Autism Is A Beach

It was a few days before we left for the beach when I told Jacob where we were going and what we were doing. This trip would be a little different. Instead of traveling the entire four hours to Orange Beach, I decided it would be fun to spend the night with one of my high school best friends. She's about to be receiving her greatest blessing, one that she's longed for years for. A baby. A daughter. I wanted to hear all about the story of their adoption journey. I also wanted to plumage through her cute pink, flowery clothes. I know nothing about cute, pink, flowery clothes. I can tell you all about madras plaid shorts, polo shirts, dirt, race cars, jeeps...oh and let's not forget the doors!! Oh gosh, the doors!!! I also know more about Hot Wheels cars than I ever desired to know. Jacob couldn't grasp why we were staying somewhere along the way. He pestered me, relentlessly, for 2 days. He badgered me about why, where, when, who? It got to the point that I wanted to just stay at home. I didn't want to be in the car for an hour and a half listening to him say "mommy" for the thousandth time.

We made it through the first night on our trip and packed everything up to head to the beach. Now he had moved on to asking "Mommy, now we're going to the cabin?" every few minutes. Even Caleb started sighing and saying "She already answered you!!" I really wish I could find a way to calm his anxiety about our plans. I've just started explaining to him that it makes me angry to answer the same questions over and over. 

We arrived at the beach. Went onto the sand and immediately his anxiety about our plans was gone. He'd arrived. Arrived at, what I believe is, his favorite place on earth. He seems free at the beach. I love watching him run around on the beach. He doesn't have to talk to anyone and he can run around unhindered by rules and plans. 

Jacob seemed very normal at the beach this time. He seemed to enjoy time with the family and his time alone playing outside. He encouraged play with the neighborhood kids and enjoyed being with them. He even rode around the block with my dad and Caleb on his scooter and the whole time he was calling my dad "Captain." This time was easier. It's almost as if I had forgotten that his autism hinders him so badly. It's almost normal. Well except for when he grabs a box of Pop Tarts off the counter and darts away from my sister in law, runs halfway down the street laughing and screaming "these don't have gluten in them, I'm going to eat them!!" 

I remember growing up looking forward to the beach and hoping that the red flag wasn't out. Praying that it didn't rain and that the waves were perfect. I also remember the times that the rain would come out of no where and we'd grab all our belongings and scramble to shelter.

Autism reminds me of the beach. Beautiful. Constant, yet unpredictable. It's like being so excited to finally get there only to find double red flags. It's getting your umbrella, chairs and beach blanket set up perfectly and then in rolls the rain and you have to pack up and run for shelter. It's relaxing by the shore and getting clobbered by an unexpected wave. It's the beautiful calmness of the view and then feeling the gritty sand in unwanted places. It's the beautiful water crashing onto the shore only to be bringing in jellyfish and seaweed. It's the lulling sound of the ocean and then you hear the faint sounds of your child..."mom, mommy, momma, mom, mom, mom, mommy, momma, mom, mom, mom, mommy, mom, momma, mom, mom, momma, mommy, mom, mom, mom, mom, mom, mom, mommy, mom!" It's standing next to something so beautiful but something that's bigger than we can ever imagine with scary unknown things lurking in the water.

Regardless of all the things that could go wrong, we come back year after year to this special place to take in the beauty, to feel the sand between our toes, to stand next to something that's bigger than us and to hear the waves crashing on the shore.

Autism is a beach...beautiful, constant, unpredictable, special.

My Napoleon Dynamite with Kevin Bacon hair.

  

The Other Woman

She appeared in my life about 4 years ago. I knew who she was, but she obviously knew him better than I knew her. She was cute and petite with gorgeous blonde hair and blue eyes. I never imagined that she would have such an influence over him.

She has now spent the last 4 years loving him. Stealing his kisses and his hugs and spending more time every day with him than I did or could. I want to cry almost every time I see her and I continue to send him off to her every morning. She obviously loves him, almost as much as I do.

Her love for him came as a shock to me. I never thought another woman could love him like that.

Her name is Caroline Poole.

She's the best teacher Jacob could ever have.

When we moved to Auburn 4 years ago I knew that we were making the right decision. Not only for Jacob but also for the rest of our family. We've flourished here. Jacob has flourished here. He's flourished more than I ever dreamed and we owe it all to "Poole." 

We didn't choose autism. We didn't ask to have a child with autism. Most of the time we don't know what to do with our child with autism. Caroline chose to be with autism. She chose downs syndrome, she chose cerebral palsy. She chose to spend her days with difficult children and I am in awe of that decision. Even more, I am eternally grateful for that decision. 

