The day nothing changed

Today is a day that nothing changed.  Sure, there were subtleties to the day that made it different from the one before, and the nuances of life’s movement were there.  But today, nothing changed.
I have to remind myself of that, because today, something inside of my mind changed.  

Today, a doctor wrote on her note pad “She has a diagnosis of cerebral palsy.”

It’s a simple little sentence.  Six words.  They didn’t change my life nor the life of my daughter, but in my mind, something shifted.

My daughter was born early and as a result of that and some other medical complexities, she had a brain bleed at birth.  When my husband and I were first introduced to her at 4.5 months old as we considered pursuing her adoption, this was explained to us. “She will one day be diagnosed with CP” the notes said.  She had post-hemmorragic hydrocephalus, and had really rough first months of life.  Even now as I write this she’s in the nursery hooked up to a ventilator and oxygen concentrator that helps her breathe through her tracheostomy tube, inserted right into her throat.  She’s eating through a feeding tube.  

She’s had a long road to get to our home, and still has many struggles in life to overcome.  Even though we KNEW that this day was coming and we would hear a neurologist say the words “cerebral palsy” to us, it still shook me a little.

“She seems so happy.”  “Are you SURE?”  “Doctors can be wrong sometimes.”  “Just wait and see what God does, he’s going to heal her brain!”  “But she looks so… normal.”

I’ve heard all of those statements in the last 4.5 months since we said “yes” and moved mountains to join our baby girl in a hospital several hours from our home.  Most were said in a loving tone, a hopeful tone, a tone that wanted us to agree with them and believe that they were right.

The thing is, nothing changed today.  She’s still “so happy.”  She’s still able to be healed.  She still looks “so… normal.”  And yet, we have a diagnosis that says there’s brain damage to an extent that it has caused neurological deficit in motor areas of the brain, and she will need assistance to meet whatever milestones she may meet in the future.

This isn’t a ‘sentence’ with the diagnosis. God is still good, even when things are hard, and His will is still what we seek.  It reminds me of Jesus’ response about a blind man when he said “He was born blind so that the works of God could be seen in his life.”  I cling to that story as if Jesus was speaking directly to us some days.  Six of our children have Down syndrome.  Now two have a primary diagnosis of cerebral palsy.

I had a little conversation with Jesus today. He did the talking to me, because I could only listen. It's as if he was saying…

“Him, and her, and him, and him, and her, and her, and her, and him… I see them all.  I know their struggles.  Some of their struggles are because of the environment that man put them in to.  But my Father will make all things work together for the good of the Kingdom.  God is going to be seen THROUGH that thing which the world sees as a deficit.  Some of them, the very making of their chromosomes has been crafted to be different, so that a different part of God could be seen.  Each and every person has strengths and weaknesses, areas that the Father has given more or less to each so that they can be a part of the Body of Christ.  No matter what strengths and weaknesses are more evident to others, my Father has given each person a gift that they will use to Glorify Him.  Their praises are heard, whether in eloquent and flawless music or in grunts and utterances of joy.  Every person has purpose, has meaning.  Every person is here to fulfill a role in The Church.  Don’t discount anyone based on what you can physically see.  My Father created them WHOLE.  Each was created so that the works of God could be seen in their lives.”  

I’m reminded that God’s plan is intact.  Our daughter didn’t change today.  Today, our daughter received a diagnosis, but through the eyes of God, today was a day that nothing changed.

Uncomfortable Christians

The devil has a lie that he would like everyone to buy in to: “When you accept the forgiveness of Jesus Christ, life turns to sunshine and rainbows, and you’ll never have another problem.  Just call out “JESUS!” and the Lord will send angels down to lift you off your feet and take away all the uncertainty, stress, financial concerns, and all of life’s troubles.”

From this one lie, more people look at the lives of struggling Christians and determine that they are the ones lying, and Christianity is nothing like what they thought it was going to be.  Surely if life should be perfect as a Christian, then the one suffering through cancer treatments, or the one who lost a child, or the people going through financial heartbreak after a long job loss... surely they bought in to a LIE.

Oh, wait, that’s not what the Bible says?  How about “take up your cross and follow me…”  or “there is no greater love than this, that a man would lay down his life for another…”  But those sound so...Uncomfortable.

And there we have it, the idea that Biblical Christianity is not necessarily about happiness and the easy road.  If you’re not convinced, spend a few minutes in the book of Job and you’ll get a better idea of how life as a Follower of God isn’t meant to be without trials.

Wait!  There’s MORE!  

Look at some verses like Galatians 5:13- 13 (“You, my brothers and sisters, were called to be free. But do not use your freedom to indulge the flesh; rather, serve one another humbly in love.”) and James 1:27 (“Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.”).  John 13:12-14 tells us about not only serving one another, but taking the lowest position to treat others better than ourselves-- just as Jesus gave by His example (“When he had finished washing their feet, he put on his clothes and returned to his place. “Do you understand what I have done for you?” he asked them. “You call me ‘Teacher’ and ‘Lord,’ and rightly so, for that is what I am. Now that I, your Lord and Teacher, have washed your feet, you also should wash one another’s feet.”)

The list goes on…

Matthew 23:11 (“The greatest among you will be your servant.”)

Matthew 20:26-28 (“Not so with you. Instead, whoever wants to become great among you must be your servant, and whoever wants to be first must be your slave— just as the Son of Man did not come to be served, but to serve, and to give his life as a ransom for many.”)

1 John 3:18 (“Dear children, let us not love with words or speech but with actions and in truth.”)

Romans 12:1 (“Therefore, I urge you, brothers and sisters, in view of God’s mercy, to offer your bodies as a living sacrifice, holy and pleasing to God—this is your true and proper worship.”)

I'm not trying to turn you off to the idea of Christianity, and to tell you that instead of sunshine and rainbows, it is really trials and tribulations, because that's really not it at all.  HOWEVER, if someone is looking at Christianity, they need to realize the Biblical worldview, not the lie that says that everything will be perfect.  By recognizing that life isn't perfect, we can also recognize that Christians are allowed to struggle, and it doesn't "disprove" their God.
The difference is... as a Christian, we have someone to call on during those trials, and we know that God will help us-- Not because we call out "JESUS!" and everything turns to beauty, but because we have faith in Jesus IN THE TRIALS.

But wait, this lifestyle that American Christians have bought in to is so different, still, from where we SHOULD be. It is by the EXAMPLE of Christians that the devil proliferates the lie of comfort.  It's because even committed Christians often buy in to the idea that "I can't do that, because it would be uncomfortable.  I can't go there because it would be uncomfortable.  I can't serve him because it would uncomfortable. I can't give that up because it would uncomfortable."  Not only that, but we project it on to our children as well, asking them to be the ones to hold the guilt for our resistance to God.  "I can't do that to my kids.  They deserve ______" Fill in the blank.  To have me home all the time, to get their favorite toys for Christmas, to have their own room, to have great vacations, to have me to themselves, to not endure any hardship, to live in a comfortable neighborhood, to attend a great school...  And we pass off our own displeasure with discomfort to our children.  Unfortunately, we also pass along the lie that says that CHRISTIANITY=COMFORT, and our children begin to buy in to it as well.  

