The Gospel and Autism

[[ I typed this post about a year ago after Jackson (then 6 years old) told me emphatically he didn't want God in his life, but decided not to publish the intensely personal and controversial struggle. I'm still worried about it being clear, but something happened today that made me feel like I should share. ]]

Have you ever tried Googling that phrase, the Gospel and autism? You get more useful hits using faith or religion and autism, but I'm often searching for tidbits and info on the things most heavily weighing on my heart. So, I Googled that phrase recently, and found something that struck a nerve.

Before Jackson's diagnosis I thought you didn't have to teach a child to lie, and you didn't have to explain God for them to believe. They just do on both counts. Well, not necessarily. While the self-preservation instinct that causes a child to lie is evident in Jackson in other ways, he didn't figure out lying for a long time, and I don't know when he would have without having learned from his brother and other typically developing kids. He has a big imagination, especially when it comes to super heroes and the tooth fairy, but he seems to struggle more with spiritual things. The way you typically talk to a child about God just doesn't work for him. I think I mentioned before how he reacted to the Sunday School talk about asking Jesus into his heart. It was a traumatic thought for him, asking this invisible God who created all things and was bigger than the universe to enter his little heart. In his mind, this would be painful and might result in an explosion.

Needless to say the communication barrier and the literal, fact based way Jackson thinks has been a serious curve ball for me. During one conversation in which I was trying to answer one of his questions by explaining what it means for Jesus to be IN you and you to be IN Him (and obviously failing at it), Jackson looked at me plain as day and said, "I don't think I want that. Nope. I don't want God." Now, you know why I'm Googling things like 'the Gospel and autism.' It broke my heart, the tears started welling up, and I had to leave the room.

Now let's pause for a moment and examine the tears. I accepted Christ when I was six years old. I can't remember a moment in my childhood where He wasn't present and active in my life. There were moments when I could literally feel His presence surrounding me. I had a little hill overlooking a cattle pasture that was my praying spot. I used to go there, lie on the ground, watch the clouds and the trees and talk to Him like He was right there next to me. I've read through the Bible several times, and each time is new and amazing. My faith is not a religion for me. It's a relationship. Now I've struggled and doubted. Done many things I wish I could take back, at times exhibiting anything but devotion to this God. I've gone through times when my faith was shaken and purged, but in the end (and hopefully TO the end) it only came out stronger. My God is not some distant figure I hear about at church, read about in an ancient book and struggle to please hoping for heaven when I die. He's my father, my brother, my husband, my friend....my everything. I cannot imagine my life without my God, and I look forward to the day I get to see His face, hold His hand and hear His voice. It's a big deal, and I want that for my children.

Wanting that same relationship with God for my children, my heart has obviously been heavy since Jackson's statement. My husband has reminded me that he's only 6 (almost 7), and it's not time to panic yet. But, my heart is heavy all the same. I kept praying, "God, he can do without many things, but he can't do without You." Oh, the restless heart of a mother. Back to Googling the Gospel and autism.

In my search, I landed on an autism forum where someone asked how you share the Gospel with an autistic child. The general consensus was that it's child abuse to teach a child, especially an autistic child, about God. That it is taking advantage of their blind trust in you as their caregiver. According to this forum, you should wait until they are old enough or developed enough to seek faith on their own. At first I was irritated almost ready to join the forum just to rebut their stupid advice. Obviously these people aren't parents. The only love greater than my love for my babies is God's love for me. And, obviously these people aren't religious. When you truly believe something, separating your beliefs from your life, as a parent or anything else, is just not possible. So, if a parent really loves their children and truly believes in the Bible, NOT teaching their children about God isn't an option. While I had plenty to say to those who answered the question, I did not have an actual answer to the question. How DO you teach the Gospel to a child with autism? My high functioning son told me he didn't want God. So, clearly I don't have the answer. Then I started thinking about where Jackson is right now.

Recently, he received a Bible and a highlighter from our pastor during a special presentation at our church. He was extremely excited about the Bible, and almost blown away by the fact that I told him it was ok to mark in it with the highlighter. Seriously, it was like I told him he could have ice cream for breakfast. This might be connected to an incident where his little sister colored a whole page in my Bible with a sharpie and I cried. Writing in books (especially a Bible) is not something he's ever been allowed to do. He highlighted the passage the pastor preached from, and he's been reading his Bible, and highlighting, excitedly since. I'm just amazed at how God can take a simple thing like a Bible presentation and a highlighter and answer the prayer of a heavy heart.

