would delight to simply contend with the challenges of packing, entertaining busy little minds and making it to the airport on time. Families whose children have complex medical needs have

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I’m Thankful For…

I’m Thankful For… I often feel that I am in fight mode. Advocating for my son is one of my most important jobs. I feel that I am constantly working to put out some sort of fire, straighten out a complication, or trying to prevent something from going off course.

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Finding a PCA

Finding a PCA I was absolutely crushed when our personal care attendant (PCA) of 2+ years informed me that she would no longer be able to work with my son. We FINALLY had things rolling along smoothly (might seem full of potholes to others, but to us life was moving

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How to Obtain a Disability Parking Permit

How to Obtain a Disability Parking Permit My son Isaac received his first wheelchair around the age of 3. It was becoming more difficult to carry him everywhere and limited his independence and need for adventure. We were able to transport his manual wheelchair in our SUV without much difficulty.

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Transition: Pediatric to Adult Care

Transition: Pediatric to Adult Care When your child gets to “that age” where you and your physician, PA, clinic nurse, and child start talking about transitioning from pediatric care to adult care, there are several things to talk about and decisions to make. Our daughter Chloe is now 24, and

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Being THAT Mom

Being THAT Mom I can remember being worried about asking questions. I should know what all these acronyms mean right? Everyone else at the table seems to understand. I don’t want to ask “What does that mean?”. They will assume I’m questioning their competency. Maybe they will question my competency.

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Practical Self Care for Intense Times

Practical Self-Care for Intense Times Parenthood is never a walk in the park. For those of us parenting children with special needs it’s more like a marathon. In the jungle. At night. We hit the wall often and hard. From the first time I found myself exhausted beyond recognition I’ve

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I am a Champion Form Filler-Outer

I AM A CHAMPION FORM FILLER-OUTER I have been filling out forms for our child with special health care needs for 24 years and I am very good at it. Here are a few tips and tricks that I have learned: 1. Start Early. There is always a deadline and

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School Communication

I often find myself wondering what my child actually does all day at school. Although I have his IEP right in front of me, it says very little about his daily interactions, activities, mood, etc. Charlie is now in the 2nd grade and he spends time in both the general

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