How is it that we will use our freedom to humbly love, we will have pure and faultless religion as we look after orphans and widows, and we will act as the lowest servants to care for the every need of those around us?  Will we become the servant of others, and be a slave just as Jesus came to serve?  Do we love in actions, and offer our body as a living sacrifice of worship?  Do we need to lay down our comfort zones and begin living even in the “hard stuff” that God calls us to do because we call ourselves according to Jesus’ name as CHRISTians?

I truly believe that God is calling.  He is calling Christians to step up.  To serve.  To love.  To step out of our comfort zone and practice what Christianity started out as…  Not the satisfaction of an easy and uncomplicated life.

No, we are called to be UNCOMFORTABLE CHRISTIANS.  We are also called to bring our children up not to expect comfort and silver platters, but to respect the role of the servant, and to desire to serve with the same satisfaction in the uncomfortable as we are living examples of!

What he didn't know about me

Tonight I left the house at 7:15 to go to the grocery store. I drove past the store where you pay 25 cents for a cart and you bag your own groceries. I drove past the store where you can buy everything from clothing to lawn chemicals as well as your meat and potatoes. I went to the store where I know there are people working that have disabilities.

After filling my grocery cart to the brim with the coming week’s meal items as well as a majority of what will become our family’s Thanksgiving dinner next week, I pulled my cart up to the checkout counter. The person in front of me was paying for their items and I began to unload. A young man came over and asked if he could unload the rest of my groceries, a second stood at the counter ringing everything up, and a third man, John*, stood at the end of the aisle waiting to put the groceries into bags then into the waiting second cart.

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 If I was on a bicycle (obviously this is a hypothetical situation :) ) and riding along the road and found myself in the path of a bunch of cyclists that are in a race, my personal fast pace would likely look like I was just strolling along slowly in comparison to the cyclists going twice as fast as I was. It’s not that I was riding slowly (remember, this is hypothetical!), it’s simply that they are very fast at what they are doing.

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 The last week or so I’ve had several conversations with friends and therapists about life skills, job training, adult workforces for people with disabilities, and the NEED for acceptance, self esteem, and being part of the workforce that most people have. With or without disabilities.

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 Back at the grocery store, man #1 quickly unloads my entire cart. Man #2 scans as many groceries as he can fit on the end part of the carousel area. John begins bagging groceries. He looks through, finds the canned items and puts them carefully in a bag then into the cart. He finds the cold items and puts them together. He grabs the items in glass jars and bags them then puts them in the cart.

 The cashier stands there and watches him. He puts two things in a bag. The first man walks away. John continues to put things logically into the bags and carefully into the cart.

 He’s not moving slowly. He’s just moving at a pace that’s normal for him. He’s working through his thought process, carefully completing a job he was well trained to do.

 Unless you compare him to the cashier.

 Then, you think he must be moving at a snail’s pace as he methodically goes about his job and carefully packs the groceries away.

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 Tonight as the last of my groceries was put into my cart, I thanked John for his work. I pointed out a place where that last bag he held would fit without squashing any bread, eggs, or fruit. He offered to bring my groceries to the car, and as always I declined. Then he turned back to his work.

 The cashier handed me the receipt, and he said to me, “I’m sorry it took so long… working slow tonight.”

 All sorts of thoughts ran through my head as I walked out to my car. John needs a job like this. He did very well at his job. He’s not a marathon runner or riding in a bicycle race. He’s going about at a pace that’s fast for him, and that, compared to someone else on another checkout aisle, wouldn’t have seemed very slow at all. And yet, he was being looked at as if he’s slowly ambling along.

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 Have you been at that cashier line lately? Have you had that person that appeared to be working at a snail’s pace put your groceries into the bags? Have you given them grace?

 What the cashier didn’t know about me is that I am proud of John. What he didn’t know about me is that in about 20 years, I will be the proud parent of six adults, much like John. What he didn’t know about me is that no matter the hurry I may have been in, I was willing to wait on John.

 What he didn’t know about me is that tonight when I left the house at 7:15 to go to the grocery store I drove past the store where you pay 25 cents for a cart and you bag your own groceries, past the store where you can buy everything from clothing to lawn chemicals as well as your meat and potatoes, and I went to the store where I know there are people working that have disabilities. And I was HAPPY to have John carefully help me check out.

 *name has been changed to respect privacy

Change is Good

I’m not very good at routines.

I’m finding my son may very much take after his mother in this regard.  He doesn’t appear to be very good at doing the same thing for too many hours/days/weeks in a row, and would much rather change things up on a regular basis.  He needs something to excite him to go to the next thing.

I rearrange furniture a lot.  I change up the style of ‘meal planning’ we do because even that gets boring if you do one type of planning for too long.  I move the kids’ bedrooms around, I change the “cling stickers” on the kids’ bedroom walls.  I repurpose rooms and just about every space in our home has seen at least one or two if not five or more revisions since we moved here 7 ½ years ago.  I like change.  I get ‘stuck in a rut’ with routines and I feel like I’m suffocating, unenergized, and unable to get up the enthusiasm about life to continue doing the same thing on a daily basis.

That all probably sounds crazy to people who tell me “children with intellectual disabilities THRIVE on routine and on knowing what to expect.  They do best when they have predictability to their day and to their environment."

Well, I guess I wouldn’t be a very good parent to a child with intellectual disabilities.  :)  Anyway, that’s a total side note to the purpose of this note.  

Kristopher needs change.  

You see, the morning went like this “WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH.”

I’ll let you leave it up to your own devices to figure out whether it was him, me, or both of us that sounded like that, but THAT is what our house sounded like this morning.

Then I pulled up FaceBook (with those 9 friends I’ve stayed connected to, no worries, you’re not missing anything as I’m only posting on The Cornish Family still as of this moment… subject to CHANGE, of course..!) and I saw a post by one of my very sweet friends that suggested a new way of homeschooling.  It described very much what we do with Kris already.  I must admit, I was pretty down on myself and on how to motivate for homeschooling as well.

After a while I went to go tell Kris that his attitude is not Christ-like and he needed to stop and spend some time in prayer to figure out what he was going to do about it.  Then, I realized I should have been wagging that finger (figuratively, of course) at myself and I went and did the same.

I realized that my own struggles are things that he also struggles with, and that he’s ‘stuck’ in this rut of schooling.  He’s on week 22 and he’s ready for a change.  Not a break from work, because then he’d never want to restart again (though we are going to take next week off for Thanksgiving and hope and pray that the week after that restarts ok!).  