Thinking about the forum question and answers, I couldn't help but wonder. Maybe there is something to allowing a child to seek faith themselves. Maybe all my trying to explain things is making it harder for him to understand. Maybe I just need to let him read while I live out my faith and pray I can answer the questions that are sparked by his reading.

The Holy Spirit is not hindered by the same communication barriers that hinder us. God's Word is alive and penetrating, and I know that Jackson's seeking will find that same father, brother and friend that I have worshipped my whole life.

"You will seek Me and find Me when you search for Me with all your heart."
Jeremiah 29:13

One of my favorite autism blogs shared this in a recent post, and I can't help but share it, too.

"Dear restless heart, be still; don’t fret and worry so;
God has a thousand ways His love and help to show;
Just trust, and trust, and trust, until His will you know.

Dear restless heart, be still, for peace is God’s own smile,
His love can every wrong and sorrow reconcile;
Just love, and love, and love, and calmly wait awhile.

Dear restless heart, be brave; don’t moan and sorrow so,
He hath a meaning kind in chilly winds that blow;
Just hope, and hope, and hope, until you braver grow.

Dear restless heart, repose upon His breast this hour,
His grace is strength and life, His love is bloom and flower;
Just rest, and rest, and rest, within His tender power.

Dear restless heart, be still! Don’t struggle to be free;
God’s life is in your life, from Him you may not flee;
Just pray, and pray, and pray, till you have faith to see."

~Edith Willis Linn

I didn't join the forum or comment on the question, but I thought I would post what I've learned here. Sharing the Gospel with an autistic child is the same as with anyone else, you share then trust, love, hope, rest, pray and let God handle it from there. There are no barriers He cannot overcome.

Maybe the next person to Google 'the Gospel and autism' will run across this post and find encouragement. "Dear restless heart, be still."

Update: I let it go. I chose to wait for Jackson to be ready. I tried to answer any questions and let him take it from there. Some were easy. Some were not so easy. But, today he asked how you become a Christian. We talked through it, and he decided to accept Jesus as his savior. His heart didn't explode, but mine just might. :-)

The Upside of Autism

I've had a lot to say about autism and how it affects my son and family over the past 5 years. I've even been heard saying I'm thankful for it. I'm sure any of you reading this that have a personal connection to this disorder can understand what I meant by that, but I want to retract and amend that statement. I'm not thankful for this disease. In actuality, I hate it, and that hatred grows every day.

I hate autism. I hate how it locks precious children inside themselves, how it hides so much of their spirit from a dark world that needs their light. I hate how it exhausts mothers, fathers and caretakers and leaves them struggling, frustrated and feeling so very alone. I hate how it drives families into isolation. I hate how it affects siblings, how they must learn in an almost backward way that love is selfless and sacrificial. I hate how it divides our families, our communities and our world. I hate how it changes and eludes our understanding. I hate its relentlessness and pervasiveness. I hate that it is so expensive and difficult to treat. I hate how it seems to bring out the ugliest of our ignorance. I hate how it awakens the worst in the least human of our society, those who prey on the week and helpless. I hate the day I first learned what it was and what it meant to my family, to my baby, and to my life. I hate autism, however….

I love my son. I love ALL his differences. I love how hard he's worked and how the struggle with autism has only made him stronger. I love how I have a special place in my heart for Thomas the Tank Engine, Lightening McQueen, Legos and all the other obsessions he's attached himself to over the course of his life. I love that he loves art and music. I love how wonderful it is that he and I can communicate without words when that language barrier proves too hard to break through. I love his laugh even when it's too loud. I love how he jumps and runs and all his other stims even when it causes people to stare. I love that he now 'over expresses' his feelings because he finally gets that I NEED to know and I can't see inside his head. I love the idea that he thinks in pictures, and I secretly wish I could understand what that's like. (I think I would like it.) I love all the wonderful teachers, doctors, psychologists, and therapists that have worked with him, every one selflessly obeying the calling in their life to make a tangible difference in the lives of children like Jackson and their families. I love what I've learned about myself, my husband, my children, and our family. I love how God has used my son's diagnosis to show me the ugliness of MY ignorance. I love how he opened my eyes to all the times I judged a mother struggling in public. I love how my initial response is now one of compassion not just for other mother's struggling, but for those judging them and me. I love how I've learned through this that each of us walk a different path filled with obstacles and difficulties impossible for others to see from the outside looking in. I love the conversations that I've been able to have with my children about how there are people in our world whose brains and bodies don't work like everyone else's, about how that does not make them less, and how they should never be treated as less. I love that each of my children better understand the concept of protecting the weak, and loving the different. I love that this struggle has ignited my fighter spirit, and seeing that same flame in Jackson, I know he'll be ok.

