Thursday, March 8, 2012

Some of my favorites

If I sat back to think about how many hours I have logged doing research about my extra-special girl and her challenges, I might think I had been to another 4 years of college.  Except, in this case, there is no degree to be achieved.  How many zeroes would be at the end of that log of hours?  Too many.  I call Pintrest the black hole of pretty pictures - one thing leads to another that leads to another that leads to another.  My research has been a lot like that, too.  I start at one source which will lead me to another, etc. It seems to never end.  Yet, along the way, I have found a few gems that I return to time and again.

I've mentioned this many times - navigating the complex maze of the educational system for your extra-special child is, at best, confusing and at worst, completely defeating.  I'm not an attorney, nor do I want to be one, but a general knowledge of special education law has been really helpful.  That's where the people at Wrightslaw come in.  This book has been a huge help to me:

Written explicitly for parents, it is a great guide to all those pesky laws that seem more confusing than deciphering texting abbreviations from your teen.

They have also written another invaluable guide:
The most important thing I learned from this book from the first time I opened the page was to create and keep a paper trail.  If that was all it taught you, it would be worth it, but it covers so much more and definitely keeping my emotions in check when working with the school has been much more beneficial to my daughter.  It is easy to dismiss an emotional parent as, well, just emotional.  It is much harder to dismiss a parent who is prepared and professional.

I continue to look for books that will guide me in helping S, my older garden-variety special, girl to navigate her own emotions as the one who has the extra-special sibling.  I recently purchased this book for her:
Written in a series of questions answered by teens ranging in age from 12-19, this book shares that, if nothing else, all of the emotions that S has felt/is feeling/will feel are normal and understandable.  She is not alone and I think that might be the best thing she gets from this book.  Most of the siblings have more severe challenges than K, so it's not 100% relatable to S, but that, too, helps to keep some perspective on her own situation.

I am still looking for some good guidance on how to fully explain to S, in ways that she can understand completely, what the specific challenges are for K.  I think S will benefit from having a more "clinical" explanation than just "her brain is different from your brain."  I think I can do better than that, but I'm really hoping I can find someone who has walked that walk and might have some good ideas.

My favorite book for me - the one that reminds me that my emotions are normal and understandable is this one:

I recently wrote this review on Amazon and for the sake of my sanity and lack of general creativity, I figured I would just copy it here rather than try to come up with something new.  

I don't remember who recommended this book to me, but I wish I did so I could thank them properly. In a world where we are all measured by our stats: grades, SAT scores, university diplomas, job, salary, etc., Gina Gallagher and Patricia Konjoian remind us that perfection is highly overrated. As I read their book, I felt like I had found kindred spirits. My own daughter does not have the same challenges as theirs, but my journey as a mom has been remarkably similar. Sometimes, it can feel as if you are on the journey alone, but the Shut Up Sisters remind you that you are not.

The book really recounts their own experiences raising kids with special needs, but along the way, nuggets of professional insight are provided. You will definitely cry while reading this book, but you'll also laugh out loud and be racing to share the excerpts with friends. You will finish the book feeling hopeful and more appreciative of all the imperfections around you - including your own. This may be the best part of the book - being reminded that imperfection really is just perfect.

Don't be deceived by the title! Although the title might imply that the Shut Up Sisters would like to tell off the parents of every child who is seemingly "perfect," nothing could be farther from the point. It's really about embracing all the wonderful qualities of your imperfect child and educating others so that you and your child will not have to live on the fringes of the "perfect" kids.

Many thanks and kudos to the Shut Up Sisters for opening their lives and the lives of their children to help other parents of special needs children feel comfortable, too. These are girls you would want to hang out with - not just Gina & Patty, but their daughters, too.

I promise to gather up a list of my favorite websites.  I wanted to start with books, in part because I was honored to be a guest blogger at this week.  I am genuinely grateful to the Shut Up Sisters for their humor, their wit, and their humility and for allowing my voice to be heard on their website and blog.

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