We are a ‘remove privileges’ kind of family.  You earn ‘em, you keep ‘em, you don’t earn ‘em, they disappear.  Unfortunately for Kris, the last couple weeks in regard to his decision making skills and his school work (two separate issues) he’s been struggling.  That means he’s not had several of the privileges that he previously enjoyed.  Namely: electronics.  

Today I started the Grace Game.  In general it was an effort to positively change his attitude.  

Last night he was excited about it.  He even was going to help keep ‘tallies’ on other people in the family, catching everyone “doing good, showing grace.”  (There are no negative tallies and no taking-away tallies, so I thought it would be positive!) The game lasted about 60 minutes.  In that time he grumbled, complained, and was overall NOT showing anyone grace nor attempting a positive attitude.  The game stopped. He wasn’t there to keep track of other people’s “good” while being a BEAR to everyone else!  He was the reason they were earning extra points for showing grace “when it’s not deserved!”

Strike 1 for mom.

Time for reinforcement.  This morning he lost his “up” time, which is the ability to stay up later than regular bed time. After all, if you cannot behave, you must need more sleep, therefore you cannot stay up after the regular bed time.  Makes sense to me.

So that’s when my last resort thought came, you know, the one above where I said “hey, buddy, put some prayer on those lips and figure out your day.”

The one where I followed my own advice and did the same.

The one where I realized he needed more than a game.  He needed a lecture, a few consequences for his actions and some time in isolation.  

No, no, no… that’s not what we headed to.

I realized I needed to change up his subjects.  Change up his chores.  Give him a little freedom.  Loosen the reigns and tighten them in other areas.  Give him some choices.  Let him rearrange the furniture in his own head…

New routine + New opportunity to earn electronics + New schedule for chores = New attitude + New gusto to get it done + New factor of kindness toward other people

Let’s hope this lasts.  

Then again, I know it won’t.  Because in a few weeks, he’ll need to paint the bathroom green.

Praying for the captors...

This is a blog post originally written in January 2008 when we had just finalized the STOP of the adoption of Aleksa the first time (also referenced as "Sasha" below) and our intention to adopt Emma and "Simon" (who was not yet available and we instead adopted Micah who was 'newly' listed-- Simon was later adopted as well, though).

Praying for the captor.  And now... FREEDOM.  I'd forgotten about this, but I distinctly remember laying on that stuffy twin bed in the hotel in Korosten praying and crying and reading the Bible, flipping pages and reading aloud and Michael saying I wasn't making sense then jotting down notes...  Mike eventually did make sense of me :)

Before going to bed I began to consider a name for our future children. The name we had for Sasha was Aleksa Faith. It is by faith that we stepped out to find her. The name for our son, unknown to us(but this would be Misha), was Dylan Jeremiah. Today we learned our new son’s nickname is Simon. We have decided that Simon will be his middle name as we have named each of our children with a strong Biblical middle name. For our girl, since it was Faith that brought us to Sasha, seemed appropriate to have the middle name of Hope. So I looked through my Bible's concordance for Hope. What is a verse to cling to for our little girl? Immediately the verse we know so well stood out to me. Jeremiah 29:11. “For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” How fitting.
Our little girl will not have a future without being adopted. But the lord has plans for her. Plans to give her hope and a future. Plans to prosper her and not to harm her. Plans to give her a family and love. And how neat that it stood out to me because of the name Jeremiah that precedes it (the name we intended for Misha's middle name).
That’s not all though. That’s just in the concordance. When I turned to Jeremiah 29 I began at the beginning of the letter. It was written by the prophet Jeremiah and “sent from Jerusalem to the surviving elders among the exiles and to the priests, the prophets, and all other people Nebuchadnezzar had carried into exile from Jerusalem to Babylon.” It carries the words that the Lord has sent to the exiles. In verse seven it says something unusual though. “Also, seek the peace and prosperity of the city to which I have carried you into exile. Pray to the Lord for it, because if it prospers, you too will prosper.” In my study notes it says this “An unprecedented and unique concept in the ancient world; working toward and praying for the prosperity of one’s captors.”
It goes on in verse 10 to say that at the prescribed time He will come and fulfill His promise and bring them back. Then verse 11, plans to prosper, to give hope, to give a future. In verse 13 and 14 it says “You will seek me and find me when you seek me with all your heart. I will be found by you, declares the Lord, and will bring you back from captivity. I will gather you from all the nations and places where I have banished you, declares the Lord, and will bring you back to the place from which I carried you into exile.”
He will collect his children. He has a plan for them. And a plan for their captors as well…In the end of verse 21, speaking of those who have spoken lies in His name, it says “I will hand them over to Nebuchadnezzar king of Babylon, and he will put them to death before your very eyes.” Those that created stumbling blocks will be dealt with.
Thank you, God for teaching us to pray for the captors. Pray for those who persecute. Pray for the captors. Pray not just for a change in their heart, but for their prosperity. Because if they have peace and prosperity so will the captive.
I don’t know about you, but I never thought to pray prosperity on the ‘captor’ of Sasha’s orphanage. I didn’t think to pray peace. But it is true… if he has peace and prosperity, so then will Sasha. And in an economy where the need for money is a drive for so many inappropriate actions and decisions, prosperity may be just what some people need in order to be okay allowing change.Tonight I ask you to pray for peace and prosperity on the director of Sasha’s orphanage.

Entitlement

WOAH, no one likes to hear that word!  If you say "entitled" then maybe it's ok.  But entitleMENT seems to put a bit of a spin on it that suggests that somehow it is wrong.  It is a state of mind/descriptor/etc that people shouldn't have.  But somehow to say to someone "you are entitled to it" is still ok.

So, why would I throw out such a word to start off this post?  Because I had a little battle with myself about entitlement today.  Yep, with myself.  Let me tell you about my day today.

At 5:45 my alarm went off and I crawled out of bed after about 5 hours of sleep, wishing I could lay back down.  The day before we spent about 10 hours in the car driving home from a weekend get-away and I had started feeling poorly the last half of that trip home.  By the time we were home, I had to get the kids in bed, three little boys showered in preparation for today's adventures, everyone's medications done, and Michael unpacked the car and cleaned it out as well.  Then we got everything ready for today- clothes out for everyone, medications and feeding pumps and diapers and formulas packed again.

Today at 6:30 we pulled out of our house in two cars with our three younger boys and drove an hour to Orlando to the hospital.  Traffic and road construction had us cutting it close to the wire for arriving on time.  Then we drove in circles for 30 minutes trying to find the entrance that we'd been told to valet park in front of through all of the construction, finally giving up and finding a garage that we were told by a kind man on the side of the road would connect us where we could at least walk to the correct building.  Once inside, we walked the entire length of the hospital then turned and walked the entire width of the hospital.  We got to a desk where we had been escorted to by an RN that was headed a similar direction and was in the parking garage with us, only to be told to retrace our steps for surgeries and go back practically where we had come from but following a different set of hallways once we got halfway.

