THE LONELY SIDE OF DIFFERENT

Kindergarten.

It was a point in the future that we worked toward.

It was a point in the future that we focused on.

It was a point in the future that that held hope just out of arms reach.

“It will be worth it.”

That’s what I used to tell myself as I drove Miles to and from therapy everyday.

That’s what I used to remind myself on the really, really tough days.

“If I can muster up enough energy and keep focused, by the time Miles hits Kindergarten, all of the time and hard work will all be worth it.”

Miles started school in August and I thought I was ready.

Registering Miles for Kindergarten was about a four month process.  A process that consisted of evaluations, testing, paperwork, and several meetings.  A process that I had spent about a year preparing for by reading books, taking classes, and meeting with other moms and special education advocates.  I was organized, I had a little more than a vague understanding of the law and Miles’ rights, and I really thought I was ready.

After our final meeting, it appeared that all we had worked toward and focused on didn’t produce the results we hoped for.  Miles started school in August in the lowest functioning classroom our public school system offers and, as it turns out, I was nowhere near ready. 

The whole process is mentally and emotionally draining.

I have to think different and do different because Miles is different.

I have grieved many of those differences and I’ve come to appreciate his uniqueness.

But different is hard.

Different is lonely.

Out of 500+ students in Miles’ school, there are seven that are in the special education classroom.  Seven.  Which means out of 500+ moms, I am one of seven that are different.  And that difference is felt in very unexpected ways.

Take after-school, for instance.  Miles’ class is released from school about 15 minutes early to avoid the after-school noise and chaos.  Since parents have already started lining up in car-line, there is no way for me to get in the parking lot.  I have to ignore the two big ONE WAY and DO NOT ENTER signs, pull in the parking lot and walk into the school with all eyes on me.  Now, I am a rule-follower by nature and so I already feel uncomfortable.  But, I’ve been flipped off, yelled at, and given dirty looks several times by other moms leaving the school and irritated that I’m going the wrong way.

I want to respond.

I want to explain.

But I don’t.

And then there was Parent Seminar night.  About a month into the school year, the school planned a parent night after the PTA meeting.  The purpose was to provide sessions for parents to see what happens in the classroom.  It is an opportunity to learn, give input, and ask questions.  I was so excited.  Miles isn’t able to tell me about his day so to say that I was thrilled to get a glimpse into his class and into his world would be an understatement.

I read and reread the flyer, flipping it from front to back several times.  I see opportunities for every grade.  I see opportunities for several different subjects.  I see opportunities for training.  But something is missing.  Miles’ class isn’t represented anywhere.  So I start looking for his teacher’s name to try and piece together what is going on.  I find her name and immediately become deflated.  Miles’ teacher was given the task of “Children’s Entertainment” that night, along with two others.  They were to provide activities for children whose parents were attending the different sessions offered.

I don’t even have words to describe how horrible that made this one of seven feel.  My eyes are full of tears just remembering it.  To give my son’s teacher the task of babysitter on a Parent Seminar night is to say that my child’s education isn’t as important as the typical child’s “entertainment.”  I am certain that wasn’t the message Miles’ school intended on communicating, but it was the message I received loud and clear. 

It’s been seven months.

Seven months and I’m still struggling.

This is only our first year of school and the thought of going through this process over and over every year is more than my brain can handle.  It's hard and I'm tired.

The unfortunate reality is if you don’t fit the mold, you simply don’t fit.

My biggest struggle this year is not that Miles is different, it’s that I’m different.

I know God doesn’t make mistakes.

I love that He made our family different.

But sometimes, different is just hard.

I see you posting videos of your child in their school program and I get jealous…

Miles wasn’t given that opportunity this year.

I see you posting pictures of your child with their friends and I get sad…

Miles doesn’t have a single friend.

I see you posting while at your child’s practices and games and I grieve…

Miles isn’t able to participate.

But I think watching the way you get to experience life along side other families is the hardest and loneliest part of our reality.  That's were new friendships are formed and current friendships are strengthened.  And I miss that.

But I’m learning.

I’m learning that different is an invitation.

Different is the space that God has me all to Himself.

It’s where He whispers.

It’s where He dwells.

It’s where He breathes life into my soul with words like…

“So we’re not giving up. How could we!

Even though on the outside it often looks like things are falling apart on us,

on the inside, where God is making new life,

not a day goes by without his unfolding grace.

We have small troubles for a while now,

but these troubles are helping us gain an eternal glory.