I hate autism, but I love the upside.

What is the upside to autism? That for all the evil it could throw at me, it has only made me a better mother, wife, friend and person, and for that I will be forever grateful.

The Weird Kid

Jackson and I were grocery shopping today. Just the two of us, two birds of a feather. His job was holding the shopping list, and mine was pushing the cart. He really enjoys being in charge of the list, he controls where we go and what goes in the cart. Well, that is unless Mommy puts things on the list in the wrong order or remembers something that isn't on the list. Then he jokingly scolds, "Mommy?!" and either draws arrows to where the item should have been on the list or writes in the missing item just so he can cross it off.

Did I mention he also gets to hold the pen? He loves crossing things off. In fact, I think he might like that as much as his mommy, who may or may not put some things on lists that don't really need to be there just so she can cross them off and feel like she's accomplishing more than she really is. Yeah, see, thats what I mean by birds of a feather. That's my boy, y'all! Same wavelength.

Anyway, we're walking along, and he crosses off the wrong item on the list. He stops and says, "Oh, I'm dumb." He explains, and I reply, "You're not dumb. You know I don't like using that word when we're talking about people. You made a mistake. Mommy's made ten of those since we walked in the store." His reply, "Yeah, but I'm the weird kid.

[Pause for effect]

Cue the rising of my internal mama bear. Who told my baby he's weird? Who? I'll show them 'weird' and several other more colorful adjectives. Just le'me at um.

[A few seconds to process]

Cue the over explaining lesson giver that wants to stop him right there in front of God and everybody and talk about how 'weird' is what people say when someone is different than everyone else, different from them in a way that they don't understand. But, being just like everyone else means you're hiding who you really are. Who wants to be 'normal'? 'Normal' people don't find cures for deadly diseases or write novels people still read and talk about centuries after they're dead. 'Normal' people don't paint ceilings in cathedrals or write music that calms the mind. 'Normal' people don't deliver life saving medicine, healthy food or clean water to the forgotten people on our planet. 'Normal' people don't change the world. They don't even make a ripple in the lives around them. They live and die never accomplishing more than fitting in. I wanted to tell him how I LOVE that he's different, and how I've NEVER wanted him to be 'normal'.

And I did, later.

First, though, that word started flooding my mind. All the references and uses I've made. 'How weird is that?' 'Don't pick your nose. That's weird.' When I thought about it, I figured out that he could have just put together all the things I said were weird, things he probably does and made the inference (crazy how he can do that sometimes now, you autism moms know what I'm talking about, that's a big deal). He could have decided he was weird just from what I have said to him or around him.

Cue the mommy guilt.

There's another word that has been floating around in debate these days, and I never understood just how hurtful it can be until my Jackson was diagnosed with autism. We don't say it in our house, and I don't know if Jackson has ever even heard it, yet anyway. If you don't know the word I'm talking about, its 'retarded'. It's not a bad word, not profanity or vulgar, but it can be a hurtful word all the same. Not just to the mommies and daddies and caregivers and others who love someone with disabilities, but to the disabled themselves. They may not hear and understand or process the way we do, but they get it. They know what it means. And that one word thrown at them carelessly can define how they see themselves even if you never meant for it to.

How does a 7 year old boy with autism decide he's the weird kid? Because in this world, even in our home where I've done all I can to make a safe comfortable place for my babies to grow up, we define normal with our words and actions and demand conformity. He's getting to the point in his development where he sees just how different he is, and words thrown around carelessly, they land differently on his little ears.

"Death and life are in the power of the tongue."

Proverbs 18:21

I want my words to give life, inspiration and encouragement to my children. I don't ever want to tear them down or make them feel inferior.

So, this kid's on a mission. After all, we've got more stuff to put in the cart and cross off this 'weird' list so we can go home and get back to more important things like building lego towers and eating ice cream (which is last on the list because it melts).

As my head swirls from the whirlwind of thoughts, he hasn't skipped a beat, and I tell him, "You're not weird. You're the best kind of different there is, and I love you."

"I need a man's potty."

So, we had to potty at the mall today. We often have to potty in public. I hate it when we have to use a public restroom, but it's been this way since I started potty training my oldest son (now 8). This has resulted in my knowing all the best restrooms in our area, and several on popular interstate routes.

