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It was hard to say good-bye to Paperkids.  But the show must go on and so this blog is the best way I can make that happen.

This whole venture started in May 2010, when my nine year old daughter began to spell out on a keyboard for the very first time.  Maybe that seems like no big deal, but Emma has autism and has been nonverbal since she was two, when her little bit of language fell away.  We still don’t know where this autism came from, but I’ve had speculations on everything from vaccines, to a fall that she had from her crib as a baby, to maybe I didn’t play with her enough.  It goes on and on.  Not sure if we’ll ever have the answer.  I only know that what I wanted more than anything else was to know her thoughts, her feelings and little things like her favorite color.  Labeled with severe autism and mental retardation, we weren’t sure how much she understood.  That’s why our whole world shifted on that Saturday morning when she began to spell out in full sentences giving us answers that we longed to know for so many years.  And we were shocked to discover that she could not only spell, but type out amazing poetry with the help of  IPM (informative pointing method) and FC (facilitated communication)!   I couldn’t bottle up my  joy or my newfound discoveries.  That was when Paperkids was started –  named and inspired by Emma.  What a journey!  On it’s 40th post, Emma decided that she didn’t want to do Paperkids anymore, but was fine with me starting a family blog.  She was ready to move on, but what about me?  But where to begin!?

When anyone asks, I’m just a mom.  People say, “just a mom”, but it’s really quite a job, isn’t it?  I’ve always wanted to be a mom and when I met Jared, I just knew that he could be that partner in life with me.  Sometimes we seem a perfect match, sometimes not so much.  We both had the same desire for a family, love of art, and feelings of  failure.  We both wanted to be actors once upon a time.  Now we just want a normal life with the white picket fence and the whole thing.  Not sure I’d know how to do that if I tried.   But more than anything, we want our kids to be happy and to thrive.

My son Hayden was born four years after Emma.  There was no doubt that he just had to be.  I wanted Emma to have a sibling so bad.  And what a joy he’s been!  He’s now five years old and a mess of curls and smiles.  And just like Emma, he too has autism.   His diagnosis hit me like a truck.  I first saw signs at 13 months when he started to flap his hands and lost some words.  I wasn’t expecting it and it’s hard to explain the devastation that it brought that first year.  But we were equipped with a little more knowledge this time around and more services at an earlier age.  Hayden’s been working hard in ABA therapy since he was 18 months old.  Luckily we live in a state that provides free therapy and respite and that has helped quite a bit.  What else can I say?  Hayden is the sweetest, happiest, most adorable (as a mom I’m totally bias) child!

Life for us is a series of ups and downs.  I always try to remember the ups more than the downs.  Emma has shown me so many things over this past six months.  More than anything I realize the power of faith, hope and love.  I realize that God cares about me more than I know and my children as well.  That maybe Emma and Hayden will be okay, after all.

So Murphy the Musical, huh?!  Life may not be all singing and dancing, but ours is full of plenty of laughs, some serious drama and lots of music that has the ability to bring us all together when we’re feeling scattered.

Here’s a slideshow inspired by my family!  Couldn’t love them more:)

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3 Comments

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  1. Jessica Sunshine Bodey / Dec 12 2012 6:45 pm

    My son Lief O’Neill is not so much using facilitated communication anymore but rather “supported” communication. We used to do hand over hand, hand on wrist, hand on elbow, hand on shoulder and now a light touch on his neck. He has a video called “Typing Brothers” on youtube that also chronicles his conversations with another young man who types to communicates, Henry Miles. I have been asked to share his video so that parents who are on this journey can see what this part of the path looks like, when you are between full facilitation and totally independent typing. Lief is always happy to have other penpals to talk to and identifies very heavily with his typing community. It is a pleasure to find your family. Lief is also in the hospital at the moment, awaiting a heart transplant and information about this and Lief can be found at Life for Lief on FB. Thank you for being courageous enough to spread the word and bare the controversy. National media is interested in Lief’s story because of some hospital’s reluctance to serve a severely autistic person but the FC controversay is the last thing I want to deal with as we spread the word of his sucess in the donor program. However, it is unavoidable and his abilities are able to be verified in other ways (independent pointing, word choice cards, multiple choice ect) but the old demons just won’t die. Good luch on your journey!

    • paperkids / Dec 12 2012 7:11 pm

      Jessica, Thank you thank you for sharing this with me! I will be praying for Lief and his transplant. I cannot imagine what you are going through. I currently am up to Emma’s shoulder for support and of course we are always striving for complete communication, but I am more compelled than ever to spread the word that communication in different forms must be accepted even if not fully understood. I would love to share Lief’s story on my new blog I am beginning in January! It is all about ending those demons and getting word out in the mainstream. I will email you. Praying for you all!

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