Yes, I Remember ...

"Hey, Mom, remember that time you fell & grabbed that guy's butt to break your fall?!" my son said to me.  Ummm, yes.  Every second of every day.  It didn't help that the guy was wearing American flag pajama pants.  I practically see those pants in my sleep.  I've said it before, I have trouble letting go of some thoughts.  Also, I fall a lot.  So add my lack of grace to my over-thinking of things ... yes, I remember.

Evan thinks about things a lot.  He loves certain things like his bags, Apples to Apples cards and now plastic cups.  He thinks about them all of the time.  Even in the middle of the night he will call out asking where is his baseball bag.  Or lately I can hear him knocking cups together like he's just checking that they are still there.  After a knock or two he's okay and he goes back to sleep.  He doesn't leave the house without a favorite bag full of his favorite cards and favorite cups.  Leaving the house is one of the most difficult, lengthy processes.  Getting him to focus on just one bag and not every single one of his cards and cups can be overwhelming.  If you wonder why we are always late, this is usually it.  It has become a habit for us to get 'the bag' before we leave.  Evan doesn't often let us forget it but we have learned the hard way to think one step ahead.  Bring the bag now or go back and get the bag later.

I get after Evan sometimes about his obsessions.  I want him to stop obsessing so much and just once be able to forget about the bag, the cards, the cups.  What will he start thinking about next?  What will be the next obsession?  It can be so overwhelming to have to add these things to the day to day routine.  Life would be so much easier if I didn't have to remember to bring the bag full of stuff and could just leave it behind.  It's heavy.  Really heavy.  Sometimes everything spills out.  Sometimes it happens in private and sometimes it's in public.  Sometimes people look at us like we are crazy for carrying these cumbersome and useless things around. But try explaining that to Evan.

So I started thinking about Evan's obsessions and realized they aren't so different from my obsessions.  My obsessions are just more socially acceptable.  I am better at hiding my obsessions.  But like Evan I keep adding to my obsessions.  There is always the next thing I'm thinking about, worrying about.  It's heavy.  Sometimes my worries and obsessions spill out.  Sometimes in private.  Sometimes in public.  Sometimes others look at me like I'm crazy for carrying these worries on my heart.  But try explaining that to me when I'm in the middle of it all.  Life would be so much easier if I left my bag full of worries behind.

Jesus tells us in Luke 12 not to worry.  He's got this.  We don't need to worry about our life, food, body, or clothes.  He's got it all covered.  I can stop the worry and remembering already!  Now when Evan needs his bag of goodies I'm trying to remember I am not much different.  I'm carrying my own heavy bag along too.  We both have something we should be leaving in God's hands.  

Bible Verse I'm Loving Today:

Luke 12:25

Who of you by worrying can add a single hour to your life?

Two are better than one ...

I have this handful of friends from back in the day.  Okay, they are from waaaay back in the day.  Girls that go back to my high school, even grade school, days.  They know most everything about me.  The good, the bad, the ugly.  They have all the dirt on me.  Not that it's any big secret or that anyone really cares, but I would bet big bucks that if they were asked to spill the beans about all of my ugly past doings they would choose to walk the other way.  They would take the high road.  That's just the kind of women they are.   I know, I'm pretty lucky to have friends like them.

This past year I've come to know a few of Evan's friends a little better.  They are people that have been around him but I didn't really know them until recently.  I'm learning he has friends like my old girlfriends.  People that love him just for who he is.  No expectations.  No standards to reach.  Nothing in return.  They just want to hang out with him.  So awesome!

These are the kind of friends I want to surround my boy.  I want him to have friends that aren't speaking badly of him behind his back.  (Because we all know that kind of thing gets around eventually.)    He needs friends that aren't 'talking out of both sides of their mouth'.  I want him to have solid friends that aren't acting one way with him but then we find they are a complete different person elsewhere.  The Bible also says in James 3:10 "Out of the same mouth come praise and cursing.  My brothers and sisters, this should not be."  I've been guilty of just this.  But I want to aim be the kind of person like these friends of my son and my old girlfriends.  Not only do they speak well of others but others have only kind things to say of them.  They are a joy to be around.  My son and others can't wait to see them again.  (Proverbs 22:24-25)  My son can't wait to get to school lately.  That's how much some of these people bring him joy.  He usually hates school.  Now that's the kind of joy I need to be aiming for!  It hurts to find out your your friendship has all along been based on being someone's charity.  I never want my boy to experience this falseness.  It is such a comfort to know these genuine hearts are surrounding my son.