We walked in to a long room with a door at the end and recliners lining the walls and went up to an empty window at the end sporting the photo of a man whose name was the same as the lady at the first desk had said it would be.  Three staff people went in and out the doors, and we stood there still... 30 minutes late to our appointment.  Finally they said "oh these are the brothers!" and brought us back to be weighed then in to a room prepared for them with three hospital beds.  Then they came in to tell us that things were "running behind" because of some complications that were unexpected with some of the first patients of the day.  Eventually, the first two boys went back to back for procedures and Michael met each one in the PACU to sit with them while they woke up, then Micah was sent back to me in the recovery area just as Wesley was taken back for his procedure, then James and Michael came back out a little while later.  Things were going like clockwork.

Michael and I dressed the boys, gave them clear liquids, and some young girls showed up with wheelchairs ready to escort Michael, James, and Micah to the car to go home.  Wesley's surgery was scheduled to take a little longer.  I was called to sit with him in PACU just as Michael and the little boys were ready to wheel out, so we said our goodbyes and went separate ways.  Another 4 hours later, after things that shouldn't have really been very much different than the first two boys just didn't happen in the same way once we were sent to a different (mixed adults and children due to the later time of day) recovery room... Wesley and I finally got our jailbreak.

I should mention here that I woke up that morning with a sore and swollen throat and took Tylenol which helped tremendously the first half of the day, but quickly wore off as the day wore on.  I was tired, achy, icky feeling, and *I* wanted to go home... and Wesley had been a great patient, but his patience had worn off and he was DONE by the time we convinced the nurse to let us leave.

This brings me to 5:30pm when I walked down the hallway, got on an elevator to the 3rd floor, then walked another two sets of hallways to come to where there was another set of elevators to go to the 6th floor... and saw a restroom.  It sounded like a good stop to make, so Wesley and I turned in to the ladies' bathroom before hitting the elevator.  11 hours since we left home, we were exhausted, and I was, without a doubt, ready to be home.  Not just that, but to get some Tylenol for the aches and fever and to curl up under a blanket and go to SLEEP.  RIGHT. THEN.

That's when the entitlement factor kicked in.  It drove me from "God is good, and by His grace we do what we do" which I had to have said to 10 staff members that asked how in the WORLD we could have 3 little boys with special needs that day.  Up until right when we were leaving, I kept a smile on my face and a kind posture to my words.  Standing in that bathroom, however, I didn't want to think nice thoughts or say nice things.  I was downright frustrated.  I stood and waited.  And waited.  And waited.  The toilet flushed (Wesley screamed).  The sink ran.  The paper towel machine made noise.  All of that happened in the handicap stall.  I looked at the sink next to me, empty.  And the three stalls.  Also empty.  None of which would help me because I needed to use a restroom where Wesley and his wheelchair would fit inside with me.  We waited some more.

Finally, a single woman with her purse thrown over her shoulder came walking out with a bounce in her step.  No, wait.  She didn't even come out.  She opened the door, and asked if she could hold it for me, while standing in the way of me getting the wheelchair in that stall, which would have resulted in her being stuck in the stall WITH us while I used the restroom.  She had no idea.

She had no idea that we had been there, waiting after we left our house 11 1/2 hours prior and with my son that had been through a pretty painful surgery.  Waiting, so we could go get gas, food, and get on the road after feeling like we were held captive for the last 2 1/2 hours of our time after his surgery.  Waiting, knowing that this was the first opportunity in many hours that I had to use the restroom, and likely would be the last opportunity before we came home.

Something in me wanted to say something ugly.  Something to say to her that she could have washed and dried her hands out in the main bathroom instead of taking up the handicap stall longer.  Something to say that there really was no reason for her to be in there in the first place, because she had no disabilities and had no one with her that would require the extra space.  Something that pointed out that there are people that are actually disabled and people escorting them who are being made to wait (in pain) because she wanted to take her leisurely time in the only place that they could go.

Then, God smacked me over the head.  At least, that's the way it felt.  The thoughts that began running through my mind went something like this...

Nothing in your life makes you any better than her.  Nothing she did was wrong.  She may have been inconsiderate, in taking the handicap stall, but there was no reason for her not to enjoy the space and the cleaner restroom (which is often the case) instead of one of the others.  She didn't jump ahead of you and take the only place you could go, she was already in there when you came in.  Your son doesn't need to use the restroom and isn't even upset about waiting (except the toilet flush which has nothing to do with where she chose to use the restroom).  Just because you have a better excuse-- or even a need-- for something special for your child or for yourself because of your child doesn't make you ENTITLED TO IT.

DING DING DING.  I had this creeping sense of entitlement sneak in.  It's the same one that occasionally pops up when people who have handicap tags make snarky comments about all of the elderly people in Florida having handicap placards and how that's why there's never any handicap parking when you need it.  It's the one that sneaks up when there have been accommodations made specifically for people with special needs that, for whatever reason, a person isn't able to utilize when they qualify for it, but it's unavailable because of some other reason-- be it the busyness of a situation, it being used by someone else, or even if the person doesn't qualify in all the categories but still feels they should be... entitled... to it.  I hear it regularly about people who cannot receive medicaid when they could really use it-- but their income isn't quite within the boundaries.  Or SSI for their disabled children, but their family asset base is too high.  I hear it about school services and public park facilities and parking lots, and yes, even restrooms.

What we, as parents of children with special needs, need to do is take a step back from what appears to have been created "for our children" and we feel we have a right to access, and recognize that despite it being made "for them," it does not meant that we are entitled to it.  The perks are great, and sometimes are absolutely necessary for us to be able to access things (such as restrooms for our children), but when something that is "helpful and great and we are thankful for someone providing it" becomes something that "we are supposed to have access to and we get ourselves all messed up over not having it how and when we want it," then... we have taken things too far.  We have entered in to entitlement.  We have begun to sink the ship of gratefulness and begun to build a wall of pride to fall off of.

Do I mean that the idea of accessibility is just a 'nice notion' and not everyone should be welcoming to people that need handicap accessible areas and other such 'conveniences' that make life DOABLE?  No way!  Do I mean that benefits that are available to people with special needs shouldn't be available to them? Not necessarily (if one qualifies within the boundaries of the law).  What I DO mean, is that when others are living life innocently and choose to use the nicer bathroom or the person that doesn't APPEAR to be handicap uses their tag to park closer to the grocery store, or anything else happens which makes it so that what we feel is there FOR US and OUR KIDS is not available to us, then we need to take a few breaths.  Breathe a few prayers.  Refocus on God and on life and on the thankfulness we SHOULD have in everything we do.  Despite our circumstances, despite our lack of sleep, despite our long days of caring for our children and despite our 'natural' tendency to want to react when we have had a day of testing.

