Are you ready to listen?

1 in 36
Do you see that?
Do you comprehend it?
Does it matter to you?
Are you ready to listen?
Are you ready to understand?
Because you don't.  You don't understand it, unless you are one of us.  Unless you live with it, day in and day out.  You don't understand.  You think you do, but we can tell you don't.  And you need to.  You NEED to understand this, because it's going to affect your life too, and your childrens lives.  Even if they aren't one in 36, they are getting a world that will be changed by it. 
Think about it.  1 in 36.  If it was 1 in 36 with chicken pox, people would freak out.  If it was 1 in 36 cars recalled, there would be an uproar.  1 in 36 dead...it would be on every news station all day long.  But ...crickets.  1 in 36 with autism...and no one says a word.
And I think it's because you. don't. understand.
You think autism is the 4yo who knows every dinosaur and their dining habits.  The teen who is a "bit socially awkward".  The guy at work who doesn't realize no one cares about his ONE hobby.  Those are the faces of autism to you.
Well, it's time to talk.  My son has high functioning autism.  High functioning.  Sounds great, huh?  Yeah.  Let's talk.
This is the face of high functioning autism.
It's making grilled cheese multiple times a day for weeks because he doesn't eat anything else...for weeks.  It's buying cheese in 5lb blocks and being worried you will run out.  It's buying bread a dozen at a time because you go through a loaf a day just on him.  It's a fridge full of yogurt and a half dozen bags of frozen pineapple because that was his last food, for 3 months...and then one day, he wouldn't touch it.
It's wondering what sleep is, for him or you.  It's being glad he's finally old enough that you don't have to stay up with him 24 hours a day for a few days at a time.  It's worrying that while you sleep, he will decide to cook his own darn grilled cheese.  It's being thrilled if you get 4 hours sleep without him waking you up.
It's meltdowns in the parking lot of the grocery store.  It's calling the sheriff on your 12 year old, because you can't get him calmed down and he's becoming dangerous to himself and others.  It's taking him to the ground and sitting on him to keep him from hurting you and the staring bystanders.  It's sobbing as a kind stranger lays on the ground next to him for 20 minutes trying to help you calm him.  It's taking him to the ER where he is restrained and sedated...and it's waiting for the hospital to find a placement in a psychiatric hospital for stabilization.  It's visiting him there on Christmas.
It's being thrilled that THIS TIME, the hospital they get him into is only an hour from home, because last year it was 3 hours each way.  It's being overjoyed that THIS time, he's only there 4 days, as opposed to 10 last year.  It's considering that to be improvement.
It's spending a ton of money on gas to go to therapies and counselors and such.  It's not doing fun family activities because he gets overwhelmed so easily...and because you can't afford them.  It's always keeping a bit of money hidden for more bread and cheese, or whatever the next food is he eats.  It's keeping snacks in the car, because when he's hungry, it's NOW, not "when we get home"...and HE is who the jokes about "hangry" are about.  It's worrying about getting together with friends, because he might have a meltdown.  It's not HAVING friends...because most people can't handle it.  It's being afraid the internet will go down because that's his soothing mechanism.
It's hearing people say things like "he melted down over that? Sounds like an overreaction"..."Just tell him no.  He's spoiled"..."you are too hard on him"..."that kid needs a good spanking"..."I would never let MY kid act that way"..."He will eat when he's hungry.  No kid will starve themselves"..."You can heal him with this diet/oil/supplement/vitamin/therapy/exercise/meditation/discipline"...
It's knowing that the only people who understand are other autism parents.  Even your family, much as they love him...they don't get it.  It's being utterly alone much of the time.  It's not having a church community because he can't handle the noise.  It's not being able to participate in normal "kid" activities like sports, clubs...because he may meltdown. 
It's worrying that ...maybe this is it.  Maybe your life will always be one meltdown after another...one grilled cheese after another...one hospitalization after another...until he's an adult and it becomes jail...or worse.  It's worrying that one day, it will be a phone call telling you he threatened to shoot someone and got shot himself, maybe by a cop...because he had a meltdown and no one knew he had autism.
1 in 36.  It's 1 in 36.  Seriously.  Do you hear us?  Do you understand?  Do you care?

The car guy

My husband is a car guy.  Driver, fixer, lover...of all things mechanical.  I...am not. We have worked out a very good division of labor regarding cars over the years we've been married.  Basically, he does the labor, and I do any necessary division, lol!  
Ok, actually, my job is to tell him if the car makes any odd noises or does something unusual.  Luckily, I rarely have to do this anymore.  Now that he's retired, I drive less.  We go almost everywhere together, and even 75% crippled, he's still a better driver.  So he usually hears the weird sounds and such.
Praise the Lord, too, because the conversations were usually...well...long.  
"Honey, the car made a really weird sound today"
"What kind of sound?"
"Um...like...a...uh...noise"
Sigh.  "Ok...where did the noise come from?"
"Well...uh...not inside the car.  I know that!"
Longer sigh.  "Ok...from the engine?"
"Um...probably."
"OK, what were you doing when it made the sound?"
"Well, one of the girls was telling me about a book she's reading, and I was yelling at the boys to quit burping at each other, and trying to remember if we had sour cream for your tacos tonight...by the way, we are out of sour cream..."
Very long sigh...then with slightly gritted teeth..."I'll listen for the sound while I go get sour cream".
And amazingly enough, he could always figure it out.  I'm so lucky to have him. If I had to tell that story to a mechanic, they'd be busy writing notes on their clipboard.  "Got a live one here.  Charge her double for the ozzoboznot".