I am no longer surprised when the conversation begins. "Mom, I've got to go to the restroom." "Honey, can it wait?" "No, I have to poop." This child has single handedly cured me of my public restroom phobia. Now I just chant to myself the whole time. "This won't kill us. People do this all the time and survive. I can do this." There are many memories of my children's early lives that have seemed to fade over time. That's code for my psyche intentionally blocking them from my mind so I can continue to move forward and love them with that irrational, all-consuming love that drives me to do what I do for them every day. Case and point, how many mothers do you know that recount their birthing stories with horror? Oh, no. They're all neatly coated in fuzzy happiness because all the pain and struggle gets lost in those beautiful, gunky, squished up faces.

These lovely public restroom situations would be among the blocked chunks of time for me. This is due to the fact that they mostly contain me reluctantly entering this dreaded place lugging my infant daughter in a carrier, my autistic son, Jackson, who was horrified by all the sights, sounds and smells, and this little guy whose bowels only seemed to move in public. I did my best to control Jackson's screaming while keeping my oldest from touching anything he did not absolutely have to touch all the while managing the carrier and diaper bag. I'm getting chills just thinking about it. Things are easier now. Jackson can handle it. My daughter is older and potty training, too. It is generally not a struggle anymore.

...What a glorious day it will be when ALL of my children are out of diapers and pull-ups and asking to go potty in the most inconvenient places....

This time, I made them go into the family restroom so they could all go together and I could be with them. I know it's a little paranoid, but germs and crazy people are everywhere, Y'all. Besides, the men's room was all the way down a hall and opposite the lady's room. There's no way I'm sending my two boys in there without me. This was super embarrassing for my 8 year old who thinks he's big enough to do everything on his own. Upon opening the door we saw a changing table, one small potty, one large potty, one small sink and one large sink. My 3 year old daughter, who can find excitement in the drying of paint, details what she sees out loud with great delight. Jackson goes straight for the little potty, and has his pants down before I can shut the door. Realizing it was too small for him. he then exclaims loud enough for the whole mall to hear (the door is still open, darn hydraulic hinges), "I need a man's potty," and moves to the larger toilet beside him. Meanwhile, I get the door shut and locked and my daughter decides to go all by herself. Her hands are all over the tiny little commode. I see the concentration face and begin to panic. "Not here." I keep repeating to myself. "This won't kill us. I CAN do this. I'll just make sure she washes her hands really good." My 8 year old suddenly decides he doesn't have to poop after all. Besides, it is super embarrassing to go INTO the bathroom with your mom and little sister. Bored with the whole thing, he decides to put his brother in a head lock while he's washing his hands. Water and screaming all around. They are now tussling and I start panicking that they might end up on the floor.

What happens if mom has a public meltdown due to sensory overload? Hopefully, I'll never know. Someone tries to open the door. I'm trying to break up the fight. My daughter shouts, "coming!" And tries to open the door with her pants still down (the concentration face was a false alarm, thank goodness). I start scrambling to figure out how I would explain the scene to a local DFACS officer, while having flashbacks of earlier times. I begin to remember why I rarely left the house for a huge chunk of Jackson's early years.

Mustering up my quick-as-lightening mom reflexes, I stopped my daughter from opening the door, broke up the fight, and got us out of there mostly dry and clean. Emerging victorious and feeling like super mom, we then move on to the carousel as if everything about what just occurred in that tiny little room was completely normal.

I then laugh to myself when the thought of blogging this came to my mind. This desire, to not only record this memory before my brain can force it into the section of my brain I never use but to share it with the world, is quite strange, maybe even insane. But, the best part, the pies de resistance, came later.

We have a bedtime tradition of asking the kids to share their favorite part of the day. I think it started as an attempt to cause them to think about something they could be thankful for every day, but it has morphed into a one-up tournament, most nights anyway. Tonight, though, when I asked my daughter what her favorite part of the day was, she exclaimed with great delight, "going to the bathroom at the mall."

So, on those days when you feel like they should post a sign outside your house that says looney bin, maybe you can think of this post and remember, normal is just a setting on the dryer.

Perspective is Everything

This morning was one of THOSE mornings. While I got up on time and got my shower before the kids got up (a rare treasure during the Summer), that was about the only thing that went right until we were in the car. Jackson didn't want to come down for breakfast. He didn't want to eat what I fixed. He didn't want to wear the clothes I picked out for him. My other children were exacerbating the problem, picking at Jackson and whining about him whining. Every transition was a struggle, and I found myself extremely frustrated. We finally make it to the car and are on our way to our play date. Yes. I was stressing about leaving late to play at a friend's house who would have been more than understanding of our tardiness, and for that matter, a friend that would have been totally fine with Jackson coming in his pajamas, bed head and flip flops. It was somehow too hard for me to just take it all in stride this particular morning. The tension filled my body, stiff and numb trying to clear my head so I don't end up complaining to the other mom the whole play date, I turned on the radio and began to listen to Addison Road's What Do I Know of Holy. Then we pass a funeral procession, and just like I do every time I see one of those, I prayed, "God, help them." Then I'm suddenly overcome and start balling like a baby.