Then, we wait that extra 2 minutes for the toilet to flush, the water to turn off, the paper towel dispenser to make noise, and we SMILE and THANK the girl offering to hold open the bathroom stall door for us.  And when she gets trapped inside, well, I suppose that's when she might want to rethink her offer to hold the door next time :)

There is nothing greater in life but to love and be loved

In the past month we have experienced something special.  Something that we knew existed but had yet to experience for ourselves.  Something which puts so much HOPE in us for the future, and so much JOY in the present.  We have experienced a new kind of ministry.  One that has opened their arms to our family and gone out of their way to make things work, and work WELL, for us.

This church is First Baptist Church of Orlando, and this ministry is their Special Friends ministry, run by Michael Woods.  

Let me share a little more about this situation...  We first approached Michael Woods as we realized we were going to be looking for a new church about 8 weeks or so ago.  When we first spoke, it didn't start with "we want to join your church," or "we are looking for a new permanent place to go to church."  No, it started with "we haven't been to church as a family in several weeks, we are looking for somewhere that is already established that we can 'rest' at, we don't know where we are going or what is happening next, but we need somewhere that our family can worship together soon."  

Mike and I set up for the whole family to go over to meet Michael Woods one afternoon and see the church campus, the special needs room, and for Michael to get an idea of the temperaments of the kids and ask questions, etc while we spent about 20 minutes or so together.  Even knowing that we weren't sure (and still are not) whether this would be a long term solution for our family or not, Michael went out of his way and has made it abundantly clear to us on a regular basis that he has a JOY in serving our family and our children.  There is not a burden that comes with having a large special needs family there.  It's not because this is a huge church or because there are people there with nothing better to do than spend time in special needs ministry.  This is a successful ministry because there is a passionate person running it who truly cares for the children involved, trains the volunteers well so they are not overwhelmed with the classroom, and who takes the time to know the children and families individually.

We are impressed not only with the way that the church special needs ministry has welcomed our family in, but in the support, encouragement, and prayer that they have offered as well.  Even though we are not members.  Even though we are in such a transitionary place in life that we don't know where we may land tomorrow.  Even though we didn't come in offering what we can do for the church.  Even though this church isn't in our neighborhood, not even in our city.  It's an hour drive to get there, but not for a moment will we complain about the time or gas that it takes to get there, because what we have experienced has been something so refreshing that time and money cannot compare.

It is said that the greatest things in life are to love and be loved.  We are experiencing that, and are grateful for that peace and the ability to have a moment to 'rest' each week as Michael and I listen to God's Word, experience musical Worship, and our children are taught the good news of Jesus Christ at the same time.

 

This, my friends, is something special.  And I hope and pray that this special something will be a spark that turns to a flame in The Church.  We pray this is something that we can bring in to whatever ministry God is preparing us for in the future as well, and we are so very thankful to Michael Woods and the volunteers that run the Special Friends ministry at FBC Orlando.

Celebrating Jesus’ Birth in a Santa Filled World…

Without letting go of “Santa” all together!

Let me preface this by saying—I have no issues with the man in the big red suit. My kids have been to “breakfast with Santa” in the past and every year we set out stockings in hopes that Santa will come and fill them with goodies and leave a gift under the tree too.

Where we differ from “Mainstream Christmas” is that we wholly believe that the holiday is to celebrate Christ’s birth, not to give gifts of “good cheer” and celebrate “holidays” that are man-made.

So how does Santa fall in line with a Christ-filled Christmas??

Santa, like Christian parents, celebrates the birth of Jesus Christ on Christmas day as well! It is because of the birth of Christ that we give gifts to our family and friends!

Here’s the thing…if you want Christmas to be about Christ—it’s going to have to be the parents’ job to make sure that your children understand that TRUE meaning of Christmas.

In decorating the house, it’s fun (and pretty!) to put up Christmas lights and a display outside. Have you considered a nativity scene or carolers instead of snowmen and Santa Claus? How about those Christmas stocking holders, do they spell out g-i-f-t-s on your mantle? Is your Christmas tree topped with a star or angel, signifying two main ‘parts’ of the Nativity scene? When you talk about the anticipation of Christmas is it about Santa coming and “what do you want for Christmas?” or do you spend more time on “Jesus’ birthday is coming soon” and “how should we celebrate His birth?”

Are your crafts revolving around reindeer and snowmen or do you have the Christ child in there too? Are more of your bedtime stories about the birth of Jesus or little elves in a workshop?

We try to find not just a BALANCE in our home, but a sure tilt to the direction of a CHRIST filled Christmas in our home! Sure, there’s our elf on a shelf that reports back to Santa, and there are reindeer on our stockings and some Santa snowglobes in our home. The kids anticipate Santa coming! But if you ask them why we celebrate Christmas, then those who can talk would hopefully be able to tell you that it’s Jesus’ birthday and we give gifts to celebrate HIM!!

In the spirit of Thanksgiving

Some days are hard.  Just hard.  Nothing seems to go right from sunup to sundown.  There are kids not listening, or misbehaving, or even more fun… when they have behaviors that escalate throughout the day which serve as their own undoing (and mine!). 

Sometimes I start the day refreshed from a good night’s sleep and ready to go.  Other days I start after having woke every hour all night long with a fussy Delaina or Wesley needing to be repositioned, or Lynae needing to go to the bathroom, or Kristopher having a bad dream.

Some mornings I start the day behind, I can’t seem to get things going very quickly, and it feels like it’s late before I get going and doing everything that needs to be done.

Some days… I wish things were easier.  That the kids were able to go to the bathroom by themselves, pick out their own clothes, put them on, and put their dirty clothes in the hamper.  That they could pour some cereal and eat their breakfast.  That they could all drink the same drink, even (at the moment we have 8 different drinks among the kids at breakfast and dinner by necessity).  Sometimes I wish everyone could drink from a regular cup, that they could carry their dirty dishes to the sink, wipe their own faces, wash their own hands, and for that matter, their own butts and glasses too.

Age isn’t the factor, because my 3 yr old can do all of those things on her own or with minimal supervision and assistance.  No, it’s not their age that prevents my children from being able to take care of the simplest of their own basic needs.  It’s their disabilities.

Yep, there it is… I said it :).  There are things my kids can’t do because they have Down syndrome, or cerebral palsy (or both… and autism!).

Some days I wonder what life would be like if we still had our many blessings, but if they also were able to do some of their own care.  I wonder whether I’d feel less swamped, or whether I’d be bored. 

When I have those days, those moments, and even just fleeting thoughts sometimes, they never last very long.  Why is that?  Why can something so overwhelming seem all encompassing one minute and so simple and obvious in another?