That eternal glory is much greater than our troubles.”

{2 Corinthians 4:16-17}

He reminds me that there is purpose in the hard stuff.

It reveals my weaknesses and it allows His glory to shine.

"Remember, our Message is not about ourselves; we’re proclaiming Jesus Christ, the Master.  All we are is messengers, errand runners from Jesus for you.  It started when God said, “Light up the darkness!” and our lives filled up with light as we saw and understood God in the face of Christ, all bright and beautiful.  If you only look at us, you might well miss the brightness.  We carry this precious Message around in the unadorned clay pots of our ordinary lives.  That’s to prevent anyone from confusing God’s incomparable power with us.  As it is, there’s not much chance of that.  You know for yourselves that we’re not much to look at."

{2 Corinthians 4:5-7}

Sometimes God permits me, an unadorned clay pot, to be jarred so that some of the treasure in me will spill out and bless others.  But when I get bumped or jarred, I forget.  I tend to focus on me and I quickly forget that there is purpose in the hard and difficult.  If others are going to get a splash of love, grace and mercy every time I get bumped, I have to make time every day to empty myself of me.  If Jesus is going to spill out of me, I need to be full of Jesus.

I am not the me I was before Miles, and sometimes I miss me.

But if different is what brings God glory, than different I will be.

POTTY TRAINING: SAFETY HELMET REQUIRED

Potty training.
It's the worst.

We have spent the last several months getting Miles used to the bathroom, the idea of sitting on the potty, and observing his potty habits.  In the world of Autism, they call this desensitization and collecting data.  

Knowing it will take several months to master this new skill, we decided to start now in hopes that Miles will be fully trained before starting Kindergarten in the fall. *fingers crossed*

Potty training a child with Autism, zero self-care skills, and delayed receptive/expressive language skills is hard.  And hilarious!

Here are things I never thought I'd have to say to another human being...

"Don't put your head in the toilet."
"Oh dear, you gave yourself a swirly. Let mommy dry off your hair."
"Squeezing your penis like that won't make the pee come out."
"Hey buddy, sit up and don't lick the toilet."
"Please stand still. You just hit mommy in the face with your penis."

All actual phrases... said by me... this week... more than once.

After a week of potty training, Miles will pee pee in the potty when we take him, but will not initiate going on his own.  We knew that would be our biggest hurdle and may not be something he's capable of at this time.

But then again, maybe he's starting to come around.

Keith and I attended a class on Potty Training Children with Autism a couple of nights ago.  After class, we grabbed some dinner and went home to put Miles to bed.  I took Miles to the bathroom while Keith got his sleep medicine ready.  We decided to let him play a little bit before we put his pajamas on because, well, we ate Mexican food for dinner and we both had to... go.

After finishing up in the bathroom and changing into my pajamas, I went to find Miles to finish getting him ready for bed.  Keith, still occupying the front bathroom, yelled my name as I walked down the hall.  Stopping to see what he wanted, Keith tells me something I can only pray I never, ever have to say...

"Miles just walked into the bathroom, yelled 'POOP,' and threw a turd at me."
"The poop ball hit me in the chest, I trapped it with my arm and flushed it."
Then, in case I missed it the first time, he repeats, "HE HIT ME WITH A TURD!"

I laughed.  And laughed.  And laughed until I cried.

The irony.
Getting poop thrown at you while you are going poop.

It still makes me laugh every time I think about it.

That is not exactly the initiating we were looking for, but it does give me a glimmer of hope.  In a weird way, I am thankful that Miles made the connection that poo poo goes in the potty.  It is one gross step in the right direction.

Potty training.
It may be the worst but it has given us some of the best laughs!

And until further notice, if you need to use one of our bathrooms, please wear the provided safety helmet and watch out for flying balls of poop.

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intend(ed)

And just like that, he's five.
Happy Birthday sweet Miles.

In five short years, you have changed my world.

Because of you, I learned to speak the languages of adoption and special needs.
Because of you, I see the world through completely different lenses.
Because of you, I have meet some of the most precious families who serve their children with special needs without abandon.  They love with such a fierce sacrificial love, it is like getting a glimpse of Jesus with skin on.

Because of you, I will never be the same again, and I am forever grateful!

I was hoping that by the time Miles turned five I would understand him better.

Instead, God has been teaching me to understand Him better.

God has been so gracious to give me a glimpse of how He sees disability.

As Jesus went on His way, He saw a man who had been born blind.

