Tuesday, April 30, 2013

Just One of Us Vol.2

This is a continuation of yesterday's post.  If you haven't been there, you might want to click here.  Back to your regularly scheduled post.  

Having practiced, written, practiced, stewed, scratched out, and practiced a little more, I still didn't sleep Friday night.  What if I misrepresented us?  What if I accidentally exaggerated?  What if this isn't at all what they wanted?  And the worst... what if I hurt your feelings?  I'm so NOT a public speaker.  

Right up to the time the coordinator of the BARC introduced me at the Gala itself, I fought the urge to cut and run.  As the parent speaker, I felt like I represented all of us.  I'm still thankful to Eric and his Dad for reminding me to take a step up... no really... so that I wouldn't trip and fall on my nose on the way to the podium.  Do those guys know me or what?  

So with part of my family's support in person and part back in Groesbeck caring for the kids so I could do this, through a a whirlwind of surreality, I made it to the microphone.  I told everyone that I'm Ryan's mom... and then it was on.

Ryan, our dear oldest, lives with classic autism.  He, unlike his neurotypical younger brother and sister, had no discernible words when he was two. He wasn’t speaking, gesturing, or nodding.  While other friends’ kids complained of their young ones yelling out for mama and daddy in the middle of the night, Ryan didn’t refer to us by name or look us in the eye.  He would play for hours by himself.  Ryan was unable to even choose, by pointing at pictures, what he wanted for lunch.  Any time Ryan was around other kids, he seemed to look for a corner where he could get away.  Given the opportunity, he would do this cute hand-flapping motion (which, I must say, is super adorable), concentrating so hard on anything that would spin. Although all these things seemed a bit off, the greatest concern was still that he wasn’t communicating.
 We called ECI, thinking that maybe he had a speech or hearing problem.  But through the course of the evaluation for speech, it was first suggested that he may be on the autism spectrum.
 NO!  This can’t be happening.  They’re wrong.  There’s nothing wrong with my baby.  I had heard just enough of the struggles of parents raising autistic kids that, in my mind, I could never deal with that.  That couldn’t be it, because there is no way I could handle that.  I prayed fervently that this cup would pass from my sweet boy.
 Time passed, and we still didn’t have a diagnosis.  Part of the problem is that we didn’t know what to do.  We didn’t know where to turn.  Everyone had advice. People emerged from everywhere who seemed to know what we needed to do, and that was all incredibly overwhelming, especially considering that most of their advice was different… not to mention completely out of our price range!  So we did what we could, which meant putting Ryan in summer school the week after he turned three. Not what I planned, but surely this would fix it all.
 Still, I prayed that it wasn’t autism.
 Through all this time, the flurry of paperwork and questions about whether or not he can kick a ball, walk backwards, take steps in stride, and the sea of hundreds of other questions, and over the next three years, we finally received an answer.  The day I knew the paperwork from his evaluation would be coming home from school, I searched his backpack and read through it all, finding his diagnosis somewhere in the middle.
 Even with three years to process it… even dealing with it every day… finally reading the words “classic autism” was still hard.
 Right toward the end of those three years, just when we began to reach the end of what we knew to do, we discovered the Baylor Autism Resource Center.
 Richie and Maelynn have grown up in the second floor hall of the Draper building, coloring, reading books, and playing quietly while their brother receives the ABA therapy he needs from the students of the BARC.  They adore their brother, so the fifty minute drive from Groesbeck to the Baylor campus twice a week is a part of life.   Richie even tried to convince one of our therapists that he had “autisites” too, so that he could go in to the fun room with all the toys with his hero.   To which, of course she smiled, and said, “Sorry bud… there’s no way you have autism!”
 I guess Richie figures that whatever Ryan’s doing must be pretty fun, because even yesterday he almost escaped into the BARC right behind his brother!
 But he has no idea the kind of work Ryan and his therapist are doing.
 He has no idea what it’s like to have to think about a response when someone says “Hello” or “What’s your name?”
 He can walk right beside me and stay with me in traffic, because he understands that while he thinks cars and trucks are cool, they can also be very dangerous, and that beside Mom or Dad is safety.  If I ask, I can generally get him to hold my hand.
