Life Is Like a Box of Chocolates

I didn't use to drink coffee.

I use to sleep good every night.

But then again, I didn't use to be a mom to autism.

Last night we had some wonderful friends over that we haven't seen in a few years. Now, I normally am a strict mama about bedtimes, but we were having a fun time visiting so the boys got to stay up and play. The boys finally settled down around 10:45 (2 hours and 45 minutes past their normal bedtime). Erick and I fell asleep like 2 seconds after them.

Around 1:30 I was awoken by Erick and Jacob standing in our room and Erick whispering to me that Jacob had thrown up in his bed. This isn't a new thing. There have been many, many times that he has done this with no explanation, leaving Erick and I scratching our heads as to why it happened. We cleaned Jacob and his bed up, all the while he was being such a sweet little boy. We all settled down a good 30 minutes later...or so we thought. About 5 minutes after laying down in bed, we heard his heavy little footsteps stomping down the stairs. Let me just say, that when Jacob gets woken up in the middle of the night, he has a hard time going back to sleep. Erick coaxed him back in bed and this time it was a success. But just a few short minutes later, we heard the other little sleep depriver crack open his door and say "I want someone to sleep with me!" At this moment I was about to scream "ARE YOU KIDDING ME!!!" I politely told him "no" and told him I would turn his lamp on for him. He took me up on that offer and back we all went to our rooms. I didn't sleep worth a lick after all the commotion,

My alarm never wakes me up in the morning. Not because I'm a heavy sleeper, but because my 52 lb. led foot that lives in my house wakes me up by stomping down the stairs, way earlier than I anticipated with the setting of my alarm clock. However, this morning, my alarm clock woke me up. Then the snooze woke me up, and then the snooze woke me up again. Everyone was still sound asleep. The summer school bus was to be arriving in ten minutes, but Jacob was still knocked out asleep in his bed. I know this because he wasn't rocking, which normally means that the beast is beginning to stir. I made the calculated decision to let him sleep and tell the bus drivers he would not be riding with them today.

I jumped back in bed to catch a few more minutes of rest. Erick was scurrying around getting ready for work as a thought came to my mind..."I have no caramel macchiato creamer left!!" You know those moments when you know you have one chance to get something right. This was that moment for me. I jumped up, got dressed and headed for the door in search for my sanity, aka coffee creamer...cause let me just tell you, it's all about the creamer. Caleb has already gotten up at this point and we are being extremely quite, tip toeing around so that Jacob can get some rest, because if he wakes up, he's NOT going back to sleep. I'm headed to the front door, holding tightly to my keys as not to make any noise. I open the front door quietly and with no warning, like it has never done before..in the ENTIRE 4 years that we've lived in this house, the smoke alarm goes off...RIGHT OUTSIDE of Jacob's bedroom door. I ran as fast as my 30 year old legs could run up the stairs and start jumping up in down in hopes that in one of those jumps my finger would hit the silent button. I continue doing this as if Jacob miraculously didn't ear it. I finally manage to turn it off...or so I thought...and in the quietness of the moment I could hear Jacob softly through his bedroom door mocking the sound of the smoke alarm, "beep, beep, beep...beep, beep, beep. It was done, it was over.

I walked out to my car, still desperately trying to make it to the store to get my Heaven in a bottle. I opened my car door and to my surprise, Caleb's booster seat is sitting in the driver seat. It immediately made me think of Jessie, my sweet short friend from high school. I teased her about needing a booster seat to drive her car when she turned 16. Then, I remembered last night, while we were eating dinner with our friends, my car horn going off. It was obviously not my car alarm going off but it was the sweet chubby hands of my four year old we like to call Rambo. It was the memory of my car alarm that made me realize why that booster seat was sitting there.

As I was running through the grocery store, hurrying to get back so that Erick could leave for work, I realized that life is just plain crazy sometimes. It's crazy with kids, it's crazier with boys and even crazier with autism. I remember a time when each of my days felt like I was just racing around trying to keep my head above water and looking for something to just make it better. Whether it be caramel macchiato creamer, retail therapy or facebook. These crazy days are becoming fewer and farther between and I'm thankful for that.

I returned home to both of my boys playing and giggling together in the living room. We then were able to sit down together to eat some bacon and eggs, a rarity at our house to eat breakfast together. Even though we were talking about poots, butts and burps, I was thankful for that moment. Without the chaos of the morning, that moment wouldn't have been as sweet.

So Things have changed...

I love to drink coffee.

I can sleep when I'm dead.

I am a mom to Autism and Rambo.

Life can be crazy but at least it's not boring!!

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