Tuesday, May 1, 2012


This morning, I woke up to a Ryan who's decided that the earlier he gets up, the better chance he has of staying home and playing in the yard all day.  I have no idea where he got this.  But he's been up between 6  and 6:15 twice this week, and that's about an hour early.  We had several tiny meltdowns this morning. Little bouts of screaming, fussing, "AYOAYOAYO!" and the like.  In between working together with Eric to get he and Ryan out of the house, I read THIS

Neat, no?  The wonderful woman who writes "Diary of a Mom" is going to the White House.  Going?  Did I mention that she was invited?  Did I mention she's going for Moms and Dads like us and kids like Ryan?!  

I scrambled between those little fits to cobble together this:

FIrst, how amazing! Amazing both that you get to do this, and that you want to know what we think. For me? I’ll attempt to shove Niagara falls through a drinking straw, because you asked and you’re awesome like that.
We’re drowning out here in the country. The last agency I tried to get therapy in-house (so Ryan’s not missing three hours of school twice a week for me to drive him the 50 minutes one way for ABA at Baylor) told me that they’d put me on a waiting list because there’s one therapist for our area. By area? I mean several counties. We are a one-teacher’s salary family, both with college educations, and we can’t figure out what do to other than keep pedaling and praying that the money to drive out there holds out, and that another therapist would rise up who loves these kids and wants to take t them and us by the hands and HELP US figure out how to help him. We are taking advantage of medicaid for Ryan and HIPP (Health Insurance Payment Program) for us, and because of HIPP, ends are meeting for the first time in four years. For that we are thankful.
More than any of the money junk (because honestly, even with the money there’s not enough hours in the day)… I want him to know that no matter how much you have, when your child is getting bigger and to the point where he might hurt you or your younger children (accidentally, of course) during a meltdown, its indescribably heartbreaking. To have NO IDEA what started it, or what made him so angry and/or scared that his whole body turns red, and he’s sweating, crying, and flailing, and to be completely running out of options of how to help or even properly deal with him behaviorally and emotionally, is a fear I can’t describe. It’s a heartbreak I can’t describe. The future? We have one fearful foot in the future, okay maybe just a toe… but every look scares the bajeebers out of us.
What would I tell him? We’re drowning. We’re scared for Ryan. But we aren’t gonna drown without a fight. ;-)

The truth is that we do work hard to keep our heads above water.  We have been given much!  Please hear that!  But for every time I've come here to tell you how thankful we are, there has been a down-side... at least one, if not ten... that brought us to our knees.  It is tempting, when watching our son so distraught, so confused, to feel sorry for ourselves.  For him.  For the littles.  Any time I'm asked to tell it like it is, I dip into the closed, locked away box of how it really is and do my best to get just the most important parts.  It's a bit like medicine.  Take a little and it helps.  Swallow the whole bottle and, well, you're in bed the rest of the day.  Or the week.  It can be a hard road up once you've fallen into the pit of self-pity.  

The problem is that sometimes you have to tell it how it is.  As my Mama used to say, sometimes the truth is not pretty.  And it's not.  There's nothing pretty about a child so distraught that all he can do is hold his ears, beat his ears, scream, cry, shake, and hit.  And honestly, I don't want his suffering to be sugar-coated.  I don't want it to be overstated, either.  I find myself so often on the tricky tightrope of positivity versus despair.  Too far to one side, I throw out opportunities to stand up and educate, inform, and further the cause.  Too far to the other, guess what?  Same thing.  The answer for every day is the middle.  We can't deny our feelings.  We've actually tried pretending that it's all okay, we're good.  No need for help here.  But that's the way wrong answer.  It's not honest, and it sure not helpful.  

Take my little accident yesterday.  When I saw the wound, if I'd pretended it was okay and gone about my day with all the layers of the skin on my arm laid open, pretending everything was fine, what would have happened?  Pretty dumb, right?  

So what would happen if I just turned a blind eye and allowed Ryan to go to, say, an amusement park or even walk to downtown with his class without someone to hold his hand?  What would happen to him if I decided that well, he's old enough to go to the store for me.  Here's the money, kiddo.  Here's the list.  

If you know him, you know how ridiculous that is.  First, he doesn't know anything other than how to get to the van.  He couldn't listen to instructions, doesn't understand money, how to shop from a list without guidance, how to get to the store or even the need to stay away from oncoming traffic!

This morning, I did my best to tell it how it is.  Seeing reality in print... even hearing the words "my oldest, who has autism" come from my mouth... is not at all easy.  But to attempt to sweep our challenges under the rug of denial sends us into false hope and security, and that is nothing short of dangerous.   It is far from wise... no, it's stupid... to ignore the gaping hole in the arm of resources for help with our sweet children.   It's even more detrimental to turn a blind eye and a deaf ear to the people who need to be removed from caring for these children (if you're not aware that these children are vulnerable and there are major problems with people taking advantage of them see HERE and HERE).  

These children are precious to us, and they are certainly precious to God.  What does he think?  Where does he fit into all this? Well, we're to protect these kids.  

"Do not curse the deaf or put a stumbling block before the blind, I am Yahweh." Lev. 19:14

We're to take a firm stand for these kids.  A good friend of mine, when we were discussing places like Psalm 37:7, when we're told to "be still".  Be still does not mean do nothing!  Do your homework, take your stand, be truthful and honest, forthcoming and with integrity, and take your stand.  He will give you what you need as you need it.  

"Be still before the LORD and wait patiently for him; fret not yourself over the one who prospers in his way, over the man who carries out evil devices!" Psalm 37:7

Keep going.  Stay the course.  Do your job.  Do not lose hope... dip into the storehouse of reality to tell it like it is, but remember that God is sovereign.  

Tell your story.  If you're not comfortable blogging, tell it wherever you feel comfortable.  But don't hide. Please don't hide.  That's too painful.  You're worth more than that!  Your child... your children... your family is worth more than that!

And while you're over at Diary, tell Jess how thankful you are for her stand.

Thanks be to God for His Sovereignty!

No comments:

Post a Comment

Related Posts Plugin for WordPress, Blogger...