Caroline may be petite but her feisty personality fits well with Jacob's sporadic temperament. He loves her, he trusts her and respects her. She can get him to do his school work and behave unlike anything I've ever seen. I have to admit, I'm slightly envious of that!!

As I took the end of the year teacher gifts to school today I debated on whether or not to even wear eye make-up. I always get teary eyed when I see how much she loves my boy, but I knew today would be even harder. He's been with her for so long that the thought of him moving to a new school terrifies me. It breaks my heart to know that this time in Jacobs life is over. I know he will have good teachers and that he will be taken care of. Nothing can compare to the love that they share. The saying "You love the people that love your kids" is such an understatement when you're talking about your kid with special needs. That love magnifies more than I can ever explain.

This week marks the end of an era and a turning of a page in Jacobs autism story. I'm thankful that "Poole" doesn't fill up just a page but yet a whole chapter. She's shared the good times and the bad. The joy and the sorrow. She's part of our family whether she likes it or not. 

So in three days, with tears in my eyes, the phrase "School is cool with Poole" will leave my mouth for the last time as I send Jacob off to the other woman that loves him almost as much as I do.

~We Love You Poole~

But I mean, who couldn't love someone who's name is Caroline Sprinkle Poole!

Thank you so much for the hours that you put in to teaching Jacob about school, life and love. You have been a rock, you have been a safe haven and a true friend to him. I could never thank you enough for all that you've done to make him feel loved and special!

     

    

     

My Faith, Mirrored by Autism

     All throughout my life I've heard sermons and speeches about our relationship with Christ being like a marriage. They relate to Christ as the husband and his children being the bride. It is a beautiful love story that is meaningful to us because we understand the devotion a marriage has and has to have. It's a very biblical portrayal that we can relate to and make tangible. However, I've found myself lately relating my relationship with Christ more to a parent/child relationship than a marriage. Even more so, relating my relationship with Jacob to the one that I have in Christ.

     I think one thing that I desire most about my relationship with Jacob is to be able to communicate with him. It's the one thing I believe all parents that have kids on the spectrum would agree on. Jacob is verbal, and I'm very thankful for that. Many kids on the spectrum are non-verbal and I can't imagine what that is like. Even though Jacob is verbal, our communication is still very broken. It hurts me not to know what he's thinking and feeling when he's hurt, scared, sad or confused. I long so badly for him to speak to me, understand me and for me to understand him. It makes me ponder my relationship with Christ. Even though I am a believer, my communication with him is so often broken. I think about how He longs to hear from me. How He loves me so much that it hurts him when that communication is broken. I think about how he wants us to share our emotion with him when we are hurting and broken. He wants to carry our burdens just like I want to carry Jacobs but when there is a breakdown in communication, it's impossible. It hurts.

"Cast all your anxiety upon him

because He cares for you."

1 Peter 5:7

     Lately, Jacob has been stuck on asking me if I love him. My life reads like that annoying Family Guy episode..."mom, mommy, mom, mama, mommy, mom, mama, mom, mommy, mom...WHAT?... do you love me?" This is a conversation I have, oh, about, 800 times a day! It gets very old, very fast. I tell him "only a little bit," and he says "you love me a lot!!" I try not to lose my patience with him. I'm not really sure if he just likes the repetitiveness and it's comforting to him or if he feels insecure. The conversation always comes when I'm trying to do something else or I'm just extremely tired of answering the same question over and over and over. I think about how often I've begged God to show me, somehow, that he still loves me, even though he proves it to me daily. Jacob doesn't understand all the things that I do for him out of love, he just needs to hear me say that I love him. Just like we don't understand all the things that Christ does for us out of love, we just need to hear that He loves us over and over again.

 "For I am sure that neither death nor life,

nor angels, nor rulers, nor things present, 

nor things to come, nor powers, nor height, 

nor depth, nor anything else in all creation, 

will be able to separate us from the love of God 

in Christ Jesus our Lord." 

Romans 8:38 & 39

     The other conversation he gets stuck on, is asking me if I can see him. I like to tell him that I can't and that he is invisible. It makes him smile, but he still continues to ask. I can remember many times throughout the months leading up to and the months after Jacob being diagnosed and for a few years after, asking God if he could hear me. I felt so alone for a long time. As if God had given me this beautiful child with autism and then walked away from me. I was angry, alone and hurt. I wouldn't be able to tell you how many times I asked God, do you see me and can you hear me? Why have you forsaken me?