It's exciting to see the people God is placing around my son without any of my doing.  As a mother I work so hard to make things 'right' for my children.  And yet, there are so many circumstances that I have no control over.  I recently read in A Praying Life, by Paul E Miller, that some of the best parenting we can do is in prayer.  It is an amazing sight to see our prayers come to life in our children's lives when God starts to do his thing.  I am so thankful for these young people that are allowing God to doing great things in their lives and seeing my son be a part of that also.

Bible Verse I'm Loving Today:
Ecclesiastes 4:9-12

Two are better than one,
    because they have a good return for their labor: 
If either of them falls down,
    one can help the other up.
But pity anyone who falls
    and has no one to help them up.
Also, if two lie down together, they will keep warm.
    But how can one keep warm alone?
Though one may be overpowered,
    two can defend themselves.
A cord of three strands is not quickly broken.

The Gift of Receiving ...

I am fairly terrible at receiving most gifts.   I just don't how to say thank you graciously.  Receiving compliments is the same way.  Whatever it is in my psyche, go on, analyze, no matter how sincere,my response comes out stuttering and BLAAAAH.  And the bigger the gift the worse it gets.  If I'm given a significant gift that I could never equally return, AAAHHH!  How does one say thank you to something like that?!  I can hear myself before it even comes out of my mouth.  I know it's going to come off like I don't really care.  But that's not it at all!!  I just don't know how to thank someone for giving so unselfishly of themselves. I so badly want to return their generosity in some way.  I am a terrible gift giver anyway.  I want to be a good gift giver.  I spend hours scouring stores and websites trying to find the perfect something to no avail.  So how do I repay someone for giving me an awesome gift when I am so lame at it?  But what if there isn't any way?  What if I could never repay the gift?  Then what?  How do I rest in just accepting a gift without feeling like I MUST repay this?

Everyone has a different version of what they could or couldn't repay.  Often I don't want to tell others about a gift I received because I can never tell how it will be understood.  Some may be jealous of the gift and I immediately feel this overwhelming guilt that I was lucky enough to have received it.  Another may have the good fortune to have bought themselves three of what I was given.  They will never understand the gratitude I feel and how humbling it is to be in the position of never being able to repay someone else.  So once again, I keep my mouth shut.  I can't tell anyone about the giver's generosity.

Evan is so great at receiving gifts.  He makes everyone feel great about the gifts they give.

 As soon as he even hears about a gift coming his way he can hardly contain his excitement.  It's all he can talk about.  Gifts are what motivate bribe him.  No matter how big or small he loves every one of them.  It is the first thing he talks about when he gets out of bed. The first thing he asks about when I pick him up after school.  The first thing he tells EVERYONE about friend or stranger.  If you gave him a gift he will thank you for that gift FOREVER.  Every time we see you he will thank you for that gift FOREVER.  He will hug you, thank you, tell everyone about that gift.  He has absolutely no problem receiving gifts.

As Christians, we are told to be generous when someone is in need & to 'rejoice with those who rejoice'.  There are so many verses in the Bible about giving to others.  But there just aren't as many on HOW ON EARTH DO I PAY THEM BACK?!!! (Except not repaying with evil, but that's not what I had in mind, of course. I was thinking more like a nice spaghetti dinner.  Which maybe would be evil considering my cooking skills.)

It's the Christmas season that reminds me of the only gift that none of us could ever be jealous of or buy three of for ourselves.  I suppose that's one reason why God chose to give it to us the in way he did.  I especially want to tell others about this gift the way Evan tells others about his.  I want to wake in the morning speaking of this gift.  This gift should be what I am telling all of my friends or strangers about.  I will be forever thankful for this gift.  It is the gift we can only receive and none of us could ever repay.  

The gift of Jesus. 

Bible Verse I'm Loving Today:
Luke 2:10-11 

"But the angel said to them, 'Do not be afraid.  I bring you good news that will cause great joy for all the people.  Today in the town of David a Savior has been born to you.  

He is the Messiah, the Lord."

I'm Thankful For ... Jerry Seinfeld!

Yep, you read it right.  This Thanksgiving I was a little thankful for Jerry Seinfeld.  And not because I love a good Seinfeld show.  Which I do.  Recently Jerry has taken some heat because he said he thought he was 'on the spectrum' during an interview with Brian Williams of NBC NightlyNews.   Meaning, the Autism Spectrum.  Then because of that heat he retracted what he said and then said he wasn't actually medically diagnosed as having Autism. He said he meant he thought he understood what it was like to be on the upper end of the Autism Spectrum.  He gets it.  And honestly, I'm thankful for someone who says, "I get it."  There aren't many people who get my boy.