There has been so much death in our friend and family circle lately. Some lost precious children, some fathers, mothers, brothers. Still others are facing deadly diseases threatening to take a loved one away at any moment. I couldn't help but compare my morning and all its frustration to the morning of those following that hearse. One of those mortal moments when the frailty of my own human condition and the fragility of the life in my care brought me to tears. The next few moments passed as my mind was flooded with the remembrance of so many blessings. The blessing of my son and all he is, autism included, stood out in those blessings. As hard as it has been adjusting to the special care he requires, this disease will not take him from me too early, and as hard as it is to handle the frustration that builds up from the life we live, I'm not following a hearse.

Perspective is everything.

Note: I shortened this after rereading it the next morning.

Happy Ever After and a Decade of Real Life

 How exactly do you stay married to someone you have nothing in common with? I wish I could say I have the answer, but "you just do" doesn't really cut it since life tends to be more complicated than that. I guess a better question might be, how did you get married in the first place?

My husband and I don't like the same kind of music, movies, tv, pass times, sports, passions, food, decorating style, fashion, books....I could keep going, really. He's a doctor. I'm an artist. He's concrete. I'm abstract. He went to public school. I was homeschooled. He went to a large secular university. I went to a small private college. He works to provide for our family. I work to keep us all from starving, stinking or streaking. He's a natural born leader. I'm more of a free spirit. About the only thing we have in common is our children and our faith.


I've often asked myself over the past ten years how exactly did this happen? How did two people so very different make it down the isle? And, how have we avoided the courtroom? Well, if I ever have that lightening bolt revelation, I'll let you know right before I write my own marriage self help book to add to the plethora of dusty books on my book case. I will say that the older I get, the more I realize how little I really do know about life and just how much I need help.

There was a time when my husband and I had more in common than it seems we do now. One of my favorite things about him was how we could talk for hours and I could ask him a million questions (usually about science or medicine), and he would just keep talking and answering as if he never got tired. He's a natural born leader like I mentioned above, but his gift is teaching. He can break down the most complicated concepts and explain them to anyone in a way they can understand. He won awards for patient communication in med school and residency, and it hasn't really changed. His patients LOVE him, and it's not all about how knowledgeable he is as a doctor (which I will say, he's pretty darn smart). It's about how much he cares about each and every one of them, even the difficult ones. His gift for teaching and communicating drew me in like a magnet, it makes him a better doctor and a better father, too. The best teaching moments, the ones I hope I remember all the way to my last breath, are the ones he shares with our children.

He works very hard to provide for our family. He always has, even when things weren't looking so good for us. That has allowed me the ability to devote myself completely to our children, especially  to Jackson's ever changing needs. He handles the bread winning so I can handle the bread making, and I am VERY thankful for that.

His type B personality is a pretty good compliment to my type A. His relaxed "it will all work out" temperment helps balance out my "the world is going to end right NOW" mentality. We might not have a whole lot in common, but maybe that's a good thing.

I believe my husband and I are together because God put us together, not to provide happiness but friction, the kind that smooths out rough edges and rusty patches. Iron sharpening iron (Prov. 27:17). I believe God is working in us and through us to give us MORE than happily ever after here on Earth, but abundant life with Him forever.

So, after 10 years, three kids, an autism diagnosis, and a whole lot of crazy life, I don't think it's so much about finding the right one, but about becoming the right one, together. Here's to another ten years of sharpening. Maybe by then we'll have it all figured out.

That's What God Sounds Like

It was a typical start to the weekend in our house. Kids in bed. I'm trying to catch up on some computer work (i.e. Facebook, Pinterest and Blogger) when my husband hands me a letter from Georgia DHR saying, "this is going to ruin your night." It was a notice of termination regarding Jackson's Medicaid.

Let me pause here and share what exactly I'm talking about. Back when all this was new to us and we didn't know we had options, we accrued a pretty substantial amount of debt in medical and therapy expenses. The doctors, teachers, psychologists and therapists all told us Jackson needed these services to function, that without them, he wouldn't have a chance of developing properly and the developmental gap between where he was and where he should be would continue to widen. However, these services are expensive. We kept going, paying what we could when we could, but it was getting out of control. One of Jackson's therapists invited me to a parent night out where a Medicaid expert would be speaking about the Katie Becket Deeming Waiver. This is a special waiver for children with disabilities requiring extensive therapy. It is based on the diagnosis and prognosis of the child not the income of the family. Jackson's diagnosis qualified him for that program. It was a crazy set of hoops we had to jump through, but without this program, Jackson would not have received the services he needed to achieve what he has achieved over the past 4 years. He would certainly be in a very different place. If you are a Georgia family with a child on the spectrum, and you haven't heard about the program, you should check it out (and make sure you read all the way to the end). Now back to my story....