His followers asked Him, "Teacher, whose sin made this man to be born blind?

Was it the sin of this man or the sin of his parents?"  Jesus answered,

"The sin of this man or the sin of his parents did not make him to be born blind.

He was born blind so the work of God would be seen in him.

We must keep on doing the work of Him who sent Me while it is day.

Night is coming when no man can work.

While I am in the world, I am the Light of the world."

{John 9:1-5}

A man.

Born blind.

People walked by him every single day for years.
He could not see them and my guess is a lot of them acted like they didn't see him.

But Jesus.

He could not see Jesus, but Jesus saw him.
He saw him!
He saw who he was designed, purposed, planned, and intended to be!

A man.

Born blind.

Born with a disability so the power of God could be [seen, displayed, illustrated] in him. So the glory of God could be displayed through him.

God has a purpose in disability.

He allows it and sometimes even authors it.

“There is no circumstance, no trouble, no testing, that can ever touch me until, first of all, it has gone past God and past Christ, right through to me. If it has come that far, it has come with a great purpose."

-Alan Redpath

I've never doubted that God has a purpose for Miles.

But this year, God has changed my word from purpose to intended.

in-tend

(1) to have in mind for a particular use
(2) to design or mean for a specific purpose
(3) to have a purpose or design
(4) to destine

Miles is exactly how God intended.
God has a particular use in mind for Miles and the gift of Autism allows His glory to shine in a way that Miles without Autism cannot.  It magnifies the glory of God in the most beautiful way.

"I have thanked thee a thousand times for my roses, but not once for my thorn.  I have been looking forward to a world where I shall get compensation for my cross, but I have never thought of my cross as itself a present glory.  Thou divine Love, whose human path has been perfected through sufferings, teach me the glory of my cross and the value of my thorn."

-George Matheson

A man.
Born blind.

He lived in complete darkness all of his life and one day, one encounter with Jesus, light cuts into the darkness.  God used a man who was born blind to show us our need for Jesus.  Our need for the Light of the world.

You and me.
Born blind.

We are all broken and born with a disability called sin (Romans 3:23).
But Jesus sees us.  Really sees us.
And because of the finished work of Jesus on the Cross, we have the opportunity to be be healed.  To have our blind eyes opened by the Light of the world.

No one goes unnoticed by Jesus.  No one!
His love, grace and mercy is available to you and me.

You don't have to have it all together.
You don't have to have all the answers.
Jesus already knows you are broken and wants to make you whole.

Jesus is asking you the same question He asked the blind man…
"Do you believe in the Son of Man?"

"For if you tell others with your own mouth that Jesus Christ is your Lord and believe in your own heart that God has raised him from the dead, you will be saved.  For it is by believing in his heart that a man becomes right with God; and with his mouth tells others of his faith, confirming his salvation."

{Romans 10:9-10}

Jesus, the Light of the world, wants to shine in and through your life.
Sin has made you blind to Jesus, but it has not made Jesus blind to you!

If you, like the blind man, have already declared "Lord, I believe",
What challenges are going on right now in your life?
What has God allowed that He has a particular use in mind?
What has He intended that will magnify the glory of God through your life in the most beautiful way?

Do you trust Him?

The best thing you can do is spend less time trying to understand your situation and more time getting to know the God that designs, purposes, plans, and intends to use your situation to reveal His power and His glory.

"We are confident that God is able to orchestrate everything to work toward something good and beautiful when we love Him accept His invitation to live according to His plan."

{Romans 8:28}

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IT'S MORE THAN JUST BASEBALL

The Miracle League of Arkansas.

Their mission is to provide opportunities for all children to be able to play baseball regardless of their ability.  But, it is so much more than that!

Miles played his first baseball game this morning and it may be the happiest I've ever seen him.  It was such a good reminder that every child deserves the opportunity to be cheered on.  To be celebrated!

Because of organizations like The Miracle League…

...Miles gets to be part of a team.

…Miles gets to wear a batting helmet when he plays outfield for no other reason than he wants to.

 …Miles gets to randomly lay down on the first base line when his team is up to bat.

 …Miles gets to hit the ball off the tee backwards and still run the bases.

…Miles, along with all the buddies and players, get to line up to sing 'Take Me Out to the Ballgame' when the game is over.

…Miles gets to be Miles.

The Miracle League.

It truly is more than just baseball!

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CHILDREN: SUPERHEROES IN DISGUISE

There is a superhero inside each one of us.

A hero ready to unleash his/her power.

