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Back to School Days: Getting Your Child’s Special Needs Met with IEP and 504 Plans (2 of 2)

This blog is the second in our "Back to School Days" series and is a continuation of our discussion about effective communication with teachers and school staff. This week we'll look at IEP and 504 Plans which are federal regulations put in place to guarantee an education for children with special needs (which includes medical issues). IEP and 504 Plans are two separate plans with distinct requirements although there can be some overlap between the two. Each plan creates a legal document … [Read More...]

Recent Blogs

bumps ahead

Avoiding the Bumps in the Road: Essential Tools and Tips for Parenting Children with Health Issues

Parenting isn’t for the faint-hearted! Raising kids throughout their developmental stages is tricky enough; parents of kids with health issues have to face additional challenges along the way. When we know where the bumps and potholes are, it becomes a lot easier to avoid them! So let’s take a look at some of the challenges […]

Unexpected Blessings

The Unexpected Road to Unexpected Blessings

There is no way to prepare yourself for hearing the words: “I am sorry but your child has cystic fibrosis.” In our case, we had never heard of CF; no family history, no warning, no reason to suspect anything was wrong. Until we had an ultrasound two weeks before my due date and our ob-gyn […]

School and 504 Plans

Give Your Child’s 504 Plan a Checkup

By Lisa C. Greene It’s that time again! It’s only three weeks into summer break and I am already thinking ahead about the next school year. I need to plan ahead because both of my children, now teenagers, have special medical needs. In many ways it was easier when they were in elementary school. There […]

believe

Believing in New Possibilities for the Future

By Lisa C. Greene Today, my daughter said a phrase she uses a lot: “When I’m a doctor someday…” and for the first time, ever, my heart didn’t falter at wondering if she ever would be. Today, for the first time, I have a realistic hope for my children’s futures as doctors, engineers, parents and […]

dreams

Finally Daring to Dream

by Lisa C. Greene What is it like to experience that moment of hope realized? When, after holding your breath for what seems like years, your dreams come true? Today, Vertex announced that they had good results with a medication that may possibly save both of my children’s lives and, at the very least, give […]

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Panic or Anticipation: Are You Enjoying the Summer?

Want to be a happy mama and papa? Want to know the key to having a great summer with your kids? Raise children who are creative. Of course, creativity has to be combined with self-discipline. If you have a creative child who has no self-discipline, then you have raised “the child from hell.” After all, […]

support

Part 1 of 2: Caring, Connecting and Compassion: The Do’s and Don’ts for Giving and Receiving Support During Hard Times

A mom shares her frustration:  “I’m exhausted, overwhelmed, and wiped out. My friends try to help but they just don’t understand. When I talk about my child’s illness, it makes them uncomfortable. Then I feel bad for burdening them. I feel so alone.” What is support? Support can mean different things to different people. Certain aspects of our […]

support 2

Part 2 of 2: Caring, Connecting and Compassion: Do’s and Don’ts for Giving and Receiving Support During Hard Times

In our last blog of this two part series, we looked at what support is and isn’t. Here are the do’s and don’ts for giving and receiving support. Tips for giving support: Before giving support, ask if the other person wants it. “Do you feel like talking about this now?” Of course if they say […]

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How Do I Get Off This Ride?! Riding the Emotional Rollercoaster of Your Child’s Diagnosis

Up and down, around and around, out of control and going wayyy too fast. That’s how some parents describe how they felt when swirling around in the medical maelstrom that follows a child’s diagnosis of cystic fibrosis or another serious medical issue. That’s how I felt when my son was born via caesarian section and […]

teen and dad

Is Your Teen Giving Up? How to Empower Hope in Teens- Part 1 of 4

I talked with a dad who is concerned about his fifteen-year-old daughter. He is afraid that she is giving up. She has cystic fibrosis (CF) and it’s taking a toll on her mentally and emotionally. She’s been hospitalized a lot and is not doing well at school. He feels like she’s just waiting to die […]