When I read the line "NOTICE OF TERMINATION" and then "YOU DID NOT GIVE US THE INFORMATION WE REQUESTED," my physical response was immediate. My heart started racing. I could feel the blood pumping through my temple. I felt hot and flushed at the same time. What?!?!? I'm telling you, if I didn't have Jesus, I'm afraid someone would have died. I immediately called the number on the form thinking I would leave a message. Good call, Rach, you're so clear headed and rational right now, you'll leave an awesome message. It's busy....Now, that's not uncommon. Back in my rational mind, the one I jumped out of for a moment, I knew DFCS doesn't have a voice mail. (Could you imagine having that job? No, thank you!) I've called them dozens of times over the past year trying to get the review paperwork we needed. See, we never got our review packet last year. Actually, we received absolutely nothing from them last year. I called over and over and got different answers from different people. No one could tell me his case worker. They would often refer me to another county's office, which would often end with the busy signal as well. I eventually got someone at the state office who told me, "we'll get to the bottom of this," and heard nothing. I've heard over and over again how overwhelmed they are at DFCS. I've heard over and over, just give them time, they'll get to you. So, we waited and waited, eventually receiving this termination notice and leading me to the brink of a total nervous system collapse....I can't get them on the phone? Fine, then I'll get them by email. Off to the website. There isn't an email account for our county's DFCS office. (Something else I knew in the back of my mind. Who would want that job either?) Awesome. Well, then I'll go above them. I emailed every commissioner, representative, office clerk I could think of. I must have sent out dozens of emails all stating our situation and how horribly my son's review was handled. I dropped names and dates for when I had talked to them and what they had said. I even mentioned my husband and his active role in our county's child advocacy programs. I sat at my computer for a long while executing vengeance on my keyboard until I rather anticlimactically went to bed. Nervous and unsettled, Monday couldn't come fast enough.

Kids fed. Everyone showered and dressed for the inevitable trip down to DFCS. I thought I would try it one more time by phone. First try, busy. Second try, rings indefinitely. Third try, busy. Fourth try, hallelujah someone picks up and says, "Barbara?" I quickly seized the opportunity before she could back track and said, "no, but I need to speak to someone regarding a termination notice." "Sure, hold on." Great, now I'm on hold. Someone gets on. I give her my information. I'm given another number to call, in another county. When I call this number, I get a very frustrated woman explaining to me that my county sent over all review cases between last July and this March to her county. Many were lost in the transfer either to them or from them, and while her name was on our case, she had nothing to do with it. And, even better than that, she couldn't help me. I would likely have to reapply, through my county's office. So, I take a deep breath, vent on Facebook and load everyone up in the car. Did I mention that it's raining. Wonderful.

Not sure what to expect, nervous and sick to my stomach, I wait in line. My boys settle into seats with their DS's while my daughter happily makes friends with everyone in line. The closer I got to the window the more impressed I was with how the woman working the window was handling everyone in line. She had a calming smile and a genuine interest in every case. She was unbelievably helpful and knowledgeable. I immediately thought about Proverbs 15:1, "a soft answer turns away wrath." Her gentle responses diffused any anger in the line, and by the time I got to the window, I was calm. Barely holding onto my tears because that's usually what happens to me after my blood boils, the water works begin. I asked her for an application and showed her the termination notice. She said to wait and someone would be with me soon. We waited. My older son and my daughter were making friends with the other children in the office. My older son was having a conversation with a girl who looked about his age about how boys play baseball and girls play softball, but she knew a boy who played softball, and he had a girl on his baseball team last year. They were smiling and talking, making the most of the situation, actually enjoying themselves. It was about this time, I checked my Facebook status. Remember I vented before leaving my house. There were comments from friends offering encouragement and prayer. I was suddenly overwhelmed with peace, and extremely embarrassed by the fact that I got so angry in the first place. And, by the fact that I had to vent my frustrations on Facebook.