Take Clark Kent, for instance.

He is a mild-mannered reporter for the Daily Planet.

But his outward appearance has nothing to do with who he really is.

Underneath that starched button-down shirt and dark rimmed glasses is a superhero.

He's faster than a speeding bullet.

He's more powerful than a locomotive.

He's able to leap tall buildings in a single bound.

He's Superman!

Would your parenting look any different if you saw your children through the lens of a future world changer or a superhero?  Want to know what the parent of a superhero looks like?  Look in the mirror.  There is greatness in our kids and as we love, train, and walk through life with them, we get to see little glimpses of their superpowers.

"We all have a hero in our heart."

{Dwight Schrute}

When I see Alex stick up for someone who is getting teased, I see a hero.

When I am told that he is respectful to adults, I see a hero.

When I watch him try and play with Miles, I see a hero.

Several weeks ago, I was told that a little boy in Miles' class at church started asking questions about why Miles is different.  Why Miles wears diapers.  The teacher told him that God made Miles special and that's when little Zach Rowe unleashed his superpower.  He asked if he could be Miles' special friend and, when he was told yes, he went over and very sweetly tried to play with Miles.  He is a hero.

Children with special needs have superpowers that don't look super to the untrained eye.  As their parents, we have the joy and privilege of seeing little glimpses of their special superpowers.  When they meet a new goal or accomplish even the smallest task, it's like they just saved the world from impending doom.

For example, when Miles comes home from school, his shirt is usually filthy.

It could be anything from dried yogurt, applesauce, spaghetti sauce or whatever was for lunch and snack that day.  Dribble some milk and juice down the front, then throw in a little marker and paint.  What you are left with looks like a complete mess.

You see, at 4 years old, Miles still struggles to use a spoon.  He forgets to hold it properly and food spills off.  He is also still trying to master drinking from an open cup and often forgets that he can't turn it sideways or upside down.

The me before Miles would have changed his shirt the minute we got home and I definitely would have not taken him to church wearing a dirty, crusty shirt.

But now, I proudly leave his shirt on because I don't see a dirty shirt.
I see learning.
I see hard work.
I see determination.
I see a superhero trying to reveal himself the best way he can.

Another area that is a struggle for Miles is his self-care skills.  He has been working on washing his hands everyday for the last two years.  With the use of picture cards, words, and assistance, it is still a struggle.  And yesterday, Miles followed a one step direction, walked to the sink and turned the water all by himself.  That sink has been his nemesis for the last two years and he kicked its booty!

I was one proud mama.
For the rest of the day, I told everyone I saw "my baby walked straight up to that sink and turned on that water!"  I was beside myself!  So proud!

My little superhero didn't give up.
He didn't run away.
He faced that challenge head on and showed that sink who's boss!

Most of us don't know what it's like to live in a world where using words to get basic needs met is a huge struggle. Or when you can't get your arms and legs to do what you want them to do, what they were designed to do.  These special superheroes live in bodies that have them locked up, making it difficult for others to see them for who they really are.  For who they were created to be.  They have the ability to do amazing things, but they are limited.  They have the same feelings, same emotions, same desires, same need for love and affection that each of us have, they are just trapped.

I was reminded this week that Jesus knows exactly what that feels like.  In week 10 of Beth Moore's A Woman's Heart, God's Dwelling Place, she is teaching that Jesus is the true Tabernacle and had this to say...

"And the Word (Christ) became a human being and lived here on earth among us (John 1:14).  Can you imagine the excruciating transformation of going from having absolutely no limitations to being imprisoned inside about 170 pounds of human flesh?  How many times do you suppose He would have liked to burst out of that tent and to unleash His awesome power?  We have nothing with which to compare the confinement of omnipotent, omniscient, and omnipresent God in flesh... His flesh was a temporary dwelling, a seemingly unfit place for God's Son to dwell...  His exterior did not seem to match His interior."

My eyes immediately filled with tears.
Jesus, God in flesh, knows EXACTLY what it's like to be locked up in a human body.
He understands how your child with special needs feels in a way that we never will.
Simply amazing and completely overwhelming!

God, give me eyes to see my boys, not as they are today, but as the superheroes You have created, designed, and purposed them to be.  Help me to love them, respond to them, train them and even discipline them in a way that gives them an accurate view of Your love and Your character.  Help me to not get in the way of Your work in their lives. I pray that all of my interactions with them will be filled with grace, love, and mercy.

You are enough for me, Jesus!