The answer is pretty clear to me.  It is because I have been given a great gift.  A gift which I couldn’t have asked for, can only receive.  One which comes along with the blessing of knowing without a shadow of a doubt that I have an assurance of salvation.  It is the working-out of the Spirit in me… it is the Fruit of the Spirit.

Love, Joy, Peace, Patience, Kindness, Goodness, Faithfulness, Gendleness, and Self Control.
I wish I was able to better exemplify this Fruit.  To show God’s fullness of Spirit in every way, and in every situation in my life.  Reality is, though, that there are days I feel run down, beaten up, and I can’t think of a single reason or conjure up the desire to show these things.  Days that I fail myself, my kids, and my husband.  Times that, really, I don’t like the person that I am.  But…

But, in the spirit of Thanksgiving… with the knowledge of Christ’s sacrifice for me… I stand back up straight, I look at my children (whom I love wholeheartedly, and despite those things that they cannot do for themselves, I do generally consider it a blessing to be ABLE to do those things for them!), and I remember with a thankful heart just how God formed our family and brought us together.  Then, the Fruit of His Spirit can once again encompass my heart and life to keep on keeping on. 

Love, Joy, Peace, Patience, Kindness, Goodness, Faithfulness, Gendleness, and Self Control.  The Fruit of the Spirit.  Given to us so we might also know the spirit of Thanksgiving.  Thanking God for His sacrifice and the many gifts and blessings we have each and every day!

Dual Diagnosis: ADHD and Down Syndrome

Another day, another diagnosis...

Today Aleksa went to the neurologist (same doctor we saw yesterday, they just didn't want to do both girls as new patients in the same day).  She was diagnosed with ADHD which was apparent within 2 minutes of entering the exam room :).

And now, I've become "that parent."  The one that says YES, let me try a medication to help with my child's attention and hyperactivity.

Let me first say-- the hyperactivity we have learned to deal with.  Deal we do.  It's not that big of a deal, though it can drive us up the walls some days.  The attention deficit, however, is not only frustrating to US on a much deeper level, but is SEVERELY LIMITING Aleksa's daily life.

People used to believe that there was no such thing as a dual diagnosis of Down syndrome and ADHD, and that the hyperactive and lack of attention were simply "part of the characteristics of Ds".  Having 5 children with Ds, let me assure you that it is NOT apparent in every child with Ds!  Three of my five have no indications of ADHD.  Two... DO.  Very much so :).  The second is younger and not at a place where he has NO ability to concentrate, therefore I don't feel comfortable seeking a formal diagnosis or medication for him at this time.

For Aleksa, some of her history could very well have to do with her attention deficit and hyperactivity.  She spent years... literally YEARS (8 of them) without any type of boundaries that would teach her social appropriateness, or to teach her to be able to look at, focus on, or otherwise concentrate on ANYTHING.  No one ever tried to get her to... so how would she be able to at 9 1/2?

Aleksa has adapted VERY WELL from institutionalized life to family life.  There are still a LOT LOT LOT LOT of difficulties, and more hard days than 'good' ones.  She still has behaviors that top the charts of what we've dealt with in any of our children, and issues with attachment and bonding that are more than we've ever experienced before and show up at very random times... not every day.

I have and continue to be a strong advocate of "don't seek any behavioral (including ADHD, autism, PTSD, etc) diagnosis for your newly internationally adopted child until 12-18 months after the child arrives home."  SO MUCH CHANGES (in those first 12 months especially) that a child that is a total out of control monster like Aleksa was (said with much love, and intentional menace because she would melt down in to the little "Incredibles" baby that burst out in flames and look the devil himself when she saw food and wasn't able to take it for herself and eat it RIGHT THEN (including a child walking down the sidewalk with a lollipop or someone eating at a food court as we walked around at the mall) therefore making life VERY difficult... to grocery shop, go anywhere in public, or especially to eat out and have to wait for food while others around us were eating... did you follow all that rabbit chasing?) can change in to the little girl that has behavioral troubles but generally can conform to whatever we're doing and participate as a part of the family-- with firm boundaries.

After that last sentence, go ahead and ask yourself WHO has attention issues... It's ok :)

If you didn't follow... I strongly believe that the changes in an internationally adopted child initially are significant enough to avoid diagnosing or medically treating behavioral things for quite some time, and therefore we tried other means to deal with the behaviors that we saw in Aleksa.

Here are some of the things that we recognized in Aleksa at 16 months home which are what helped us make the decision to seek medical intervention:

• She can't look at anything for more than 1-2 seconds.
• Aleksa cannot put a puzzle piece in a puzzle because of being unable to concentrate long enough to find the right place, put the piece there, turn it and successfully get it in.
• Aleksa has not learned any letters of the alphabet to be able to consistently identify them even though she has been exposed to them daily for 16 months.  The same is true for numbers and the concept of counting.
• Given two pictures and being asked for one- using a word or sign- Aleksa cannot pick up the right picture card consistently because she cannot look at the picture cards and concentrate long enough to figure out what we're asking her for.
• Aleksa cannot sit in one place without very firm boundaries as to where she is to be.  (*some of this is related to her control and attention SEEKING behaviors as well!*)  
• She is in constant movement whether sitting or standing.  Her hands are always moving, feet moving.  She touches everyone and everything around her, and makes constant "uh, hm, huh, wha, uh, nuh" sounds as though she's talking... but she doesn't talk.  
• Aleksa has little or no "intentional planning" of movement.  She will go get something, put it down, get something else, put it somewhere else, pick up a crayon, put it back down, get another, draw one line, put it on the side, turn it over, snap it in half, get another crayon, throw it across the room, then stand up, get a book, open it, close it, flap it in her face (she copies Emma in this for a second or two) then  hand it to someone then try to get them to open it, then walk away, then pick up a piece of paper, then go to someone and murmur something (no speech...) then go put it in the trash can, then.....  It is a constant movement without anything meaningful or planned out.

The biggest reason for US to seek medical intervention/medication for Aleksa is that we want to see whether she will have a BETTER QUALITY OF LIFE by being able to control herself some more.  Basically, if a medication will help her to be able to focus on things better, then this could open up the world of LEARNING to her.  letters, numbers, shapes, objects... the list goes on!  It could possibly help her to focus enough to take in from her environment instead of being so hyperactive and inattentive that she can only draw little tidbits from it in 2 second pulses. 

The behavior... we deal with.  That has no bearing on us choosing medication at this time for Aleksa.  The goal is for her to be able to focus, to learn, and to take more control of HERSELF and her actions so that she can have more meaning in her life.  

So, today was 1/2 dose day (and no noticeable difference, I will say...) and tomorrow will be another 1/2 dose.  We will go to a full dose if we find that there are no adverse reactions to the medication after a few days.  We'll do this for a month then go back to the neurologist to evaluate the effects of the medication.  At the moment we're starting on a "classic" medication- a slow-release version of Adderall.