During this peaceful moment of clarity, I was reminded of a question Jackson asked in church that Sunday. Jackson asks LOTS of questions, mostly pertaining to how 'real' something is. We're working on understanding the difference between fantasy and reality. He tends to lean more toward the reality side of things, and as it pertains to spirituality, I've long given up the Sunday School answers we grown ups often give kids his age. They seem to confuse him more than the grown up answers. [Case and point: asking Jesus into his heart, asking a God who is bigger than the earth, the universe and the boogie man to live in his chest would be painful and most likely result in an explosion.] He is definitely my kid. Anyway, one of the dozens of questions he asked during the service was, "is that what God sounds like?" Now, I did take notice of this question, and even thought about how precious it was, however, the full weight of it didn't hit me until that moment sitting in the DFCS office.

"Is that what God sounds like?" Yes, Baby, that is what God sounds like. He speaks to us through His Word and through His people. He speaks to us through His creation and His Spirit. He speaks through the pastor and Sunday School teachers that care for us. He shows himself in our moments of desperation through social media and the DFCS worker handling the window. He works behind the scenes in the hearts and minds of those around us to make things happen in record time, all to say He loves us and to remind us we CAN trust Him. He never drops the ball.

Jackson's caseworker came to the window. She gave me the paperwork I needed to get back to them, some had to be completed before we left making our visit with DFCS about 2 hours long. Things got tense there toward the end, DS batteries exhausted and other children to get into trouble with. However, that peace lingered.

It's funny how entitled we can become, and how offended we can get when something we feel entitled to is threatened. The Deeming Waiver allowed my son to receive therapy, paid for by the State, when we weren't able to pay, and rather than being grateful for what I had been given, I was quick to lay blame, point fingers and make accusations. How dare they terminate my child? I'll show them.

Later that afternoon I got a call from the supervisor over the Medicaid division that handles the Katie Beckett Deeming Waiver cases. One of those emails I sent out reached the right person. During my conversation with her, she apologized for the problem, confirmed it was a mix up between the two counties and she was able to reinstate my son's Medicaid benefits, immediately. They still need the review paperwork, but there would not be any lapse in care.

That's what God sounds like.

Kindergarten Graduation

Jackson and his teacher

Super big smiles. Bebopping his little head through the songs. Of course he knew all the words, he LOVES music and has an uncanny ability to memorize things quickly. He was so proud and so happy to finally be a first grader. So proud he was still talking about it when he went to bed tonight.

My autistic son just graduated from Kindergarten, and loved every minute of the ceremony and reception. So why am I so overtaken with fear and sadness? Why am I sitting here hoping that typing this out and sending it into the void of cyberspace will bring some comfort? Should it hurt like this? Maybe it's the struggles we went through this year. Maybe it's the fear of the unknown, facing another school, another schedule, another transition. Or maybe it is yet another sign that I'm not as well adjusted to his diagnosis and all these changes as I have made myself believe I am.

As I look to others further along on this journey, I see no sign that this burden gets easier to bear as our children grow. Why do I expect it to get lighter with every milestone? Why do I get disappointed when a goal met often gives way to two more we didn't see. Am I still holding on to hope that autism is curable, that I can fight this fight and win, that I can somehow put this diagnosis in the grave and leave it behind? That would explain feeling like a failure when faced with the fact that he isn't cured, that we haven't left autism behind. That would explain the desperation and anger that wells up when I look back at how much we have fought with so little to show for the struggle. It would explain the disappointment when I'm forced to accept that victory for us isn't measured in hearing something like "you are now autism free" but in slow irregular progress. Progress toward what exactly? What is the end goal? For him to be typical? Dare I say normal? Is that really what I want? To be able to stand on the other side of this and say to myself and all those around me, see I did conquer this. To feign humble acceptance of God's plan only to harbor a desire to prove I won't be defeated by this nameless faceless enemy, that I will overcome it and free my son from its grasp, that I'm strong and capable and self sufficient, the perfect mother, chosen for this trial because I am up for the challenge. Is that what I want, to prove I'm not a crumbling mess afraid of first grade? Is it all about me, and this guilt I can't shake, that somehow there is more I could do, more I could try, more I could be?

Maybe I shouldn't hit the publish button on this one. I don't have any answers tonight, only questions. God, help me. I can't seem to accept my own humanness much less the diagnosis given to my son four years ago. Four years, so long but so short. Oh to learn to accept my failures and shortcomings and rest in my Savior's success and perfect provision. Oh to have nothing to fear and nothing to prove. God, help me.