Recently, my husband and I both separately complimented a young woman because she "gets" Evan.  She didn't feel the need to ask 500 questions about why Evan is the way he is.  She didn't act scared of his different behavior.  She didn't have a problem just glancing to one of us when she didn't understand something he said.  Every moment wasn't a teaching moment or therapy of some kind.  She had fun with playful teasing just like she would any other of the kids that were there.  She let Evan be who Evan was meant to be.  And it is obvious Evan responds to this woman and the way she treats him.  He seeks her out.  He wants to spend time with her.  She makes no demands of him to be something he isn't.  She loves him for who he is.  And because of this, he wants to be around her.  Don't we all want this?

Times like that are rare for us.  Those people are rare. 

So if Jerry Seinfeld says he relates to Autism.  More power to him.  I do keep in mind he is a celebrity.  So unless he comes over for dinner I may never know his true reason for saying what he said.  (I hope he doesn't come over for dinner.  I think his wife is a way better cook than I am.  I know, most people cook better than I do.)  I'm thankful Jerry says he understands the way those that act a little different are behaving.  

I'm even more thankful for those people in my life that love my Evan and love my family for who we are ~ the quirks, super loud 'WooHoo's', occasional hair pulling and not so nice screaming.  All of it.  Those people that make no demands.  Those that love us for who we are.  I'm thankful for you.

Bible Verse I'm Loving Today:
1 Corinthians 13:5

"It does not dishonor others, it is not self-seeking, 

it is not easily angered, it keeps no record of wrongs."

Who I Could Have Been ...

Maybe you've seen them.  The blogs that are making the rounds that a few special needs parents have written about who their children might have been had they been born without their disability.  It's a raw and honest look at their hearts that I can appreciate.  However, it isn't one I personally dwell on much at all.  I tend to look more at who I could have been had my Evan been born differently ...

Without Evan's daily needs I would have been bored.  And we all know where boredom leads.  You know the saying, "Idle hands are the Devil's playground."  When Evan is around there is no being lazy.  He keeps us on our toes.  (Or in the ER.)  Without him constantly asking me to get up off the couch I might just be sitting there, eating sleeves of the newest Oreo flavor (Is it white fudge-covered season yet?!) with my nose pressed into a book or watching reruns of Sherlock over and over.

Evan keeps me constantly learning.  One of my favorite things is learning about science and medicine without actually going to med school, of course.  (See previous paragraph about the couch & Oreos.)  If I didn't have Evan's constantly changing medical history I would possibly be craving this knowledge elsewhere.  I'm thankful one of my interests is fed right here at home.  And my love for learning is put to use immediately.  

I've mentioned before that Evan keeps me humble by calling me a punk multiple times each day.  But I am truly humbled daily by the fact that I cannot raise this boy alone.  I need my husband.  So often we are prone to seeing only the weaknesses in others.  Evan's needs give me the benefit of seeing my husband's strengths on a daily basis.  Sure, this can be maddening for an independent girl such as myself!  Needing someone else to live life is, without a doubt, humbling.  So for this independent girl, I can't help but wonder if without disability would I see my need so plainly?

I don't dwell on who Evan might have been without his disabilities because on this side of seeing Jesus again, I don't believe there is such a person.  I believe that this is exactly how my God intended Evan to be.  Psalm 139:13 says, "... you knit me together in my mother's womb ... I am fearfully and wonderfully made."  I believe this is true for you and for me.  So why would it be any different for Evan others with disabilities?  

So many times we think God isn't doing anything in the lives of our children with disabilities because we aren't seeing the changes in them.  But maybe God is working in not only our children, but those around them also to bring Him glory?  So I am so thankful for how God knit Evan together.  When I look at who I could have been without his disabilities I don't particularly like that me.   I can't wait to see who we all become when God is finished working on us. 

Bible Verse I'm Loving Today:
Psalm 139:13-16

13For you created my inmost being; 

you knit me together in my mother’s womb. 

14I praise you because I am fearfully and wonderfully made; 

your works are wonderful, 

I know that full well. 

15My frame was not hidden from you 

when I was made in the secret place, 

when I was woven together in the depths of the earth. 

16Your eyes saw my unformed body; 

all the days ordained for me were written in your book 

before one of them came to be.

Community ... (Not the TV show, but kindof that too, I guess?)

Community.  I'm starting to see God's purpose in it.  And I wasn't thinking of the TV show Community when I started this, but yeah, they are dead on when it comes to what I'm talking about here too.  It's a quirky take on a group of friends doing life together.   Sometimes life gets messy.  But the mess is always worth the community.

