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The Chaos that is Special Needs Parenting

Last week I set out to take my kids on 5 appointments. You know how that is, it’s summer and we have to cram in all the time at doctors and therapies before school starts because our kids need all the time in the classroom they can get.

There are some follow-up tests and monitoring and that mostly sucks because what kid wants to fill their summer with appointments and tests? I’ve been belaboring the fact that this is how it is in the summer. This summer isn’t any different than last or the one before that or the one where we were gearing up for Quinnlin’s fall kidney transplant. Yet it still surprises me. Why is that? Do I forget all school year how stressful summers can be? Let’s just say  I can completely relate to what Rob wrote on Monday.

I’ve been more silent on here and my personal blog and I was just thinking it was burnout from being online, writing, or some kind of writer’s block. It still may be, but as I was faxing a form to another specialist yesterday I realized my burnout is from all of the extra things we are cramming into our schedule right now.

Which is really ironic because I’ll be moderating a panel at BlogHer’s HealthMinder Day. The topic is close to my heart because I consider myself a good advocate for me and what I need. I think in the shuffle that is summer I’m losing the time and energy to be the advocate I need.

On the outside I appear calm as can be but there’s an inner turmoil. The chaos today is figuring out what is at the bottom of the chaos. Regular stress? Or changes I should make online, or with Support for Special The only answer I can give myself today is that time will tell.

That is a mantra I know intimately.


Be sure to check out Champ’s recent adventure to visit Ireland and a special little girl and family there! Thanks Rianna for the great care you gave him! We’re working with Build-A-Bear Workshop to visit with families around the world who are touched by special needs. Join us!


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  1. July 11, 2012 |