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JESUS LOVE

This kid.
He amazes me.
I want to be like him when I grow up.

I'm not suppose to Blog, Facebook, Tweet or Instagram about him.
Supposedly that's embarrassing.
But his heart is too sweet not to share.

The last three years haven't been easy for any of us.
Especially him.
Having a little brother with special needs is tough stuff.
Especially when he is as violent as Miles is.

But he takes it.
He loves him.

The love that Alex has for his little brother is a love that can only come from Christ.
It is selfless and unconditional.

When we told Alex about Miles' diagnosis and explained what that might look long term, his reply shocked me.

We let him ask questions and we tried our best to answer them.
He asked if Miles will be able to live on his own on day.
"I don't know," was about the only thing we knew to say.
I told him about the waivers that we are applying for that will help provide care when Miles is older and about the different things we will make sure are in place in case we aren't around to care for him.

Alex's reply...
"He's going to live with me."

His reply didn't just shock me, it left me speechless.

Obviously, Miles' future is uncertain.
Just like Alex's.
Just like mine.

But the fact that he would, without hesitation, decide that he is willing to share Miles' burden, completely and utterly blows my mind.

That is Jesus love.
Jesus love pouring out of my almost 14 year old and filling up this mama's heart.

"Share each other's burdens, and in this way obey the laws of Christ."

{Galatians 6:2}

TURNING CARTWHEELS

Today has been a really long day.

We are tired, worn out and our brains hurt.

But, I cannot go to bed tonight with out telling you about our day.

Well, mostly, I want to tell you how good, faithful and amazing God is.

I was reading last night and came across this quote in Katherine Koonce's book Parenting the way God Parent's along with a verse in Habakkuk...

"We are devoted to the Giver, not to His gifts. We must never confuse the two."

{Katherine Koonce}

You see, that is the history with me and God.

He is gentle with me.

He almost always goes before me and prepares me for the hard stuff.

The messy stuff.

The heavy stuff.

He knew that today, I would need to be reminded that he is God.

He knew that today, I would need to be reminded to joyfully praise Him.

He is so, so good to me.

And it doesn't stop there.

As I was laying down tonight with Miles, God reminded me of the prayers I started praying for Miles 4 months before I ever saw his face.  4 months before I heard his story.

Only God!

Only God could have lead me to pray 'connect everything in his brain the way it's suppose to be' everyday for Miles before he was even born.

And that brings us to today.
The day God had been preparing me for.

Miles had an evaluation at the Schmeiding Center today from 8:45am-5:30pm.
It was a long day and Miles struggled to stay engaged (which is normal).

After hours of testing, playing and interviews, Miles was given 2 different diagnosis.  The official labels are long and complicated sounding and you need those fancy letters after your name to really understand them. So, to keep things as simple as possible, here is our easy to understand version...

#1  Autistic. His autism is moderate to severe and he is considered low functioning.
#2  Mild Intellectual Disability.

The diagnosis is heavy.
There are parts we totally expected and parts that were a bit of a shock.

But when I try and think about and process all the information, I can't help but just thank God for loving me enough go before me and prepare me.  He is so faithful!

Life on this earth will always be messy.
Always!
Which is why it blows my mind to think that last night, the God of the universe, loved me enough to make sure that I remembered who I was to be devoted to and what my response was suppose to be today.

"...yet I will rejoice in the Lord; I will take joy in the God of my salvation.

God, the Lord, is my strength;..."

{Habakkuk 18-19a}

A DIFFERENT PERSPECTIVE

When I was younger, I hated reading.
Reading for fun was never something I thought I would enjoy.
But, the older I get, the more I love a good book.

I was talking to a couple of 'self-proclaimed nerd' friends this past week at dinner about a few book series that I have read recently and when I hesitantly confessed my secret love for dystopian books and even have crossed into the sci-fi realm, I was informed that I had officially achieved nerd status.

So there's that.
I'm a nerd.
A nerd who really, really loves a good story.

What I've found is that a good story, fiction or non-fiction, can bring clarity and a deeper understanding to topics that are hard, or messy, or just plain weird.  A good story is one that is not easily forgotten and often, for me, causes me to self-evaluate and gives a different perspective.

My heart was heavy this morning as I was praying for Miles.  He has an all day evaluation on Monday that we pray will give clarity and direction.  As I started to feel a little overwhelmed, God brought a story to my mind that I read years ago.  It is a story that was written by Emily Perl Kingsley in the late eighties that I sure most of you have read or heard.