I've been seeking and learning from some other special needs moms.  I've said before, this doesn't always come naturally to me.  So I'm not talking about tons of women knowing all my stuff.  I mean it's one, maybe two other people.  Because we all know how women can behave.  (Women.  And their behavior.  Just look at reality TV shows.  You don't see any "Men Behaving Badly", "Dance Dads", or "Real Husbands of Atlanta/Nashville/Whoville.  Holy cow, I think I found my next blog post ...) Back to reaching out ~ It's not that I really had to reach out, our lives are kindof on display of late so I don't need to say much.  But one conversation leads to another and before you know it we realize we are all dealing with a little of the same thing with our special needs kids.  Different but the same.  Who knew?!  Funny how that happens in community.  Sometimes we are able to help give each other answers.  Sometimes every one's answer is a little bit different for their family.  And that's okay.  But what it ends with is this.  I'll pray for you and you pray for me.  Community.

We've been searching for our son's place in church.  With his special needs and being a teenager we are finding it's becoming more and more isolating for him and us.  We've never been the game night, group potluck, kind of family that was over-involved anyway.  But we miss the little we did.  We want it for our sons.  Disability is difficult on our own.  But so is cancer, losing a job, divorce, aging parents, wayward children, pornography, alcoholism ... the list is never-ending.  I think God made us to come together in our time of need, our time of celebration, whatever the season of life.  We need Community.

As Christians we can have a tendency to retreat from the things of this world.  We can get caught up in our own little world and want nothing to do with those things that might stretch us, scare us or even hurt us a little.  But I don't think that's how Jesus saw us living this life.  That's not how he lived life.  He lived life speaking with the messy people.  Sinners just like me.  John 1:14 says, "He made his dwelling among us..."  I wonder if he would have been out amongst the trick or treaters?  desiringGod put out a blog that addresses just that regarding Halloween.  I love this.  So many times our churches say Halloween is EVIIIIL.  And yes, it can be just that.  And creepy.  And something I shelter my children's eyes from.  (Believe me, The Exorcist & Amityville Horror movies still haunt me both day and night!)  But the fun, dressing up like a cute little puppy, going door-to-door, candy-collecting in the neighborhood kind of Halloween?  Man, that's the stuff of memories!  Some of my favorite childhood memories are of Halloween fun with my brother and sister.  There was nothing more exciting than dumping our candy haul on the kitchen table after walking all over the neighborhood with each other and our friends.  I want my kids to experience the excitement of getting the "good" candy.  I want them to feel the disappointment of receiving the "healthy snack".  They should know the consequence of the terrible costume choice they made is wearing the mask that is smothering for at least a little while.  I want them to cherish every one of those memories someday.  

And I really want them to know what it means to be involved in a Community.

Bible Verse I'm Loving Today:
John 1:14

  
On second thought, if you are dressing your children like my brother & I are dressed here then maybe you should be staying in the house after all.  

I don't even know what I am supposed to be.  A witch? A clown? A witchy clown?  And my brother, well, he is just darn cute in this picture.  But the thing is, he wasn't really into "cute".  He was more the "shoot your sister with a BB gun cowboy" type.  

Both of us remember this Halloween.  We both have big smiles on our crazy faces.  So we must have had enjoyed ourselves and had a pretty good candy haul that night.

Are You In To Hire?

Unless you have a child with special needs I'm betting you haven't heard of the new campaign titled I'm In To Hire. 

You've heard of the Kennedy family - you know, 'THE' Kennedy Family - Whatever your political standings or religious and moral beliefs, leave that out of it, the Kennedy's have done more for the special needs community than anyone I know.  Their various foundations have created and support Special Olympics, The R-Word/Spread the Word to End the Word,  Best Buddies and now, I'm In To Hire.  The I'm In To Hire campaign is a branch of Best Buddies International.  Which is a program I so badly wish we had in our area.  It's a volunteer program that teams up people, typically other teens and college-age friends, with those with disabilities in one-on-one friendships and in workplaces.  It is such an awesome program.  When our special needs kids are young friendships aren't that difficult to find.  It isn't odd to have other mom's involved all throughout elementary school, even in the middle school years.  But once high school hits, kids start gaining independence.  Even in church youth group no one wants the mom hanging around while the other boys open up about struggles they may be going through.  So forging friendships becomes really difficult for our special needs kids.  Besides mom hanging around, the intellectual differences have become really noticeable at this point.  So finding true friendships and job placement becomes really difficult.

I'm In To Hire ... It's a campaign that is promoting the business benefits of hiring people with intellectual and developmental disabilities.  There are a LOT of people in this world that don't see those benefits.  People that are more concerned with the almighty dollar?  They may see some increased liability?  It takes more time, manpower, more heart?  I don't know all the reasons for not hiring those with disabilities, but what I do know is there is a boatload of us out in the world with kids that need a place to work once they leave high school ... and no place to go.  Many of us aren't blind to the risks employers would be taking and are even willing to volunteer along with our kids just to get them out in the world.

