Content Amidst the Chaos

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The words I couldn’t find September 17, 2010

Filed under: autism,S2,Uncategorized — jps23 @ 8:52 pm

My friend, Preacher, who is oh-so-good with words, has posted something about my sweet Cowgirl’s baptism.  Now, I’m again blowing our cover a little, but it’s for Jesus, so that’s okay!  She said it all WAY BETTER than I ever could have.  Fair warning, grab a tissue before you get started.  I must also note that Preacher is no longer our church’s children’s minister, due to this crazy idea to pursue a master’s degree in the Jesus field.  🙂  She returned to baptize Cowgirl, and our very new children’s minister went down front in the old people’s traditional service barefoot with Cowgirl to take her confession, risking judgment for such an act by people who barely even know her.  My heart was so full that day.  Read about it here.

 

So he does have fingernails? August 29, 2010

Filed under: S1,S2,S3 — jps23 @ 1:29 pm

Yesterday, we were outside in our backyard trying to take down a tree.  Don’t laugh.  It was only a little dogwood.  The problem we are having with it is A) it’s in the middle of everything, kind of in the way, and B) it had two trunks, with one trunk no longer producing leaves or flowers.

just behind Cowgirl's head, to the left of the swingset

What does this have to do with fingernails?  Well, while we were working on taking down a dogwood with a hand saw (wrong equipment, I know), Picasso asked why God couldn’t just clip His nails so that one could fall out of the sky and chop the tree down.  Yeah, she comes up with stuff like that all the time.  I explained to her that God doesn’t have fingernails.  Jesus was the form of God who came to earth  to live as Man, so He would be the one with the fingernails, not God.  Then we continued to take down the tree.

Fast forward to today, when we were sitting in church.  Now, this is a complex path to follow, so if you’re tired, you might want to come back later when your faculties are in better working order.  Today was Homecoming Sunday, and Family Sunday, which means the elementary kids attend worship with their parents, and because of Homecoming, that would be in the traditional service with hymns and choral presentations.  Now, our contemporary band did a bluegrass mix of hymns, which livened it up a bit, but these kids are used to rockin’ sing-at-the-top-of-your-lungs kind of stuff in their service that goes on each Sunday morning upstairs.  Anyhow, they displayed the words to the music on big screens, and the back drop for one of these screens was a picture of three crosses, like the ones on Calvary.  Cowgirl whispered to me, “Why are there three crosses?”  I told her I’d explain after church.  Then Picasso asked, “Why did Jesus die on a cross?”  I told her the same thing.  I mean, she knows that He died on the cross for our sins and because He loves us, but she didn’t know WHY someone would put Him on a cross to die.

So, after church, we commenced our conversation about the three crosses and why He had to die on one in the first place.  When I explained that Jesus came in the form of man to live on earth, but that He is also God (the Trinity is hard for kids), Picasso replied “So He does have fingernails?”  I just couldn’t help but laugh!  Here were are being all deep and theological about the three crosses and why Jesus was put on one by religious leaders who didn’t believe Him to be the Son of God, and that’s what comes out of her mouth.  She then goes on to ask why the guy who was preaching talked about food in his sermon so close to lunch time.  “Didn’t he know we were all hungry?”  She also asked about the big black speakers that were hanging in the sanctuary, wondering why they couldn’t just put some glitter on them.  These were their Family Sunday reflections!

I laugh, but we also had a very serious conversation about some big things.  Cowgirl wanted to know about the three crosses.  They wanted to understand the process of how someone dies on a cross.  They wanted to understand what would motivate someone to allow a person, especially Jesus Christ, to die that way.  They also realized that though this was a horrific and painful death, that Jesus was willing to do it for us.  That because God the Father loves us, He sent His Son to live and walk among us, and eventually die a painful death on a cross for us, so that we could walk with Him eternally by allowing the Holy Spirit to live within us.

What did you learn at church today?