"Be strong and courageous, do not be

afraid or terrified because of them

for the Lord your God goes with you

he will never leave you, or forsake you."

Deuteronomy 31:6

     When I think about these things I am reminded of how much I love Jacob. But even more, I am reminded that God loves me more than I can ever imagine loving Jacob. He does love me, He does hear, He does see me and He wants a relationship with me. This is what I hold on to. This is what I long for! 

     

   

My Own Awareness

     For some, autism awareness comes around once a year. They read about it, hear about it and may get involved in it. The month of April passes and they go about their year not really thinking about it much anymore. Which is completely normal by the way.

     My autism awareness comes when I open my eyes in the morning and when I close them at night. It comes in the grocery store when the ceiling tiles aren't where they should be. It comes at every bathroom that has hand dryers. It comes at dinner time. It comes off the bus in the afternoons. It comes in the obsessive conversations about doors and shutters. It comes when he's near me and when he's away from me. It comes in the form of love and it comes in the form of frustration. It comes with a sweet, loving, conflicted, frustrating little boy named Jacob...

To the little boy who can steal my heart and break it all at the same time,
To the little boy who's laughter can be obnoxious, yet the best sound you've ever heard,
To the little boy who is my deepest sorrow and my biggest delight,
To the little boy who is my constant reminder of my failures and my greatest accomplishments,
To the little boy who's chaos has become our normal,
To the little boy who loves to make messes, yet keep things lined up in a row,
To the little boy who's smile can mean something suspicious and sweet,
To the little boy who's hugs I never tire of,
To the little boy who can run around on pavement without shoes yet cries when his fingernail breaks,
To the little boy who's love is so overbearing, yet comforting,
To the little boy who makes me feel weak, yet so strong,
To the little boy who makes me laugh even though he doesn't make sense,
To the little boy who enjoys the simple things that make life not so simple,
To the little boy who's tears bring me joy because I see that he can feel emotion
To the little boy who may not remember the words but hums the tunes to his favorite songs...

Keep on singing, keep on humming, keep on being simple, keep telling your jokes that don't make sense, keep telling me you love me, keep hugging, keep smiling, keep laughing, keep stealing and breaking my heart.

You are my autism awareness, you are my joy, you are my life, you are my son. You are God's constant reminder of my need for Him. For that I am thankful.

"Rejoice always, pray continually,

give thanks in all circumstances,

for this is God's will for you in Christ Jesus."

1 Thessalonians 5:16-18

The Countdown

     It's the week of Near His Heart!! I'll be scrambling around as usual in the next few days finishing up last minute errands and details to make the night special. I'm blessed to be just a fraction of such an awesome planning team. I love the heart of everyone involved.

     Throughout the planning process our minds are focused on all of the families that will attend. We focus on making them feel encouraged, loved and uplifted. The joy that it gives me to see these families come and enjoy their night out makes the 6 months of planning worth it. I know full well what it means to them because I know first hand what it's like to live with a special needs child. I sometimes don't realize how much I'm blessed by Near His Heart; I'm so busy planning and getting things together that it's not until the week of the dinner that I sit back and think...Hey this night is for me too!! Most of the time, that thought comes in a moment of frustration when I feel lost as a parent of my sweet yet often challenging special needs child.

     Raising a child with special needs is obviously different from raising a child that's typical. However, I think the thing that surprises me the most is the emotion behind raising a special needs child. I get emotional about every decision that's made concerning Jacob. Jacobs hindrances with autism are frustrating, but it doesn't even scratch the surface when it comes to the emotion of my heart. I'm constantly doubting my ability to be his parent and I always second guess the decisions I have to make for him. I constantly have to make hard decisions regarding his future. I worry what life will be like for him next year at a different school, when he gets into middle school and high school. Will he go to college? Will he be able to work? Will he live at home forever? Will he ever get married? Will he have kids?  It's a feeling I've never felt when dealing with my typically developing, yet very rambunctious Caleb. Raising Jacob is a humbling experience on a daily basis. Not that I am humble by any means, but I realize often my need for Christ and his power to work through me and give me patience and humility with it all.

    There is a phrase in the song "10,000 Reasons" that is often my prayer daily. It's not a fancy phrase but it's so often the cry of my heart. There are days that are hard physically, emotionally and spiritually and this is the only prayer I have for that day...

"Let me be singing when the evening comes."