So what are we doing you ask?  Well, some rely on local sheltered workshops.  They are great options for those that can make that setting work.  Our local workshop is not-for-profit and commensurate wage based.  Huh?  That basically means their pay is based on their output.  However many nuts/bolts they put together is what they get paid for.  My Evan HAAAAATES this kind of work.  Did I mention he hates this?  He will sit in a chair for hours

on end and put three of these things together, if forced, and come home with a paycheck for about $1.16 for four days.  Yep. How many people do you know that like to screw nuts & bolts together?  All day long.  Day after day.  In the same chair.  At the same table. In the same cold room.  In the same 100 year old barn, turned warehouse, turned sheltered workshop.  I think you get my point.  I know it's a place filled with wonderful people, with their hearts in the right place, trying to do the right thing, with what resources they have been given.  But I just can't make my son sit in a place he absolutely detests for the rest of his life.  The rest of the world has job options, choices.  What's the saying, "Do what you love & you'll love what you do."?  So the opposite has got to be, "Do what you hate & you'll hate what you do."

So we won't be setting our son up for failure, for hate.  We are in search of something more.  We don't have oodles of money laying around, no special needs family does.  Special needs is expensive - doctors, therapies, surgeries, special schools, so many ER visits, gas to get there, extra insurances, etc. (This really explained it well.)  But when the only other option for your son is sitting around the house for the rest of his life, you have to start thinking about possibly starting your own business.  Lots of special needs parents are doing just that.  These parents bought a coffee house for their son's workplace.  This Georgia cupcake bakery is my favorite story and one I would love to emulate.  (But not the actual baking cupcakes part because no one would eat what I bake.  Gag!)  They know there is a bigger purpose in the lives of our special needs kids.  A purpose that Christ is fulfilling.

I am not quite sure what direction God is leading our family in the business world.  We pray every day about this.  Sometimes we pray a lot, depending on how bad that day may be going.  But, if what I'm starting to see happen actually happens ... 

Yes, I will be worried about the almighty dollar ... all of the special needs people that work in my business will be earning a wage based on so much more than output.  Just being a smile at the door can make my day better in ways no daily total output can equal. They are valuable members of our society and deserve to earn more than pennies a day.  I will welcome those that want to volunteer along side a 'Buddy', maybe that's a parent, and I will strive to find that thing that gives each person joy, validation and a way to share with others their God-given gifts.  

And I will definitely be In To Hire ...

Bible Verse I'm Loving Today:
Ecclesiastes 3:15
God seeks what has been driven away.

I'm Done!

She's done.
This is kindof how I feel sometimes.

We get some of our best sayings from our kids.  But Evan has had some really good ones that have stuck with us through the years.  There's "Mom's a punk.", said in jest I think, I hope.  And "Mommy's beautiful!", if he's trying to get something he wants.  But our favorite and the longest lasting is "Beat your butt".  Now if you don't know Evan, I'm sure you've figured out by now that his speech can be a challenge for many to understand.  But for whatever reason, this comes out clear as a bell every single time he says it.  EVERYONE understands him when he says this; pastors, school principals, grandmas and aunts.  And he loves to tell people that he is going to Beat Your Butt.  Those that know Evan have fun with it.  We know it is, believe it or not, a term of endearment.  But try and explain that to the grocery check-out girl.

Lately, his new saying is "I'm Done!"  As in, "I'm done with haircuts!", "I'm done with school!" "I'm done with doctor!" and my personal favorite, "I'm done with Luke Bryan!".  (Aren't we all?)  Anytime he doesn't want to do something, anything, most things of late, he informs us, "I'm done!"  And like I eluded to, he is done with most things that involve any kind of work, stress ... or the music of Luke Bryan.  

And you know what? Lately, I'm done too.  I want to put myself in timeout, lock myself in the bathroom.  I want to stick my fingers in my ears and sing "La-la-la! I can't hear you!"  I want a permanent vacation.  I want to be the ostrich with her head stuck in the sand.  But unfortunately, life doesn't work that way.  

I want to be done with those things that hurt my baby who isn't so much of a baby or anywhere close to it anymore.  It's painful to see your child that was once stared at with smiles because his disabilities were cute now being stared at with trepidation and given a wide berth.  Is it because they don't want to risk speaking with someone they don't completely understand?  Maybe it's the struggle of how to explain special needs to their own gawking kids?  Or maybe they've seen the more unpredictable side of growing into an adult with special needs and don't want to be near that either?  It has been a pleasant surprise to see a couple of unexpected people connect with us.  I wonder if they're more understanding because they may have experienced the strain of finding a place of acceptance ... And it's a disappointment to see others become silent when I thought they would be my son's biggest champions.

So yes, I want to be done.  Done with the pain of seeing my son rejected.  Done with seeing him in physical pain.  Done with the pain that comes from those that I hoped knew better.