 He has the words to tell me why he’s frustrated.  Uncomfortable.  Tired.  Sad.  Scared.  Hungry.
 He can transition from coloring to a trip outside or go to the bathroom when asked .  He can process that request, then carry out the task, anytime, anywhere.  Not that he always does, mind you.  J For Ryan, these things come much, much harder.  We fight to do every little thing with him, it seems.  Everything from a trip to the grocery store to an amusement park is something to be planned, social storied, and so often ends in screaming, hitting frustration for our oldest.
 At times, I must admit, it becomes quite exhausting.  And there was a time when we didn’t know where to turn, where a one-income teacher’s family could find ABA therapy, which I was quickly learning was the best thing to help ASD kids learn to navigate the world.
 Everyone we’ve worked with at the BARC has proven that to be true.
 Each one of the therapists Ryan has worked with through the BARC has been amazingly patient, caring, kind, and helpful and not just to Ryan himself!  They are always more than happy to listen to anything that would help Ryan, ranging from what kind of day he had at school to what problem areas we are noticing that need the most help.
 These ladies aren’t just playing with my son for an hour two days a week.  They are helping him learn to navigate the intricacies of life, from waiting to receive something he’s requested, to trying new foods, to transitioning between activates, to riding an elevator without having to be carried.  (yeah, that last one was for my back.  It was exciting…) Each of the exceptional young ladies with whom we’ve worked will always be special to Ryan and our family.  Each of them has spent hours in careful preparation and data sorting to show and explain Ryan’s progress, not to mention the hours they’ve given to the actual hands-on, in the trenches task of working with Ryan.
 These ladies are fearless.  They endure the meltdowns, the refusal to participate, the confusing and a times incoherent communication… and sometimes, that’s just dealing with me!
 We have always been thankful for the opportunity to participate in the ABA program at the BARC, and of course in the day camp, to which Ryan is already looking forward.  At the beginning, we thought we might be helping these students, and that this would be better than what we were receiving, which was nothing.  But in reality, we have received excellent ABA therapy from well-trained, caring, gracious, excellent individuals who emerge from every therapy session a little more in love with our little guy.
 These therapists are far more than we could have imagined.  They have been so much more than therapists.  They have been the hands and feet of Christ to our family.
 Your presence here tonight supports the furthering of the work of these folks who are giving the precious manna of affordable ABA therapy, social circles, and so much more to the ASD kids in Waco and the surrounding area.  By supporting the bettering of these children the way these people have worked for my Ryan, you are not just supporting a great cause… you’re investing in something that has been an answer to our prayers.  By being here tonight, you’re investing in hope.  Hope that says, yes, it is autism, but we’re here, and you’re anything but alone. 

In my relief to be finished and desperation to be back in my comfort zone between Eric and is dear parents, I looked up from the bee-line I was making to my seat, and saw what was one of the most humbling things I've ever seen.

You stood.

You stood not because I did such a great job of moving those words around, but because you are there with me.  And it was a relief to hear someone say it.

I still can't believe it.  I'm still thankful for getting the opportunity to speak for us.  My heart overflows with gratitude to the Lord for giving me composure.

During the evening, there was a silent auction.  There were so many wonderful things on which we could bid, but the one thing that we wanted was a painting Ryan helped with in therapy.  Sadly, we were outbid, but went home with our hearts full and our heads swimming in a sea of all the stories so many of you came forward and shared.  Full of your tears and your hurts and fears.  Full of wishing we could make things easy for all of us.  For all of our kids.

We got home, hugged and kissed on our kids and put them to bed.  Life is back to normal here, just pedaling through our days, doing our best to make the most of them.  But in some ways, it will never be the same.

Thanks be to God again for this opportunity... for carrying me through it... for your stories... for your every day... and may God be with you as you keep pedaling too.

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