In the simple and beautiful story, "Welcome to Holland", Mrs. Kingsley did an outstanding job at describing the hurt and disappointment we feel when our dreams or plans are completely derailed.

WELCOME TO HOLLAND

by:  Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans.
The Coliseum.  The Michelangelo David.  The gondolas in Venice.
You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say.
"What do you mean Holland??  I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.  The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.

It's just a different place.

So you must go out and buy new guide books.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It's just a different place.

It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills.... and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go.  That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.

Is there an area of your life that has been derailed or taken an unexpected detour?
Are you mourning the loss of a dream?

Give it to the Lord.
Ask Him for His perspective.
You might be surprised what He will show you.

"My thoughts are nothing like your thoughts," says the Lord.

"And my ways are far beyond anything you could imagine.  For just as the heavens are higher than the earth, so my ways are higher than your ways and my thoughts are higher than your thoughts."

{Isaiah 55:8-9}

ONE REMEMBERS, ONE CELEBRATES

Today is Miles' birthday.
Today Miles is four.
Four and still in diapers.

Is potty training in our future?

Nope.  Not yet.

Developmentally, he's just not ready.
His self-care skills are still too delayed.

I don't stress about it because, well, it is what it is.

But I get looks.
When I have to change him in a public restroom, I get the "that kid is WAY too big to be in diapers" look.  Which is completely understandable, especially since his legs are so long they actually hang off the end of those infant changing tables.

It doesn't bother me.
It's kind of true.

He does look to big to be in diapers.

And the taller he gets and the more he weighs, the more difficult changing him becomes.

And not just in public, it's hard even at home.

A couple of months ago, I was changing a nasty diaper that was completely filled from the front to the back.  You know the kind.  Well, since his core is still weak, he can't help lift his legs up, so I have to do it for him.  So, we were on the floor and I had both ankles with one hand, grabbing wipes and cleaning him with the other, and the nasty diaper off to the side.

He kicked his leg, freeing it loose from my grip, and his foot lands smack dab in the diaper.  He now has poop all over his foot, and still too much poop on his booty to be lowered down.  I grabbed his ankle and tried to clean his back off enough that I could lower him at least a little.  Miles, realizing he has something on his foot, starts rubbing both feet together.

So, now he has poop on both feet and he is still a mess.

I am starting to dry heave at this point because his feet are up by my face and I can smell it.  Like, really smell it!

I guess I had him in the air a little longer than he liked because he kicked his leg again.  Only this time, instead of his foot landing in the diaper, his poop smeared foot lands right on my face.

ON MY FACE!

Being a mom is hard.
And messy.
Real messy.

Today, as I celebrate Miles' birth, the messiness of parenting and the realness of adoption collide.  And my heart is heavy.

If you've never adopted, you might not fully understand.

With Alex,
I can tell him what it was like when I was pregnant.
I can tell him about the day he was born.
I can tell him who came to visit and how happy we were.

With Miles,
I've got nothing.
I don't know a single detail.

But that's not what weighs so heavy.
The weight comes from knowing that there is someone who does remember.
Someone who knows all of those details.
Someone who carried him for 9 months, heard his first cry, held him in her arms, and was still brave enough to make the decision to give him the chance at a different life.

I could never ever forget the day Alex was born.
I could never imagine having to make the choice that she made.
So today, I can't help but put myself in Fikirte's shoes.
And it's heavy.

Usually, the remembering is part of the celebrating.
But with adoption, she gets to remember and I get to celebrate.
And sometimes that just doesn't feel right.

Even though Miles isn't potty trained.
Even though we get 'looks'.
Even though I may get an occasional poop smeared foot to the face.
I get to be mommy to the little baby she named Misikir.

I get all the hugs.
I get all the kisses.
I get to tuck in him at night and hear him say cute words like norning (morning) and Minals (Miles) with the sweetest, softest little voice you've ever heard.

She gave me an amazing gift.
She gave life to the little boy that has forever changed my life.
I could never repay her.
I could never thank her enough.

So tonight, when I put Miles to bed, I gave him two kisses.
One kiss from the one who remembers.
One kiss from the one who celebrates.

Happy 4th Birthday, Miles Misikir.
I wouldn't want to the me before you.

LET'S TALK THERAPY...

I have learned so much in the last two years about a world I didn't even know existed.  The world of therapy.

Sure, I've heard of Physical and Speech therapy,
but Occupational, Developmental, Behavioral and Play therapy?
What the heck?