And as usual, God has something bigger for me to learn from the trials of this world ...  I am reminded of Christ's battle before and on the cross.  God the Father is very familiar with seeing his son rejected, in great physical pain and seeing those who fell away when the going got tough.  And if he didn't let Christ out of it, if he saw it was for the better good, (duh, Christ saved us with that big plan!) he must be seeing our much more minor trial is somehow for our betterment as well.  And Christ, after knowing it was his Father's will to continue to his sinless death, offered forgiveness to others.

I've said it before, I know God's plan is way better that whatever scheme I could set up. So, while I so badly want to be done, I guess I may as well settle in and let him do his work.  

Bible Verse I'm Loving Today:
Luke 22:42
“Father, if you are willing, take this cup from me; yet not my will, but yours be done.”
Song I'm Loving Today:
Done by The Band Perry  (Please enjoy the Perry brothers haircuts - or lack there of.)

Becoming Child-Like ...

Having a child with special needs has meant coming to terms with the fact that we will always have a "child".  Little by little we have had to make adjustments in our expectations.  You know, those things we Americans think our kids should be experiencing - team sports, youth groups, academic achievements ... true friendships.  We even have to make adjustments in the expectations we have in our own lives - date night (What's that? Oh, you mean without kids?), retirement (HA!), empty nest (We would be bored anyway).  We have made adjustments and are continually doing so, but the rest of the world, well, I think it's still having trouble adjusting.

As our boy has become more of a man in age and size, I am learning that the world's answer is to rid itself of those who are dependent.  I'm often asked where we will be "putting" Evan.  There are expectations from the rest of the world that just because our child has disabilities and just because he will be a certain age he will be pushed out of our home and into some sort of facility upon his birthday.  Some 'Happy Birthday', huh?  I know that everyone has a very different choice to make.  It's different and extremely personal reasons for the path they need to choose for their child.  So I am not sure why there is an assumption that we will be choosing to move our son out upon a birthday or any sign of stress in our daily routine.  

Schools have no other choice but to automatically fast-track all children with disability into the one and only local special needs workplace, even though this may or may not be an appropriate place for the child.  (Thankfully, for some, there is at least this option.)  A doctor that didn't personally know us gave us the option of putting him in a psychiatric hospital.  I wanted so badly to say, "What?!!!  Putting someone with disabilities in a psychiatric hospital is still a thing?!!!".  Obviously, the world's answer seems to be to rid themselves of the adult that behaves like a child.  An adult child that will always be in need of parenting is seen as a burden to the world.  

But what I am learning from my dependent son is so much better than what the world has to offer.  He is teaching me that becoming like a child is exactly what Christ has been asking of us all along.  

I've just started reading Paul Miller's, A Praying Life.  In it he refers often to becoming child-like in our prayer life.  He also has an adult child with special needs and so far this book is really hitting me where I live.  I used to be so jealous of people who could pray eloquently in public settings.  I get nervous, fumble my words and am lucky to get a public prayer out of my mouth without breaking out in a sweat, my hands falling asleep or almost passing out.  But lately I find myself not being jealous of the wordy prayers but learning to pray in a more child-like manor like my Evan.  He is so honest in his prayers.  He prays for his friends, his brothers and family and his favorite things that are of little monetary value.  He almost never prays for himself or a physical need he may have.  Paul Miller says in his book that our prayer life reveals our heart.  Evan's prayers reveal a heart for others and okay, ... his 'cards bags'.  But as for becoming child-like, Evan is already there.  He is honest like a child.  He is blunt like a child.  He is emotional like a child.  My prayers reveal a heart for mostly myself.  I am not always honest, with myself or God (like I can hide things from Him!), I am often too wordy (Um, blogging speaks to that, I think), and though not always successful, I work really hard to keep my emotions in check at ALL times.  As for me becoming child-like ... I've got a ways to go.

So on my quest to becoming more child-like, why on Earth would I want to rid my home of the real-life example God has blessed me with in Evan?  Jesus says in Mark 10:14-15 that if we don't receive the kingdom of God like a child then we shall not enter it.  It can be kindof a confusing Bible verse -- unless you know Evan.

Bible Verse I'm Loving Today:
Mark 10:14-15
“Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these.15Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.”

Song I'm Loving Today:

Not Understood, Doesn't Mean He Doesn't Understand

Evan's favorite thing in the world is to be with other people and to talk to other people.

