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.)

Fashion Doesn't Take A Day Off ...

So I was reading one of my new favorite fashion blogs, ONE little MOMMA, and I thought, "I NEED to be a fashion blogger!"  Seriously, she even writes on one of her pages that if people want to send her their stuff they can.  She, of course, will pre-approve whether or not she wants to write about it in her blog.  So people are basically sending her free stuff just in hopes that she will write about it to get their stuff advertised out there to the masses.  Wow.  So I have decided to stop writing about special needs and disability and start my fashion blogging.  Because #1: I know sooo much zilch about fashion, #2: What the world really needs is more fashion bloggers sarcasm, and #3: I really just want people to send me free stuff not sarcasm. 

Some time ago my husband was admiring my #OOTD.  That's fashion world secret code for Outfit Of The Day.  He said, "Fashion doesn't take a day off."  But what he really meant was, "Will you be putting something else on before someone sees you?"  Because pretty much, I wear the same thing every day ~ Nike jogging shorts and some form of hand-me-down t-shirt that I may or may not have slept in.  In the winter I just add a sweatshirt, hand-me-down soccer pants and some UGG boots to that sweet ensemble.  Can't you just envision the young fashionistas rushing to my website to check out my #OOTD?  All the young women of the next generation that I could be influencing!  Yeah, this right here may be the main reason God gave me boys.

One of the other awesome things I've found in the fashion blogging world is companies will throw fabulous blogger parties at their place of business just to get the bloggers to showcase their business. How do I get in on this?!!  I would gladly spend a long weekend at the StitchFix warehouse and get pampered by them only to come back home to tell all ten of you readers about how StitchFix did my hair, dressed me up, gave me delicious food to eat, toured the city, all while I slept in a hotel room by myself, taking a shower without interruption, without taking blood sugar all night, or getting puked on once! Sign me up!  I have heard of StitchFix in the past but recently it has become really appealing.  There was a time going to the mall and spending hours wandering from store to store searching for the perfect piece of clothing was my dream come true.  Now, I can't think of anything worse.  Having someone else pick out a shirt for me, ship it to me and all I have to do is mindlessly put it on sounds pretty good about now.  If you've tuned into previous blogs you know that it's been difficult to even get to Target. Whoops,I almost slipped into writing about special needs there for a moment.  I forgot.  I am now a fashion blogger!!  Here is me in my usual #OOTD.  Young girls, don't all rush to get yourself an outfit just like mine.  Seriously, don't.

Oh, and the #1 reason I will never be an actual fashion blogger: Selphies.  They make me feel like more of a moron than I already do on an everyday basis.  How do real fashion bloggers take so many pictures of themselves in the mirror and not feel like a blooming idiot?

Bible Verse I'm Loving Today:
Philippians 4:8

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

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.

The Cost of Fostering & Adoption ... (Part 2)

Okay, Part 2.  In Part 1 I focused on the actual dollar amounts of international and private domestic adoption and how these were so limiting to us that they led us to adoption through foster parenting.  In Part 2 I'll let you in on a secret.  Little did we know, the 'cost' of this path would be our hearts breaking for people that we so badly wanted to know the changing love of Jesus.  On our path we learned some other things about fostering. I hope it helps you ...

If you go into your local foster system with the intent of only adoption and not fostering first, you could be in for a long wait.  All children in foster care have been affected by an unfortunate situation.  Some more so than others.  But with the love of a stable home, a knowledgable, professional team and the guiding hand of God, you will be surprised how a child (and you as a parent) will succeed through those situations.

Yes, there are children all across the U.S that are available for adoption and in need of a home right now.  AdoptUSKids is a great place to start especially if you have a home study completed.  Many of these children have special needs or have requests that they will remain the youngest child in the family.  Since our family already had a child with special needs that whatever his age would always be 'the youngest' in cognitive age and in physical need we didn't think the children on this site would be best placed with our family. 

So into the foster parent world we jumped ... or at least waded into the baby pool of foster parenting:  Respite Care.  It's kindof like overnight babysitting for other foster parents. Occasionally foster families need to do things out of their state; funerals or weddings, that their foster children don't have permission to attend.  Leaving their home state can sometimes be tricky and need a judge's approval.  To please everyone another foster family can care for the child during this period.  It's usually just a few days or a weekend.  This is actually my advice as a great place to start for anyone with biological children.  If you aren't sure what child or sibling group would be best for your family respite care gives you a way to have children spend time with your family.  It really helped us narrow down an age group that was the right fit for our family.  This also gave us opportunities with our children and extended family and friends to open up the foster family dialogue.  With our children those talks could get really personal.  With the others it was a chance to let everyone know we were serious.  Yes, this was actually happening.

Now let me speak to the women, the wives, the mom's out there.  Ladies, God gave us husbands for oodles of reasons.  Yes, sometimes they think they are "God's gift to women", but when it comes to being a foster parent, let your husband be the brakes.  Once you are an official foster parent the phone will start ringing immediately.  It will not stop ringing with available children.  There is a desperate need for good foster homes.  Our mothering hearts will break for every single child that needs a mother and a good, safe home.  Mine did and still does.  Every day.  If I did not tell the social worker I had to first check with my husband I would have said yes to every one of them and I would have at least ten children in my home right now.  Ugh.  Keep in mind, the child will have weekly meetings with their biological family that you will have to take them to and possibly stay with them during those meetings, also courts dates, meetings with lawyers and social workers, appointments with therapists and doctors and this is in addition to their typical childhood stuff that you will want to give them like school and church activities, and a semi-normal family life at the same time.  My husband knew when a child was not a good fit for our family.  He listened with his head, not his heart.  Rely on the wisdom God is giving him however much it hurts to say no.

The other difficult piece of fostering is this:  The first goal is almost always for the child to be reunited with the biological parents or a kinship placement, such as a grandparent.  I can almost hear your thoughts from here.  "Whaat?!  No one told us this!"  You're thinking that brings your adoption chances waaaay down, doesn't it?  No.  That brings your reliance on God's plan waaaay up.  This is not always the end result.  You just have to look at our family to know the first plan isn't always the last plan.  But remember, you are not entering the foster parent world for your benefit.  You will be involved with a team of people that is trying to do what is best for the child.  I cannot count the number of times I have been asked "What if you have to send a child back to an unhealthy situation?".  No, it's not easy.  You may only have a moment in a child's life to give the love to them that Jesus freely gives to everyone.  And I will tell you even as an Emergency Placement Foster Parent, sending a child to another perfectly wonderful foster family is also one of the most difficult things.  

Foster parenting is not easy.  It's not without tears.  It will cost you a huge piece of your heart.  But I think we all know, the things that are worth the most in life usually cost the most.

Bible Verse I'm Loving Today:
Matthew 5:14-16
Song I'm Loving Today:

If you have a little more time watch this extended version that explains the story behind the "Do Something" song.  Really makes you want to go 'do something'...