My little theologians

 

Blowing our cover July 24, 2010

Filed under: autism,S2 — jps23 @ 11:12 pm

I started out with nicknames for us because that’s what I had read you should do.  Be anonymous for the safety of your kids.  So I have tried that, and I’m fine with keeping it this way, but then I read Preacher’s most recent blog post.  And I had to share it with you, even though it has my daughter’s name in it.  It’s too good to not share, so I’m going to blow our cover by sharing it with you here, or actually there.   Now you know who we are (as if you didn’t before).

 

Camp Clean Up June 1, 2010

Filed under: Our home,S1,S2,S3 — jps23 @ 6:48 pm

The title speaks for itself.  We are spending the first “official” days of summer cleaning up things around here.  I don’t know how you mommies who work full time actually pull this off.  Oddly enough, with us all home, I think we can do a better job of keeping things clean around here than when we were here part time and at school the other part of the time.  Well, enough is enough.  I need to change some habits in myself and in my children, so here goes.  Each day, we will tackle one room and clean it top to bottom.  We will take two small snack breaks and a break for lunch, otherwise we do nothing else until this is done!  Today we started in the girls room.  I didn’t take before pictures, and the room was honestly so awful, I probably wouldn’t have posted them!  You see, I don’t care about cleaning house or rooms simply because there are so many people here, it takes a matter of seconds to undo what took hours to do.  However, since recently finding out about Earnhart’s dust mite allergies, I’ve got to make a change.  We all have to make a change.  Here is the end result in the girls’ room after about five hours or work, total, in their room today.

The stray dolls were dropped off the beds by pesky brothers!

Wow! There are floors!

Their closet is finally clean enough to paint!

That’s the vacuum arm that I left laying in the floor.  My camera battery was dying, so I didn’t have time to pull it out of the way before getting the shot!  Tomorrow, we tackle the family room.  One day, I’ll post about room names.  They are ever changing in this family!

 

She’s doing such a great job, so why do I cry? April 19, 2010

Filed under: S2 — jps23 @ 7:32 pm

My cowgirl makes me cry EVERY LESSON.  She’s been taking riding lessons for about two months.  She has made amazing progress that blows my mind.  She does things on that horse that are a struggle for her to do anywhere else.  Why?  Some might say that she likes horses and it’s stuff she wants to do, but I can assure you that it isn’t that simple.

Our cowgirl is special.  Yes, all our children are special, but when I say she is special, I am referring to the paperwork that says so.  When she was just 21-months old, she was diagnosed with an autism spectrum disorder.  Really?  Yep.  We were having some struggles with our sweet little second-born, and she seemed to be delayed in many areas.  The one that got the pediatrician’s attention was the language.  I wrote it off to kids developing at their own pace and maybe Picasso moved fast because she was the first and had all our attention.  At 16 months, Cowgirl only had three words, and even then, they weren’t used consistently or with meaning attached to them.  So, we began a process of testing to see what was going on.  We evaluated with Children’s Healthcare of Atlanta, and it was determined that she had a significant delay.  Duh.  However, since they are so amazing, effective, and well regarded, they had a long waiting list.  In the meantime, we were referred for a hearing test and we were briefly introduced to a program called Babies Can’t Wait, for the time while we were waiting.  She passed the hearing test, so we were left with the Babies Can’t Wait people and the CHOA waiting list that seemed forever away.

Babies Can’t Wait is a social program set up to aid babies with developmental issues.  This is where I struggle with politics.  I can’t complain about social programming when my child was unlocked from her prison with the help of some amazing people in this program.  You can knock social programming all you want, but wait until your child is in this place and all testing and evaluation, if you can even figure the system out, is way out of your budget and/or means.  We were called and evaluated, set up with testing and starting a specific program for her all before we were ever reached on the CHOA waiting list.  BCW is a program that works on behalf of babies up to the age of three under the guise that their brain can be remapped (neuron connections and so forth) if you work with them early enough.  AND, they come to your house!  So out comes the team of evaluators: my service coordinator, a special instructor, a speech therapist, and an occupational therapist.  They observe Cowgirl and me interacting in a natural play environment and take notes.  I just want to know what’s going on, so I’m not nervous or threatened at all, and amazingly, Cowgirl seems to be able to tune them out pretty well.  (I find out later that her reaction to them wasn’t necessarily “amazing”, but typical of kids with this disorder.)  They observe, we chat about symptoms, signs, and peculiarities, and they ask me “Have you ever thought she might have autism?”  Uh. No.  My only interaction with autism was a girl I went to elementary school with whose brother had autism and was so severe that he was without language and did a lot of grunting.  That’s not my daughter.  So I told them no, that I didn’t know much about autism, and they pointed out the red flags they saw in her or found in some of my statements regarding her behaviors.

