Thursday, April 19, 2012

The Wheels on the Van

Yesterday, about 2:30, outside the therapy room:

Richie: Oh no! I hear Ryan screaming, Mommy!

Me: I know, sweetie.

Maelynn: Help him stop?

Richie: Ryan's hitting the walls.

Me: Yes, baby. I know.  He must be working hard today.

Richie, with a proud sparkle in his eye: "I bet he chewed and swallowed, mommy!"

Tuesday we had our annual ARD meeting.  This, if you're new to this alphabet soup we call education descriptors in Texas, is the meeting where everyone with anything to do with Ryan (mostly) is present, presents what they do for him, what they think he needs, and how we should proceed from here.  We learned a ton, and this time we shared a ton.  Call me crazy, but I actually told the ARD committee that this whole thing makes me want to throw up.

Every. Time. We. Go.

We thought, talked through, prayed, and were as prepared as we'd ever been.  There is so much that needs to be addressed with a child like Ryan, and we did feel like egos were out of the way for this one.  That said, we do tend to try and think the best of people.  We listened and were happy with what he's getting, because honestly, it's way more than we could pay for.  But this time, instead of listening and absorbing and keeping my mouth shut, I found the words to say what I needed to say.

How did I get through so many years without having to speak up and stand for anything?  Grace of God. That's all I can say.  Just to be clear, Ryan has not been mistreated to my knowledge.  We feel like the teachers (especially his), and generally the rest of the folks who deal with Ryan truly care for him and his welfare.  Not just that but giving him a shot at real life... you know, the best shot he can get.  As close as they can get to the same every other kid gets.

This time, though, I felt like maybe they weren't quite aware of Ryan's need to be guided.  You know, kept safe, out of harm's way.  For example, the ladies who stand out where Ryan gets into school know him, they know me, and they do a great job.  They are great at coaxing him out of the van in a caring, sweet, joyful way.  But of course, that's not part of what the ARD is about.  The state doesn't have paperwork to reflect that Ryan stims on the wheels of vehicles and will walk into them, coming at him, completely unaware of the danger.  But I made sure, this time, that they knew, and bragged on these ladies.  At the same time, I needed to know what to do when these ladies aren't there, because everyone misses every now and again.

No one on the committee, except his teacher, knew Ryan did that.

Thankfully, they listened, admitting they didn't know and likely should.

Then you look over to the table behind the meeting where Richie and Maelynn are playing.  Our principal noted, after playing with them during part of the meeting while she listened (and she did), that they are so smart and sweet, they know all their colors and numbers, and Maelynn was using some pretty advanced phrases for a two year old.  Again, by the grace of God.

At one point, the principal encouraged our parenting, which was sweet, but as she said something about that, Maelynn said "It's all my fault."

Calling attention to her, I noted what she said, and followed with a reminder that these kids see battle.  They see frustration.  They see what may or may not look to them like favoritism on our part.  They see their brother in such a disturbed, scared, angry state that he can do nothing but hit and scream, turn red, and sweat.

They see us at the end of ourselves.

I do not know where Maelynn got that phrase.  Some one, some time, some where said that and it stuck.  She says it when it doesn't make sense, mostly.  Just a two year old showing off some awesome speech skills. But no matter when she says it, those words from her precious little face break my heart. You know what else?  I don't think it hurts to give them a look into our... into Ryan's... world.  They're at times making decisions that could affect him, and although they can't hold all the cards, they need as many as they can get.  I'm sure you noticed that the littles were in the meeting.  Why would I do that?

For all the reasons we just discussed.  It can't hurt for everyone to see their faces.  To hear how they love their "pal Ryan".  After all, they see the problems.  They might as well hear the solutions.  In the sea of paperwork that is an ARD meeting, and is so often life in a public school, I'm a firm believer in faces.  Having a face to put with a name not only helps us remember important things, it also can push us to see the problems we didn't know existed.  It's not enough that the people working with him know... it's good for the administrators to hear what all goes into the school day, and those people who make sure your child is safe?  I'm all about giving praise where it's due.  And folks, coming out in the rain to keep Ryan from walking under the wheels of the van is praise-worthy!

They can't see into our house.  They can't see into our hearts.  So we'll take that hour or two, once a year, to push as much of Niagara Falls as we can through a drinking straw.  If you have an ARD coming up, don't be afraid.  Take courage, friend.  Your child needs you to speak for him.  To show them the full rainbow of who he is, from the worst moments to the heart-melters.  If there was ever anyone who was worthy of standing up and calling a spade a spade, it's the little man who fell into my chest and whispered "I love you" between chest-pounding, screaming sessions this morning before school.

Thanks be to God.

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