 This can be really difficult for his anti-social, introvert mom.  But he drags literally drags me everywhere to talk to EVERYONE.  So one of the most frustrating things about special needs and disability in our house is communication.  Or rather the lack of intelligible communication.  For the most part we understand what our Evan is trying to communicate to us.  And if others spend any amount of time with him they soon will figure out his words as well.  He has about five subjects that he loves, MarioKart, ApplesToApples, his Cards Bags (Reusable Grocery Bags), a rotating selection of Pixar Movies, and asking what others are going to do today.  His questions are almost always the same and revolve around those things.  Every so often he has some new experiences that introduce new words and we really struggle with figuring out what he is saying.  We pray some desperate prayers to God to help us be better translators.  It is so heart-breaking to look in Evan's eyes when we don't understand.  He says a word so clearly in his mind and we just can't get it.  What can hurt even more is when other people say things like, "I can't understand a things he says", all within ear-shot or even right in front of Evan. We don't say this to those who speak a foreign language.  So why is it acceptable to say about someone with special needs? It hurts enough when he isn't there.  But they don't see the look in his eyes that I do.  

Just because he isn't understood, doesn't mean he doesn't understand.

Another frustrating thing is illness.  Most moms can tell when something isn't right with their kids.  But a special needs mom KNOWS immediately when something is off.  Let the anxiety begin!  We start with the questions.  We are masters of the Yes/No questions.  Is your blood sugar low?  Is your blood sugar high?  Do you feel shaky?  Does your head hurt on the top above your eyes?  Do your ears hurt on the inside?  Do you have a cold in your nose?  Do you have to breath with your mouth open?  Does your throat hurt?  No, not on the outside, on the inside where you swallow your food down?  Do you feel like you are going to puke?  Do you feel like you have to poop?  No, not normal poop.  Poop, like peeing out of your butt (coined by my eldest), running to the potty, poop?  Yes, these are the questions I have to ask.  Start at the top of the body and move down.  I usually get an honest answer.  Sometimes he even thinks he's funny and will make fake puke noises.

Just because he isn't understood, doesn't mean he doesn't understand.

I want so badly to understand my boy completely.  It hurts to not know how to best help him sometimes.  All of the "What Ifs" can be consuming for a special needs parent.  What if someone is hurting him?  I mean secretly, really hurting him.  What if someone is bullying him on a regular basis?  What if, What if, What if.  I do draw a little bit of comfort in knowing he mostly understands me when I ask him these basic questions.

Just because he isn't understood, doesn't mean he doesn't understand.

I have to trust in God's infinite wisdom during these times.  I don't know why he doesn't give us and others a complete understanding of my boy's language when he so badly wants to communicate.  I don't know why his health can be so precarious.  I don't know why there has to be such evil that can take advantage of the weak.  Sometimes I just don't understand why I can't be allowed to completely understand him ...

But I do know just because I don't understand my Creator's ways doesn't mean he doesn't understand me.

Bible Verse I'm Loving Today:
Isaiah 55:8-9

8For my thoughts are not your thoughts,

neither are your ways my ways, declares theLord.

9 For as the heavens are higher than the earth,

so are my ways higher than your ways

and my thoughts than your thoughts.

Song I'm Loving Today:

Ellen Seidman wrote a great post about her struggles with society's assumptions with her son's speech challenges.  I'm not sure if I had it in my subconscious when I wrote this, but if I did I wanted to give her credit.  You can read her post here.

They have no idea ...

There are nights after my husband and I get the boys into bed we look at each other and one of us will say, "They have no idea what we go through."  We are usually referring to something that occurred regarding disability or a medical need.  And it usually includes something pretty harrowing or disgusting for the average household.  (Or both, more on that later.)  But in our house, it's the norm.

During one of my late night blog writing sessions I couldn't sleep I was having a little pity party about no one knowing what we go through.  But the more I thought about it I realized that maybe no one knows what we go through but I have no idea what they go through either.

  My sister has always been waaaay smarter than me.  She is not just smarter than me, she is smarter than most people.  She works in a field that few can pronounce let alone understand.  I often have people ask me, "What is it again your sister does?"  What must it be like to deal with things that are so far above the average population, or below average in my case? (Don't argue, GPA's don't lie.)  It makes it difficult to talk to others about what she deals with during the day if no one can even understand what she does, I would guess.  I have no idea what she goes through.

My brother is a pastor.  He carries the spiritual, emotional and physical needs of so many people on his heart and mind.  He is bound by a promise to these people and God to keep these very private needs to himself.  I have no idea what he goes through.  And on a lighter note ... he minored in English in college.  Every time one of my blogs comes out he has the burden of reading it and knowing in his highly educated brain that I have absolutely no idea WHERE THE COMMAS GO!!  Yet, he keeps this burden to himself each time.  I have no idea what he goes through.