When words like sensory processing, vestibular and tactile system, expressive and receptive communication skills are being used and I have NO IDEA what they are talking about, I realized real quick that I need to get serious about educating myself.

So I did.
I am not an expert or a professional in any way.
I'm just a mom who has spent the last couple of years reading, researching and educating myself on how to best care for my son.

Here are some tips that helped me the last couple of years along with some links to some resources in Northwest Arkansas to save you a little time in case you are beginning this new journey.  Because each child's needs are so different, your journey will not look like ours, but hopefully you will be able to find one or two things that will help.

When you start down this road, you start welcoming a lot of people into your family to be part of your child's life.  To be a part of their story.  There will be a lot of opinions from great people who are experts in their fields.  Sometimes they will agree, sometimes they will not.  But, YOU are the expert on your child.  You are the one that God has entrusted to raise that child and you do not get to pass that responsibility on to someone else.

When I started putting Miles' team together, I organized it in my mind like a professional sports team.  I'm weird, I know, but it really helped me not lose focus on my role as Miles' mom.

Here is Miles' team...

• Owner - God
• General Manager - Parents
• Head Coach - Pediatrician
• Offensive/Defensive Coordinators - Neurodevelopmental Pediatrician, Child Psychiatrist, Child Psychologist, Eye Doctor, Audiologist, Attachment Counselor
• Special Teams Coaches - Speech Therapist, Occupational Therapist, Physical Therapist, Developmental Therapist
• Strength and Conditioning - Preschool teachers in a Day Habilitation Program
• Sponsors - Early Intervention, Insurance and TEFRA

God blessed Keith and I with two sons, Alex and Miles.
Each have unique personalities and gifts.
Each have a unique purpose and plan for their lives.
My job as the General Manager is to be in constant communication with the Owner.
To seek wisdom and knowledge in how to raise them and what decisions need to be made in order to fulfill God's plan for their lives, not mine.

As the General Manager, you have to be organized!  It is a must!  You will need to keep up with evaluations, yearly reevaluations, test results, goals, information on different programs, support groups, reading recommendations, and funding available.  Since a lot of testing Miles had done overlapped, it was helpful for me to keep all his info in one notebook and I took it to every meeting we had.  It can really hurry things along because you can let them make copies of your paperwork instead of them having to request it from all the other team members.

Here is Miles' therapy notebook...

The General Manager has to oversee all of the opinions and recommendations and continually take them before the Owner.  He will give you direction and perspective if you will be patient and wait on Him.  Don't force any doors open or close any doors, that is the Lord's job.

The Head Coach plays a very important role on your team.
This whole process starts with him/her, so it has to be someone that you trust!
They will refer your child for a therapy evaluation.
They will have to approve the therapies.
They have to sign off on everything!
And if you end up applying for any funding from the Sponsors, the Head Coach will be a part of that process also.

The Head Coach may refer you to some Offensive/Defensive Coordinators.
They have very specific training which is helpful in evaluating and assessing your child's strengths and abilities.  They are very good at helping you understand the issues your child is having and can provide a treatment plan as well as different resources in your area that can provide help and support.  Typically, any official diagnoses your child receives will come from them.

The Head Coach is also a great resource in helping you sift through all the different opinions, which is why I cannot stress enough how important it is to find a doctor that you know, love and trust.

Depending on how the evaluations are scored, you may be told bring in some Special Teams Coaches.  They bring to the team very specific goals they want your child to accomplish based on where he/she is developmentally.  Therapy is a slow process.  It is not a quick fix.  Be as hands on as they will let you.  All of our therapist were more than willing to teach us some things we could do at home to continue to help Miles.

Here are some of our new therapies that we do at home...

Picture cards to help with communication

Place mat to help with mealtime (love this!)

Benik vest for trunk support and to help calm him

Weighted blanket which helps with naps and bedtime

Astronaut board for Kawar Spinning Protocol to help his vestibular system (LOVE this!)

Some other things we have done at home are the Wilbarger Protocal (brushing/joint compressions), sign language, weighted vest, sensory bins, and incorporated a Sensory Diet.