Reflections

I remember when she was a tiny baby.  She was so small and new, and there was so much time.  It seemed it would be several lifetimes before she was grown and gone, longer than years...almost forever.  And I needed to teach her to sit and walk and talk and...
I remember when I had 3 under 8...4 under 10...and life was so busy.  There was the cooking, the dishes, the laundry, the cleaning...and all around making sure they did enough pages in this workbook, spent enough time on that curriculum.  I had to be sure they learned enough of the right things, you know.
I remember when I had my first teenager... people telling me how sorry they were...how hard it would be...  others telling me how teens were.the easiest bestest things ever.  And there I was, stumbling through a minefield carrying fine China and wearing a blindfold.  So worried about letting her make mistakes that I never let her make good decisions either.
And now...forever away is here.  She has grown fine wings in spite of me, and is on her own.  An adult. ..married...and now to be a mother.  And I look back and see that I should thank her.
Now I know that forever passes so quickly, so I snuggle this newest baby of mine extra long.  He will learn to sit and stand and walk...but I won't waste time worrying at it.  I will enjoy this fleeting forever.
Now I have children at home from almost 16 down to 6 months...and I know it will all get done.  If we eat sandwiches some nights and relax...if we pull clothes from the clean laundry for a couple days...if we don't sweep often enough...it's ok.  And the workbooks and curriculums don't matter.  They will learn the right things at the right times...for them.
Now I know to relax the grip on that teen.  Let her make the mistakes.  Take off the blindfold.  Enjoy watching them become adults, and be a cushion when they need a soft place to fall.
Thank you, my firstborn.  You got stuck with a newbie, but you taught me well.  Maybe your siblings should thank you, too.  Good luck on that one!

Group B Strep...a different story

I shared this on a group I am on for mamas, for a mama making the decision whether or not to treat for being group B strep positive in pregnancy.  I left a lot out.  So much of the details...they are burned into my memory, but I'm not sure everyone wants them.  Some things...change you.  Forever. But I just wanted to share it publicly, in case it helps someone.

Ok.  here is our GBS story...it's a little different...
I was never GBS+ except with #4, out of 6.  I struggled with it.  Almost fought the test, as I'd never done it before and thought it was silly.  then almost refused the antibiotics.  I'd been with a midwife till midway through and had to switch to a obgyn for financial reasons, and was very unhappy about his rules.  but the abx were NOT optional, and dh wasn't ok with me refusing them, either.  So, I gave in. 
Less than a month later, dh got sick.  Really sick.  We spent a month back and forth to drs 2-3x a week.  Misdiagnosis after misdiagnosis.  it was bad.  He lost 40lbs in a month, was in a wheelchair, a dr accused me of overmedicating him (almost suggested munchausens!)...when they finally caught it, he was going septic.  Turned out, he had a UTI/kidney/prostate infection that had abcessed into his back/hip/SI joint/thigh bone...and it was Group B Strep.  It was bad.  He spend 11 days in the hospital, 3 surgeries, came home with a wound vac and a PICC line.  They almost amputated his right leg.  He was told he'd never walk again, never work again...he did both.  Took him 8 months to get back to work, but he did.  He fought to keep working for 7 years, but a year and a half ago, went on permanent disability. 
Group B Strep scares me.  I am SO GLAD God put me with an OBGYN who would NOT ALLOW me to skip the abx, because I would have.  And if it could do such to my fully grown husband, who was pretty darn healthy (he was diabetic at that time, but completely diet controlled, physical job, active guy...)...what would it have done to my baby.
DS1, that baby, does have Autism Spectrum Disorder...specifically Aspergers.  Did the antibiotics cause that?  I don't know.  I will never know probably.  But would I change the choice I made for the abx?  Never.  Is it the right choice for you?  I don't know.  I really don't.  But really pray about it, and talk to your husband, etc.  Because it CAN be a huge decision.  Dh still has battles with it.  he gets UTIs several times a year, and about half are GBS.  He is just recovering from one now, and was almost in a wheelchair again for a few days. 
Hugs, and praying for your decision.  I don't share this to scare you, but to tell you honestly what a rough bug it is.  If I can prevent one other mama from thinking "Group B Strep?  What?  Oh, no big deal" the way I did...I will.

One more step

One more step.  Take one more step.  Where?  Wherever.  Wherever God is leading you.  Maybe you know where, maybe you can’t see the path ahead.  Doesn’t matter.  Take that step.  He’s there ahead of you.  He always goes ahead of you. 