Our neurologist said today that children with Down syndrome and ADHD can have "true ADHD" which medications designed to help this will work well for.  However, children with "mental retardation" (yes, this is the term still...) in general can also have hyperactivity that's due to a different part of brain control which they haven't figured out how to control.  For those children, the traditional ADHD meds will not help, however stronger, more "psychiatric based" medications can re-center the child enough to help with the hyperactivity and attention issues where the ADHD meds may not.  Many of you may be familiar with Risperidone which is often prescribed for children with Ds and autism.  That is a different class of medication than the traditional ADHD medications, but can also be given to children with Ds and ADHD that do NOT have autism.

(*Let me take this moment to clarify that Emma will NOT be put on medications right now, because although she has Autism and Ds, she doesn't have behaviors which severely restrict her social, educational, or emotional life therefore we don't feel the need to seek that for her at this time*)

So... the adventure begins.  Two children with "official" dual diagnosis, and the entrance of the terms Autism and ADHD in to our daily lives.  Though... we've already been living with both, so there's not so much that changed except the titles... and the treatment!

Dual Diagnosis: Autism and Down syndrome: The Post-Institutionalized Child

Today was the day.  Not one we've been dreading or even earmarked in any special way on the calendar, but that's because our journey to an Autism diagnosis is much different from many other people's experiences.

Today, Emma received the official diagnosis of not "just" Down syndrome, but added Autism Spectrum Disorder,  Obsessive Compulsive tendencies, and Echolalia from a neurologist.

Yes, we knew it was there, knew the diagnosis that would be made, and were already dealing with the effects of these diagnosis...

No, it isn't what we hoped for our daughter, isn't something we wanted her to have to deal with, and isn't something "easy" as a family to deal with.

But deal we do :).

Backtracking...a look in to the early life of a post-institutionalized child

Emma came to us in 2008 at 5 years old.  She was 17 lbs, severely malnourished, neglected (with scars from lack of diaper changes to prove this...), and had the responses that signaled previous abuse.  Emma spent the first five years of her life inside of a crib in a room with three other cribs.  There were chair-height walls in the room and glass windows above that to the ceiling on the interior walls, and a door which remained closed.  It was in the front area of a special needs "infirmary" at an orphanage in an Eastern region of Ukraine.  There were two other rooms just like this one in the front room as well as a small open kitchen and another room which served as a lounge/office for the workers.  Then there was a hallway with 3 or 4 of these rooms off of the hall down one side, all looking the same with four cribs in each.  Micah was alone in the furthest room down the hall for his first 18 months.  Likely because he cried pitifully and constantly.

Emma was not held, made obvious by her total distaste for being held for long periods of time upon arrival in to her brand new "longed for forever family."  She wasn't able to hold the weight of her own head, much less put any weight on her arms, legs, or try to get in to a sitting posture.  She rolled over, side to side, and moved about in her confined space, about the size of a pack and play in the US.  She was treated with medication to help control her body's response to her heart, however she wasn't given the opportunity for the open heart surgery that she so desperately needed... she had a complete AV canal, which in the US is always repaired before age 1, and usually as soon as a child reaches 10 lbs.  Sooner if the child stops gaining weight or goes in to further heart failure before reaching that ideal weight (such as Brianna, who had hers at 5 months old weighing 8.5lbs).

Emma had other medical issues due to her heart not being surgically repaired.  She had multiple series of strokes or TIA's which caused lesions in the white matter of the brain on both sides.  Why? Because her heart was unrepaired and the way it worked allowed clots to form that then passed to the brain and caused strokes.  Emma's left side is now slightly weaker due to those strokes in her infancy and early life.  Another environmental factor that forever changed Emma's life.

Emma was fed broth through a bottle with a nipple cut so large that she didn't have to suck, the liquid poured out in to her mouth, all over her, and she wore as much as she ate.  She sat in soiled diapers, was fed about 8 ounces 4 times a day, and she laid there.  To entertain herself, Emma sucked on her hand.  Not just her fingers, no... she put all of her fingers, fully extended, down her throat and her entire hand except her thumb in as FAR as she could.  Yes, well past where a gag reflex should have been.  She would take her other hand and SHOVE her hand in deeper.

Emma dislocated her knees and ankles.  I'm sure it hurt, but it was a physical sensation, and she had to have SOME input.  She scratched at herself.  She rubbed her face until it was raw.  She rocked her entire head, neck, shoulders, and upper body while she chewed her hand up, back and forth, back and forth.  She had a crudely-buzzed haircut and a balding area along the widest places on her head which showed where the hair refused to grow because of the constant friction.

Emma didn't make any eye contact, didn't like to be held, smelled horribly and had the worst breath I'd ever smelled.  She'd never had her teeth brushed, she didn't care for myself or Michael very much, and she didn't tolerate the attention of Brianna or Kristopher for more than a few minutes at a time.

We had to learn to love Emma.  And she, well, she had to learn to like anything... and eventually to love.  It wasn't an easy process for either of us.  You know who it was easiest on?  Those we'd prepared for it to be the hardest for.  Kristopher and Brianna.  The unconditional love of CHILDREN.  They loved her no matter her smell, her bad attitude, her pushing them away.  Brianna, 2 years old and also with the diagnosis of Down syndrome, saw Emma as a sweet baby.  She would sit and suck her two fingers and rub Emma's head.  Kristopher would try to hold her, encourage her every step in her accomplishments, and admonish her when she wasn't behaving.

And then there's the screaming.  When Emma was done with something, or was uncomfortable in a new situation, or when she just had "something" bothering her... often unable to be distinguished by us... she would scream.  She would collapse in to sobs and then escalate to complete FITS.  There was nothing we could do except keep her safe, lay her down, and often put her in a crib and leave the room.  After all, that was her "comfortable place."  Not the arms of her mom and her dad.

It's hard for adults to bond with a "stinky, smelly, screaming, non-compliant child" that can't do anything for herself and doesn't want you within 5 feet of her.  It's hard for a child that's known nothing but self-reliance, abuse, neglect, an empty stomach, a bottom covered in sores, and didn't understand the idea of touch, holding, communicating, or eye contact to all of a sudden join in to a "regular American family" that wanted to love her, hold her, and bond with her.  For a 2 and 4 year old... it was a MUCH anticipated sister who their mom and dad traveled the world to bring home, and she was a TREASURE.

We have so much to learn from our children...

I know plenty of people that will read all that I just wrote, or experience something similar either in their travels or in their own adopted children's history and they feel nothing but anger.  Anger toward the people who "did this" to her isn't one of the things that comes to mind.  In Emma's situation, the people at the orphanage were not systematically starving Emma (though I know this does happen at other places).  They weren't denying her medical care that THEY could get for her.  They weren't leaving her be because they didn't like her.