I sat in church last week, looked around at people I sit with every week and and thought  again, they have no idea what we go through.  There isn't anyone that knows when we get puked on five nights in a row because this is how my youngest deals with EVERYTHING.  Puking.  (More details to come).  Or when we've been up checking blood sugar several times a night for nights on end.  Or the Target incident.  (Wait for it.)   I started looking at my fellow church members and wondered if they have the same thoughts.  The people who come without spouses ... Those few public school boys are dealing with very difficult temptations; drinking, drugs, porn ... The older lady sitting next to me who has slept through most of the service ... I have no idea what any of them are truly going through.

"The Target Incident" as it will forever be referred to in our house ... Target.  It is almost the only place on the planet we ever go as a family.  Shopping, Friday night entertainment, it is it.  And by Friday night entertainment, what I mean is WE ARE THE ENTERTAINMENT!  On this particular Friday night my boys were having a grand ole' time together, which is kindof new and exciting.  I'll skip to the fun ... our youngest is puking (refer to above paragraph about his puke response to everything), I mean more puke than I knew could be in his tiny body puking, all over him and me and the floor.  Evan, our man/boy with intellectual disabilities, thinks this is somehow his fault.  No matter how hard we try we cannot make him understand he had nothing to do with it and everything is okay.  He starts crying and it leads to his violent meltdown.  Here we go again ... and I'm still in a heap of puke.  Yep, the entertainment.  Did I mention we were in the farthest location in the store from any exit?  That's always how it is, am I right?  I make may way to the front carrying the 4year old to tell them "Bio Hazard Clean up in aisle 599".  Both of us covered and dripping in puke.  So many stares.  Meanwhile, my husband is dealing with his own kind of "Come to Jesus" moment as he tries to find someone to get him out a back exit while he is being bloodied, pinched, bit, and beat to a pulp.  And praying they don't break any $5000.00 TVs on the way out either because this is the way the naive, young girl led them out the only back exit.  (Really, Target?  Only one rear exit?  Sounds fire hazard-ish.)  So no, there are very few people on the planet who have any idea what we go through.


But thankfully, for you and for me, there is a God that knows exactly what each one of us is going through.  He was also beaten and bloodied.  His beat down was so much worse than what my husband and I go through during a special needs violent rage.  And it was because of my sin.  When my son has a meltdown one of the things I think of is Christ's words upon the cross, "Father, forgive them.  For they do not know what they are doing."  My son has no idea what he is doing or how to stop himself.  We have to wait for it to subside.  How often does God wait for me, I wonder?  

And I am so thankful that I know a God who does know exactly what you and I are going through. 

Bible Verse I'm Loving Today:
Lamentations 3:22

Song I'm Loving Today:

Passion - Come As You Are ft. Crowder

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The Best Medicine ...

Laughter.  We've all heard it's the best medicine.  I'm beginning to believe it's true.  

Just yesterday I was informed of an old high school friend's mom's passing.  I haven't seen the friend in years and it's been even longer since I've seen her mom.  You know how it is.  Little by little you see them less and less.  Before you know it you haven't seen them in years.  All my memories of my friend's mom include her laughter.  She was always laughing.  I remember being in their living room doing our own thing and hearing her in the other room laughing.  She would laugh at us and our stupidity.  She was just so full of joy.  I can picture her right now standing in their kitchen laughing hysterically.   I mentioned this to her niece and she said the same of her.  She had this reputation of always laughing.  She even had a nickname because of her distinct laughter.  What a great way to be able to remember someone.  Their laughter.  

Lately, we have been missing the laughter from one of my sons.  While he has disabilities he has always been known for his joy and laughter.  Disability has never been disabling to his joy for life.  His smile has always brought others joy as well.  Just like a good high school friend, little by little his laughter left us.  We didn't know we were missing it until one day it was gone.  How did we get here and how do we get back?  I've been singing in my head a song by Lucinda Williams called Joy.  "You took my joy, I want it back."

It's so hard to see someone hurting, especially our kids.  I just want to be able to fix it; to magically snap my fingers or wiggle my nose like Samantha in the old TV show Bewitched and it's all better.  If you watched that show you'll remember that even Samantha somehow always messed it up.  She had to live it out, sometimes go through the pain, to make it right in the end.  So that's what we've had to do too.  Some trial and error.  Some tears and lots of prayer.  Thankfully, my boy is surrounded by a God so much more powerful than any witch with a twitchy nose.

A few nights ago my husband and I were outside in the yard with the boys.  We heard laughter.  That genuine, belly laugh that is so contagious it makes everyone around it smile.  My husband said, "Man, it's good to hear that again."  Our boy was laughing at something his little brother had done.  Or maybe it was the dogs.  It didn't matter ... 

My Joy is back.

Bible Verse I'm Loving Today:
Proverbs 17:22
"A cheerful heart is good medicine, but a crushed spirit dries up the bones."