     I'm excited for Friday night to get here. It's a time that I enjoy ministering to other families while in turn these families minister to me. I love seeing their children, I love that they are filled with hope, I love that they have a night of rest, but most of all I love that they hear about the one that is the Great Comforter.

To all of the Near His Heart families, we love you, we care about you and we enjoy seeing you every year!

 



     

Socially Acceptable Christianity

       I recently saw an article about the Duggars disowning a family member for being pregnant out of wedlock. I didn't read the article and I don't plan to. I don't even know if it's true or not. I really hope it's not true. However, this is not a bash the Duggars article. Although I don't agree with everything the Duggars stand for, It was simply the title of that article that brought this issue back up in my mind.

       So many times in the last few years I've witnessed Christians using social norms as the standard for Christianity. Society and maybe even some churches and pastors give us false instruction on how to deal with issues that are taboo or "against" the Word of God. The world expects us to act a certain way and we fall into the dangerous traps of giving them what they want. It's dangerous because sometimes our actions are actually very contradictory to what Christ lived while He was here on earth. Even more than that, He actually called people to do things that were opposite of what the world expected.

       Jesus began going against social norms the day that he was conceived in Mary's womb. She was a virgin. A young girl who would be mocked, ridiculed and made out to be a liar. I can't imagine being put in her position. Then, an angel appeared to Joseph and told him not be afraid to take Mary as his wife, when society was telling him to divorce her quietly. Then move ahead in the story to the time of His birth. He was a king born in a stable. That pretty much sums up my thought on that. HE was a KING born in a STABLE!!! A king should be born in a palace, on purple sheets, while his mother is being fanned with palm branches and eating peeled grapes!!

       Now, Let's go back to the old testament for a minute to a few stories that stand out to me. Rahab. She was a prostitute that hid Christian spies. God rescued her and her family from Jericho before destroying the city. However, the story doesn't stop there. Rahab (a prostitute may I remind you) was in the lineage of Jesus. He used this woman that was a disgrace to society, saved her from death (both physically and spiritually) AND then brought her to be in the line of Jesus.

       Now I know that this next issue is dying with time, but it was once very relevant and to some it still is. I grew up thinking that we aren't supposed to be with someone that is not our same race. I never understood that since I am part Irish, part Indian, Part English and part whatever else. I look at the story of Ruth and Naomi. To make the story short. Naomi and her husband left Bethlehem and went to Moab because of a famine. Now, in that day it was against Jewish law to marry someone outside of their nation. Naomi's two sons both married moabite women, one of whom was Ruth. Naomi's son's and husband both died and Naomi and Ruth returned to Bethlehem widowed and childless. I can imagine what the people in Bethlehem were whispering..."she disobeyed God, now her kids and husband are dead." or "She's a moabite, she'll never find another husband here." However, in a very interesting story, God redeemed Naomi's family with a kinsman redeemer named Boaz, who married Ruth. Not only did God redeem Naomi's family with this kinsman redeemer, but He restored them, then made them apart of the lineage of Jesus.

     My favorite story of the old testament though, would have to be that of Hosea. I like this story because it mirrors so closely the love that Christ has for us. Read this...

When the Lord began to speak through Hosea , the Lord said to him,

"Go, marry a promiscuous woman and have children with her."

Hosea 1:2a

Wait a second, you are saying that God told Hosea (who was a prophet and a man of God) to marry a woman who likes to sleep around? Yep!! Her name was Gomer and they ended up having three children together, all while she was cheating on Hosea. She ended up running away and found herself on an auction block where she was auctioning herself as a slave. Hosea found out that she was on auction, showed up and paid the highest price to buy her back. Is that not the perfect representation of what Christ did for us? God sent his son to this wretched earth to save us and after time and time again of us running from him and sinning against him, He paid the highest price by dying on a cross for you and me.

      When Jesus was on the earth preforming miracles He did some pretty abnormal things to show His truth and love. He spoke to a Samaritan woman at the well. Totally against society. He stepped in when people were about to do the socially acceptable stoning of an adulterous woman. He spoke to a tax collector and went to his house even though he was hated by everyone. He healed a lame man on the sabbath. He touched lepers. He allowed a man into his close group of friends that not only was an unbeliever but also a betrayer.

      So, when I hear stories of Christians disowning and hating others it makes me wonder if we're just giving in to what society expects. Are we letting social norms form our faith into something that is far different than what God's entire purpose was and is. Are we just pharisees that abide by a law with no love or mercy, pushing people away because they are sinners? Or are we lovers of the truth? Are we willing to step outside of normalcy and follow Christ's example of meeting people in their needs first, loving them and then leading them to repentance?