  • limited eye contact
  • delayed language
  • inability to calm herself when upset (intensity)
  • lining up like items (not a red flag, but an oddity common in autistics)
  • perseverance (obsession) on particular items, objects, or toys
  • sensory sensitivities

So we set out on a path of therapy with our team, and I jumped in head first to books, articles, and information on the Web regarding autism.  Will she talk?  Will she relate to others?  Will she ever say, “I love you, Mommy”?  What did this mean for her and for us as a family?  Those days were so hard and exhausting, but I had an amazing team helping me through it and a supportive husband holding me up.  I also had an enormous God who knew what He was doing when He made her.  It might be an obstacle, but He makes no mistakes.

And these days, it’s hard sometimes to even see it in her.  We still have days, and every day there’s a little piece of her autism that shows itself, but it isn’t always a negative thing.  She loves animals, and she has had an obsession with one type or another ever since she could hug one.  We started with elephants, which she still loves.  Then we moved to butterflies.  We spent one day going to six, yes six, different stores to find a bathing suit with butterflies before going swimming because my MIL had kept hers to wash.  She could not even think about wearing a suit that didn’t have a butterfly on it.

After butterflies, it was whales, and after whales, it was, and IS, horses.  You also will often see her perseverations in relationships.  If you are her friend, you are her BEST friend!  It doesn’t matter your age, either.  She wants to be with you always, hug you, and make sure you know how much she loves you.  This sounds sweet, but it can freak out some people.  She can also perseverate on things like how she forms a letter or whether or not her numbers in a math problem line up just right.  She can get extremely upset if things don’t go just so, and she has a very difficult time bringing herself back down.  It’s easier now that she understands her stuff better and she can vocalize her sense of overwhelm, but it’s still hard when she is so upset that she screams so loud and intensely that she loses her voice.

The sensory side of her autism is tricky.  She is what you would call an “avoider”.  She can’t stand certain touches, textures, sounds, and smells.  Socks were a big deal for her.  She HATED the seams to the point that she couldn’t wear them unless they were seamless.  She also likes to wear as little as possible, because that means less is touching her skin.  She can’t wear loose clothing, like baby doll shirts, and she says it’s too wiggly.  Her shoes, jeans or pants, and even her underwear have to be very tight.  She was always so loud as a little person, but we learned that it was her coping mechanism for drowning out the excess noise she couldn’t handle.  This past Thanksgiving, a person in the neighborhood behind us was cutting their grass, and she couldn’t handle hearing it.  Some days she can, but we had family over, and when there is a lot going on, it’s hard on her.  The great part was that she has learned how to handle it.  She simply told me that she needed to go inside and lay down on my bed because she needed a break.

Now, the good side is that she loves more deeply, appreciates more greatly, and tries harder than most.  The last one is hard because it doesn’t seem fair that everything is harder for her, but she knows that pushing through is the only way she will experience life in a memorable way.  I’ll leave you with a great little story that explains what it is like to be her mom (and dad):

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.                               Welcome to Holland, by Emily Perl Kingsley

 

She’s ready for Him February 9, 2010

Filed under: S1,S2,S3 — jps23 @ 9:31 pm

Our sweet firstborn daughter has made the biggest decision of her life.  She is ready for Christian baptism.  Honestly, I have felt this decision was made by her even before she could say Jesus.  Picasso has always loved Jesus.  She once wanted a Jesus-themed birthday party.  She has loved Him all her life.  She is now just two months shy of turning eight years old.  She has been asking about baptism for the past couple of months, here and there, but we have been talking about it a bit more in the past few weeks.  The conversation about a week ago went a bit like this…

Me:  So, are you ready to consider being baptized?  (Remember, we’ve had a dialogue going on about his over the past few months.)