We’re moving into a house finally.  Well…sort of.  After 13 months (approx.) in the RV, with 6 kids and numerous animals, we found a house to rent, and started getting ready to move in.  You know, paint and stuff...  And then the toilet broke and flooded the house…so we’re back in the RV for a couple months…with 2 extra kids, because we’re also informally fostering 2 little girls.  So there are now 10 of us in the RV, lol.  And the RV is a huge mess because we moved half out and then back in…and Megans car broke down…and money is tight as always…and Steve is now diagnosed with migraines on top of everything else, and they cause him to vomit frequently…  And people keep saying “I don’t know how you do it” and things of that nature, but you know what?  I don’t do it.  I don’t have to.  Because there are some things I know for certain, and one is that when I get to the end of myself, that is where I find God. 

Every single time.  He’s never failed me.  He’s never been late.  He’s never stopped off to get a coffee on the way.  When I run out of patience, or strength, or energy, or anything else, God is there to lean on, and to fill me up. 

People say “God never gives you more than you can handle”, but that’s not true at all.  He very deliberately does.  He gives you what you can’t handle…alone.  He gives you enough to take you to that breaking point, and then He picks up the pieces and puts you back together better and stronger with Him.  He’s done it for me so many times that I can’t even tell what parts are new and what are old and where the glue begins and I end.  And every time, I’m better, I’m stronger, I’m more like the me He wants me to be.

Honestly, it doesn’t get any better than that.  Than to know that He’ll be there, every time I need Him.  And to that there’s nothing to fear in that next step.  So go on, take the step.  He’s waiting for you.  I promise.  Much more importantly…He promises.

a mad passionate love affair

I am madly, passionately, insanely in love with the South.
You see, we're new here, so I'm shocked by this.  I expected to like it, but not to feel this intense..."rightness", right from the start.  Like coming home, where I'd never been before.  Like the entire area was saying "there you are, we've been waiting for you", as we drove along.
I love the people.  Everyone is so friendly...they wave as you drive by, even if they don't know you.  They smile and say "hi" as you pass in the store.  They chat everywhere.  It's wonderful.
I love the accents.  From a light touch, to an unintelligible, thick as syrup drawl, I love it.  It's musical.  It's beautiful.  It's contagious, and the kids are already teasing me about mine.  It's only sometimes, but yes, Ah'm developin' it.  And I'm thrilled!
I love the weather.  I love thunder and lightning, and rain.  It's like fireworks, but better.  I love that it's random, that unlike CA, where it almost NEVER rains in the summer, here it rains whenever the heck it feels like it.  I find it fascinating.
I love the humidity.  Yes.  I said it.  I admit, there have been a few days here and there that have been oppressive, but for the most part, it's just nice.  I love that it's not dry all the time.  My skin loves it.  My lungs love it.  It's awesome.
I love the green.  Everywhere, green.  Trees, bushes, grasses, everywhere.  Green...and flowers!  Beautiful flowers.  It's like spring, all summer long this year. 
I love the water.  There is just water everywhere.  Creeks, rivers, ponds, springs...so much water.  I thought northern CA was wet and green... Boy, I knew NOTHING! 
I love the religion.  It's so different here.  There are churches EVERYWHERE, and everyone talks about church.  One of the first things people ask, after your name, is where you go to church.  Stores have signs about Jesus, clerks tell you to have a blessed day, billboards, bumper stickers...Jesus is EVERYWHERE!
I love the wildlife!  We see deer, squirrels, racoons, turtles, birds of all shapes and colors, and the BUTTERFLIES!  Amazing.
I'm sure there's more, but my dessert is ready, and I'm tired.  Hugs, all!  I hope you are as blessed where you live as we are here.

This is my mission field

Sometimes, it seems like the entire Christian world is all about missions.  Uganda.  Haiti.  Mexico.  Romania.  Talking about missions.  Funding missions.  Sending their kids on missions.  Going on missions themselves.  And I start to feel like...less.  Less of a Christian, because I haven't been on a mission.  Can't afford a mission, haven't sent my kids on missions.  I get jealous of the whole idea.  A trip to another country, to help people who NEED me.  People who need JESUS.  And I could be His hands and feet, and help them.
But I know, this IS my mission field.  THIS is where God has placed me, where He has called me.  I am to be His hands and feet here, to children.  My children (where I fail daily, as I'm sure Jesus never shrieked at someone to "STOP HUMMING OR I'LL TIE YOUR LIPS IN A KNOT"), and to other children around us.
And right now, I KNOW that I am where He wants me.  We live in a neighborhood full of children, some of whom seem to REALLY need someone to love on them.  And to bake cookies for them.  Have snacks after school for them.  Hand out lollipops to them.  Have a basket of crayons, and a stack of paper on the table for them.  And when I see my daughter, out on the lawn fixing bikes for the little guy next door, or another of the kids asking if he can share his toys...I know that this mission field is more for us, than them.