"A new commandment I give to you, 

that you love one another as I have loved you.

By this everyone will know that you are my disciples."

John 13:34 & 35

      

    

      

Naked Thoughts

        I've been mulling this blog over in my mind for the last 24 hours.  This is one where I'm opening up and being vulnerable and sharing things that most people just think and don't actually say.

There are many times in life when my mouth opens and I insert my foot. Last night was one of those times.

A few things before I start...

1. Please do not read this blog if you can't finish it. Parts of this will seem very harsh and I don't want you to read half way through and not read the rest.

2. Judge me when you've read the whole thing, not half way through!

3. I love my son as much as the next mom, but human love is imperfect and I continually pray for Christ to love Jacob through me. 

So, now that that's out of the way... eh hem...Last night!

       Last night I was talking to a very sweet person about foster care and I asked the question, "Is it hard to care for this 3 month old baby when he's not your own?" She simply replied, "Not at all! It's like you and Jacob. You learn how to deal with things and you stay strong no matter what." To which I replied "Yeah but I can't give Jacob back."

Okay, so now I'm sure you are sitting there thinking "Oh my gosh, Corrie, you are such a jerk."
It wasn't until after I left that I realized how that sounded to everyone in the room. You are right, I am a jerk!! However, it's not in the way that you think. My comment was not directed toward what she said but it was an out pour of my own guilt.

When she was talking about how it parallel's to me raising Jacob, I found myself jealous of the fact that she could give the little boy back if things got hard (not that she would or wants to!!) Then I felt incredibly guilty for even letting that thought pass through my mind. Then, it came out of my mouth and I couldn't stop it. But, if I can be totally honest, I have thought that before. I think about what life would be like without Jacob. If I could give Jacob back, would I? I know that I wouldn't, but there are times that life gets so hard and so tiring that my mind will do anything to ease the pain. So yes, there are times that I wish I could give Jacob back. It's definitely not a rational thought though. It's an evil (yet very human) coping mechanism. Let's face it, Things would definitely be easier if Jacob didn't have autism. So, these thoughts creep in like little demons and set up camp in my mind.

I am not proud of where my thoughts go. I am certainly not proud to share these things with you, which is one reason I was debating whether or not I should even post this. However, all day I have been reminded of reasons why sharing could be beneficial...

Therefore, confess your sins to each other

and pray for each other

so that you may be healed.

James 5:16 

He must become greater

I must become less.

John 3:30

       A few people in the recent past have told me that I'm a strong woman and that I'm an awesome mom. I say this not to give myself a pat on the back but to say that it makes me feel like I fraud. While they are talking, in my mind I'm thinking "if only you knew what goes through my mind." I never want my christian walk to seem easy, seamless or put together. Our job as Christians is not to act like we have it all together and judge others that don't. It's to be open, honest and glorify God in our weaknesses. If sharing my depravity (which is human nature, I might add again) brings any glory to God, then it was worth it. I know that my thoughts are hurtful, hateful and whatever other words you want to insert here. But it's much more than just evil thoughts. It displays a lack of faith in the God that I so dearly love and worship. It shows a deeper lack of faith than what is seen. It's a subconscious lack of faith, if you will.

But He said "my grace is sufficient for you

and my power is made perfect in weakness."

Therefore I will boast all the more gladly 

about my weaknesses, so that Christ's 

power will rest on me.

2 Corinthians 12:9

        So here I am being completely honest and open. I am in complete awe of God's continual love and faithfulness through my weakness and in spite of my weakness. I pray His love flows through me like it's never done before, because without His love, I am nothing. It's time that I start filling my mind with these verses...

Trust in the Lord with all your heart,

and do not lean on your own understanding.

In all your ways acknowledge him, and he will 

make your paths straight.

Proverbs 3:5 & 6

Count it all joy, my brothers, when you meet 

trials of many kinds, for you know that 

the testing of your faith produces perseverance.

Let perseverance finish it's work so that you

may be mature and complete, 

not lacking anything.

James 1:4

Come to me, all you who labor and are heavy laden,

I will give you rest.

Take my yoke upon you, and learn from me,

for I am gentle and lowly in heart,

and you will find rest for your souls.

My yoke is easy, and my burden is light.

Matthew 11:28-30

So do not lose heart. Though our outer

self is wasting away, our inner self is 

being renewed day by day.

For this light and momentary affliction 

is preparing for us an eternal weight of glory.

2 Corinthians 4:16