The workers in the orphanage where Emma lived did what they knew how.  They treated the symptoms.  They left her alone when she was mad.  They fed her what they were told.  The diaper neglect... who knows.  The abuse, I don't know about that either.  But I know that the women WHOM WE MET and spent time with, and who I have SINCE BEEN BACK TO VISIT AND SHOWN PICTURES OF EMMA THEN were nothing but sympathetic to her, and truly cried tears of joy when we showed up the first day to visit with her after receiving her official referral and permission to do so.  They, of course, thought we were crazy, especially since she and Micah would make FOUR CHILDREN! (We laugh about that now... :) We had 6 kids when I went back to visit.  We were in process to adopt our 7th (Wesley) and had just found out Aleksa was still alive and well when I was there visiting them).  These women were simply doing their job, and turning off their hearts because they KNEW that if they allowed themselves to FEEL, they would be overwhelmed by the day to day of their work.

Societally, they had been brought to believe that the children with disabilities were "less than people" and not only worthless, but unable to understand, feel, etc.  In that society, the amount that the caretakers DID CARE was amazing.  And thankfully, education as well as the opening up of the closed world that is coming about through availability of the Internet is giving human rights a whole new look, especially for children and adults with special needs!  Change is slow, but it is coming...

Jumping ahead to today... The post-institutionalized child, 4 years home in a FAMILY 


Emma is a changed child.  The sparkle in her eyes, the HEALTH in her overall body, and the joy in her countenance are a complete 180 degree turn from the child we first met in Ukraine over 4 years ago!  Emma now understands English, which is of course helpful!  She had her heart repaired, her tonsils and adenoids removed, she had tubes placed in her ears, and she has received glasses to correct her vision.

Our little miss has had several years of therapies including OT, PT and speech therapy.  She's had homebound school services for a time, and then 2 1/2 years in the public school system in a specialized classroom for children with special needs.  She's also had 4 years of LOVE.  4 more siblings added to the family.  Four grandparents that have also learned to love and accept her.  A church nursery that has "learned to adapt" along the way to accommodate her in to children's programming.  Continuous oversight by physicians to see any underlying issues or preventative measures that may need to be cared for.  Emma has received orthotics to correct her foot pronation, intense therapy at home and through private therapy to learn to hold her head up, sit, weight bear through her legs, and even to re-train her brain what a reciprocal movement is.  Eventually to WALK at 8 1/2 years old!

More than anything, Emma has learned to ACCEPT AFFECTION!  She has a special place in her life for her Grandaddy... she will even leave a full plate of food to go hug him and demand she be held by him!  Her mom and dad... we've come a long way too!  We have learned not only to LIKE her, but to LOVE her unconditionally... to an extent that in the first year or two I continued to question whether we would be able to fully do or not.  Now, I know that love takes time.  But... it is absolutely a DECISION.  One worth EVERYTHING.

The Autism Diagnosis: What Autism looks like for THIS post-institutionalized child with Down syndrome

Why so specific?  Because every child is different.  Every story is unique.  Every child with autism, whether or not they have a dual diagnosis, will present differently than another.  This is our Emma, and what things we experience with her which are different than a child that may have JUST Down syndrome.

***Let me note, that several of the things I'm going to list below are also signs of OTHER things, and NOT Autism.  It's really the "whole package" which determines that it is Autism that Emma has, and not Down syndrome with either sensory processing disorder, or something similar to that.  Two of our other children have SEVERAL of the issues described below, but they don't have them ALL.  And we have no concerns that either of them has Autism, however they definitely do have other sensory difficulties :)***

Here's a list of the things which I wrote out while waiting at the doctor's office this morning which describe ways that Emma is "different" then most children, even those with Down syndrome.  They're in no specific order, just written down as I thought of them, and there are likely others that I'm missing...

• No initiated social interaction with peers
• Inappropriate responses to children- hitting, pushing, throwing things
• Self-injury: used to bite hands, put hands in mouth to gag area, and still scratches herself when uncomfortable and pops joints in and out
• Little or no imaginative play: will mimic rocking a baby and patting, but on her own she hits, puts a book over the doll's head and covers the head and torso with a blanket.  She sits dolls up and bangs their heads against walls, and cannot stand to have clothes stay on the doll.
• Obsessively overturns furniture: chairs, kids' picnic table, small trampoline, stools, kid's shopping carts, etc.
• Flaps books, papers, plates, frisbee.  She prefers flat round objects like toy plates. She puts them against her lips to do this often times.
• Chews anything soft and puts them in to her mouth and down her throat even.  Stuffed animal appendages, stuffed doll hands and feet, stray socks, pillowcase and pillow corners, sheets and blankets, etc.
• Very little meaningful communication: lots of (repeated, constantly) sounds and will mimic "Emma" or "Mama".  Can show signs for many words (baby, self, some alphabet letters, food words, animals, colors, mom, dad, etc.- probably 30-50) but rarely initiates using signs for useful communication. 
• Doesn't answer questions- repeats a part of what's asked: for instance "do you want more" she replies "mmm" and signs more.  A second later (even before receiving more) "are you all done?" she replies "ahh" and signs all done and begins to leave.
• Refuses many food textures: deli meats, fruits such as banana and grapes, most "gooey" solids.
• Doesn't follow directions outside of her routine or with multiple steps.
• Craves firm touch, spinning, brushing, loud music right at the ear, etc.
• Laughs when others cry
• Often doesn't respond to pain at all
• Is easily upset in new situations, unfamiliar surroundings, and new people.
• Behaviorally goes from one extreme to another, especially in new or stressful situations.  One minute clicking joints, crying uncontrollably... next minute uncontrollable laughter.
• Doesn't understand social appropriateness: belching/gas passing is ABUNDANT when she's uncomfortable, especially.  Also blows her nose with no tissues but won't blow in to a tissue, etc.
• Not toilet trained at 9 years old.  Can hold urine, but doesn't associate it with the toilet.  Will sometimes go in the toilet if timed well, but isn't anywhere near consistent with it.
• Throws everything in her path when trying to get somewhere (especially when scooting instead of walking)
• Affection is very much on her terms: high 5's, hugs, holding hands, etc is ONLY when she is initiating or accepting of it.  If she isn't, she's adamant that she doesn't want the touch or attention.  She will do this with adults, however with children she almost always pushes them away.  She may accept one minute, and the next minute refuse any attention or affection.
• Lack of reciprocated responses: Emma will occasionally respond "hi" or "goodnight", usually after prompting.  She will often say "bye" in uncomfortable situations, presumably to escape sooner :).

There is no greater gift, than to be able to raise a child entrusted to us by God, and to love her, learn from her, and to care for her. 

In other places, she'd be described as broken, damaged, retarded, useless, unworthy, incapable.  

In our eyes she is perfect, precious, lovable, a sister, daughter, friend, a wonderful gift, a precious life. 

James 1:27 "Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world."