Author Archives: Stephen Mack

The IEP Process – Part 1

Posted on by Stephen Mack

Once again I ask for your compassion as I approach this blog about the Individualized Education Program (IEP) from a personal perspective.  Rather than drawing on scholarly or professional resources, I am going to offer some insight into how our …

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Dealing with Doctors

Posted on by Stephen Mack

Shortly after Isabella was born, she was transferred from her birth hospital to a larger medical center with a much more comprehensive special infant care unit.  It was at the new hospital that her Joubert Syndrome was diagnosed, and the …

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Planning for the Future

Posted on by Stephen Mack

One of the most important things that we can do for our children is to plan for their future in some way.  From opening a savings account at a young age, and teaching them to use credit responsibly, to stashing …

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A Day in the Life of…

Posted on by Stephen Mack

Raising a child with special needs is a much different journey than many of our friends and family have ever, or will ever, experience.  For that matter, our journey is much different than even we expected. First, I want you …

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The Long Journey Ahead – Joubert Syndrome

Posted on by Stephen Mack

Planning and preparing for the birth of a child is an immensely joyful – and extraordinarily frightening – process.  In the days, weeks, and months leading up to the “big day”, one realizes the amazing emotional, physical, social, and economic …

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The News – Finding Out My Daughter Has Joubert Syndrome

Posted on by Stephen Mack

There are beautiful moments that take your breath away; then there are moments that terrify you so much that you are stopped in the split second in which you find yourself.  In October 2004, we found ourselves curiously, wonderfully, and …

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Mom vs. Dad: How do we each parent?

Posted on by Stephen Mack

We all want to present a unified front for our children, right?  Mom and Dad, the immovable unit, undeterred partners, the undisputed leaders of the family.  Indeed, that is the goal.  Parenting is a beautiful, amazing, challenging endeavor, and often …

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Is This a Democracy or What? (How Much Autonomy is Too Much for Kids?)

Posted on by Stephen Mack

Well, I need to begin this blog post with a confession.  I have not quite yet entered the phase where my two children are seeking more independence, or autonomy, from my (our) parental oversight.  My son is still way too …

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The Pitfalls of Parental Favoritism

Posted on by Stephen Mack

I have found myself in this situation countless times, both as a parent and when I was a younger child, too.  One can almost sense when a child prefers to be around, or engage with, one of the parents more …

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Sugar: The Good and The Bad

Posted on by Stephen Mack

Everyone loves a cookie now and then, right?  Ok, ok…for me it seems to be a bit more about the “now” rather than the “then”.  It’s about time I get moving on those New Year’s resolutions!  But, seriously, most experts …

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