In the fall, we added Strength and Conditioning professionals to our team.  Miles needed some extra help in the area of social skills, and since he wasn't ready for a preschool with typical functioning children, we enrolled him in a day habilitation program where his Strength and Conditioning teachers and his Special Teams Coaches work at the same school and work together on Miles goals.  Miles' teachers are trained special ed teachers and are so gifted in helping each child grow at their own pace.  They are true heroes!  There are a lot of 'therapy school' options out there and they are not for everyone.  You must do your homework.  You must tour and interview each one before making your decision.  You must know what your goals are for your child and how the school you choose will help get you closer to those goals.  This was the tough decision for us.  You are inviting someone into your child's life that will spend a lot of time with them, so please make sure the Owner is the one who directed you to take this step and has given you a peace about it.

So, how do you pay for all of this?
All of the coaches, coordinators and teachers cost money.
They work for you.
And that is were the Sponsors come in.

First, check with your insurance.  A lot of insurance companies cover therapy services.  Sometimes it is very limited, so make sure you understand what your insurance benefits are.

If your child needs more that one type of therapy, the state has several different programs designed to provide funding to help your child get the help they need.

Here are a few programs in Arkansas...
Early Intervention-EI (birth-36 months of age)
Early Intervention is a statewide funding program to assist any child under 3 that qualifies for therapy.  If you are going to try and qualify for EI funds, be sure and contact them before you begin the initial evaluation process because the paperwork must be signed before hand for the evaluation to be covered.  Not all therapy clinics accept EI funds, so be sure and ask before you set up your appointment.

Early Childhood-Coop (3-5 years of age)
The Early Childhood program serves preschool children from age 3 until the child is eligible for kindergarten.  Children must have more than one basic special education need to enter this program.  If your child is currently in the EI program, your coordinator will begin setting up transition conferences about 2 months before their 3rd birthday to help you make the move from EI to the Coop.

TEFRA (under 19 years of age)
TEFRA was developed to allow a child with disabilities living with a family with income that is too high to qualify for Medicaid to gain Medicaid eligibility based on income and resources of the child.  Parents whose annual income exceeds $25,000 will be required to pay a monthly premium to participate in the program.

We have used every one of the above programs.  EI paid for ALL of Miles' therapy services until his 3rd birthday.  8 hours of therapy a week for about 18 months.  That was a tremendous help!  We applied for TEFRA before Miles turned 3 so that when he no longer qualified for EI, TEFRA could kick in.  If you are planning on applying for TEFRA, it takes them FOREVER to process your application (at least 6 months), so keep that in mind when you apply.  Also, keep a copy of EVERYTHING you send TEFRA because they have been known to misplace applications.

Right now, Miles' therapy services and day habilitation are filed with our insurance and then whatever they won't pay, it gets filed through TEFRA.  All of the other things we have purchased (Benik vest, weighted vest, weighted blanket, etc.) we have had to pay out of pocket.  We have had to make a lot of sacrifices and budget for Miles' therapy items, but isn't that what being part of a family is all about?  For now, my clothes budget has been renamed Miles' therapy.  Maybe that's why I'm willing to work my tail off to help him grow, heal and learn.  The closer we get to meeting our goals, the closer I get to getting my clothing allowance back!  Just kidding... sort of.

Here are several links to resources that have been very helpful to us in learning about all the things that make Miles unique and different support we found in Northwest Arkansas...

BOOKS:
The Connected Child by Dr. Karyn Purvis
Gentling by William E. Krill
Beyond Consequences, Logic and Control by Heather Forbes
The Out of Sync Child by Carol Kranowitz
Sensational Kids by Lucy Jane Miller
Raising a Sensory Smart Child by Lindsey Biel
Praying Circles around your Children by Mark Batterson
Harry Potter (Books 1-7) by J.K. Rowling (my escape from real life :)

WEBSITES:
Empowered to Connect (click here to watch free videos by Dr. Purvis)
Jill Kuzma's Emotional Skills Sharing Site
Sensory Processing Disorder
Schmieding Developmental Center (developmental assessments in NWA)
NWA Center for Autism and Developmental Disabilities

COUNSELING:
The Joshua Center
John Brown University's CARE Clinic
Ozark Guidance Center

THERAPY:
Children's Therapy Team (occupational, speech, physical, developmental)
Jarvis Pediatric Therapy (occupational, physical)
Wendy Cassady Speech Pathology (speech)
Northwest Pediatric Therapy (speech)
Thera-Play Pediatrics (occupational, speech, physical)
Arkansas Child Care Services (occupational, physical, speech, developmental)
Ozark Guidance Center / Project Play

SCHOOL+THERAPY:
Benton County Sunshine School
The Elizabeth Richardson Center
Ozark Guidance Center
Early Childhood NWAESC
KIDS FIRST
Kids for the Future