Picasso:  But Jesus already lives in my heart.

Me:  Yes, but the Bible tells us that He wants us to follow that decision in Christian baptism, telling others of our love for him.

Picasso:  I just don’t want to be baptized yet.

Me:  Why not? (she makes a face)  Do you not want to get up in front of everyone? (she is terrible shy outside of this family)

Picasso:  (Shakes her head)  No, I don’t want to do that yet.

Me:  That’s okay.  Just keep praying about it, and you will know when you are ready.

I really felt like God would give her the confidence she needed to get up in front of the church when it was time.  I didn’t know she would find that from Him so quickly.  She looks at me two nights ago and almost whispers to me, “Mommy, I’m ready to be baptised.”  I wanted to jump up, shout for joy, and squeeze my sweet little girl, but I held back a bit and calmly asked, “What changed your mind?”  She went on to tell me that our children’s minister said some things that morning in worship hour that made her think.  Since our children’s minister likes to talk to them before they walk down before the church, and since she is one of my very best friends, I sent her an email letting her know what was going on.  She’ll be talking to Picasso tomorrow evening.  I’m so excited that she has made this decision to live life for her precious Jesus!

On a side note, Mary Lou piped in to say that she was also ready.  Now, she is five, so I am a little hesitant.  However, she has also loved Jesus with all her heart, and she doesn’t hesitate about much that she wants to do.  She’s learned way more than I did about God at that age, and she has always acted about a year ahead of her true age.  Part of that is the two older sisters, but the other part is simply her personality.  Our children’s minister will also be talking to her this week to see what she thinks.  When I asked her if she understood what being baptized means, she said that it means “My sins are all washed away and Jesus lives in my heart as my forever friend.”  Even if she doesn’t move forth with Christian baptism just yet, living with this frame of mind is a great start!

As for Cowgirl, she didn’t hesitate to say, “I’m not ready to be baptized yet!”  Don’t worry sweet girl, we’ll get there.

 

I know a girl who loves horses February 6, 2010

Filed under: S2 — jps23 @ 7:35 pm

Today was Cowgirl’s first horse riding lesson.  She’s been counting down the days, and it has been raining and cold for THREE WHOLE DAYS!  I asked her instructor if we could just come by and see the stables anyway, so she wouldn’t be grossly disappointed, and she agreed.  She also let Cowgirl ride a bit, which was a wonderful surprise to both Cowgirl and me.  I don’t know if you remember from a previous post, or from just knowing us, but CG has an autism spectrum disorder.  One of the tendencies of kids like her is called perseveration, which basically is like obsession, only with a much less negative connotation.  Horses have been a perseveration for CG over the past two years.  I couldn’t identify the origin, but she has always loved some type of animal.  It started with whales, and belugas to be specific.  Then is was butterflies (which I realize aren’t animals, but they are a living creature).  We spent one day going to six different stores to find a bathing suit with butterflies on it because her grandmother had kept her bathing suit to wash, and no other suit would do.  She loved Diego at age three because he was an animal rescuer.  I even made her a bathing suit that year out of a boy’s Diego suit and a color coordinating girl’s suit because she didn’t understand gender marketing!  It became horses when she was about four, and that love has only grown stronger over the last two years.  Fortunately for us, a few friends led us to her instructor for horse riding lessons.  Of course, before really knowing her, CG is her very best friend, and it isn’t freaking out our instructor.  She seems to be cool with CG’s obsessive love.  I am so thankful.  Today was one of those days I stood and watched my baby girl with tears in my eyes.  When we received her diagnosis four years ago, I didn’t even know if she would ever say “I love you.”  She has said that and so much more.  Horses are commonly used in therapy for many children with different types of special needs.  I can’t wait to see what this experience will do for her.  If it does nothing and she just loves it, then that’s fine too.