Let Me Hold Your Hand

Pulling in to the sensory gym to pick Jackson up from his OT appointment today, I saw a mom (assuming she's a mother, could have been an aunt, foster parent, caretaker) I've not seen at therapy before. She was sitting on the concrete steps in the sun with her head bent, resting in her hands. By the time I got my kids ready to go inside, she had already gone in. Upon exiting my car, I could hear her son (again assuming her son) screaming from inside the gym. Then I understood. Everything inside me wanted to go hold her hand and tell her what I desperately want to hear in my moments like that. Since she and her son's therapist were handling the situation, I didn't know if it would help or hurt. I had to get Jackson and get us home for lunch and the rest of our school day. So, I didn't. But, I thought I would share this for those of you who know what this woman was facing today, who know that feeling all too well, desperation and exhaustion mixed with a little shame, suffering through a melt down at the playground, the bounce house, the grocery store, school activity, birthday party etc.

Let me hold your hand and tell you. It's going to be ok. I know you're a good mom because if you didn't care, you wouldn't be here, and you certainly wouldn't be fighting this battle in public. The sting of the daggers thrown at you from dozens of glaring eyes will only hurt for a little while, but if you give up and give in to that voice in your head that just wants it to be over, that might set your child back and undo the painstaking hours of work you've already put into overcoming this obstacle. There is light at the end of the tunnel, and there are many, many parents who know what you're going through. If one of us sees you out in public in a situation like this, we'll be routing for you. You can make it. You will survive it. And, I want you to know, I'll be praying for you and for that precious child of yours. I can tell you from experience. You will reach a day when progress has been made, obstacles have been overturned, and the road ahead made just a little bit smoother. You will learn more about life, love and humanity caring for your amazing child than you could learn from a dozen typical children. He is yours! You are his! You've been called to walk this road together, and God will never call you to something He won't give you the strength to handle WELL. Hang in there, and when you don't think you can make it, grab a hand and hold on tight. You are not alone. Let me hold your hand and tell you. It's going to be ok.

I'll Stand

Jackson and me at his 6th birthday party

About three years ago, with more questions than answers, I found myself overwhelmed with worry and fear. Jackson's diagnosis was still so confusing. What is autism? Pervasive Developmental Disorder - Not Otherwise Specified, is this English? What is the autism spectrum? What does this mean for him? What does this mean for our family? What does the future hold? Can I handle this? Speech, occupational, social, or ABA therapy; public, private or home school? How do I know what's right for him?

One morning, in an attempt to calm my spirit while I tackled the chaos I knew I could handle, my kitchen, I turned on some music and set to work. My youngest was sleeping. My oldest was at school, and Jackson was playing with his blocks in the next room. The Stand by Hillsong United came on, and I was overcome. In one of those precious moments where the presence of God in my life was tangible, I stood, hands raised, head bowed, tears flowing, unable to sing. The words echoed in my heart.

"You stood before my failures.
Carried the Cross for my shame.
My sin weighed upon Your shoulders.
My soul now to stand.

"What could I say.
What could I do,
But offer this heart, O God, completely to you."

  Then I heard this tiny voice beside me, hands raised, head bowed, singing what I couldn't.

"I'll stand with arms high and heart abandoned
In awe of the One who gave it all.
I'll stand my soul, Lord, to you surrendered.
All I am is Yours."

I immediately crumpled to the floor. I don't think I've ever hugged him tighter. He patted my back and went back to playing, but in that moment, He and God gave me something I couldn't live without, a vision. One I have seen and heard in every set back we've faced. "All I am is Yours."

We found out this week that Jackson cannot continue at the private/home school program he's been attending this year. They say he isn't engaging and participating like he should, and they don't think he will be able to handle first grade at their school. I've been surprised at the level of pain this decision has brought me. I burst into tears at Target. (Yes. I know. Poor stocking person didn't know what to do.) I've lost sleep and struggled to function properly with this constant ache in my gut. Why? There was a point when I surrendered all my dreams for Jackson to the vision God gave me that day. "All I am is Yours." He belongs to God, and his diagnosis is a special calling on his life, a purpose that only he can fill, a work of God. I think this set back has brought more pain than it should because, little by little, I had begun to take back those dreams. He's been doing so well for so long, I started thinking the worst was behind us, that everything was going to go according to plan after all. Once again, I'm overwhelmed with questions. Some new, some old, all without answers. And, once again, God has brought to mind that vision.

This morning, I had my iPhone on shuffle while I attempted to tackle the events of the day, The Stand came on again. The image of Jackson's little hands raised and head bowed, the sound of his tiny voice singing the words in 3 year old delayed speech, this vision reminded me who he belongs to and in whose hands his future lies. One more emotional outburst, then peace.

I don't know if I can handle what lies ahead, but I know God can. One more time, I'll surrender my heart to Him and let Him lead the way. "All I am is Yours." So, I'll stand.

Finding the Right Buzz

Or, I guess I should say the right buzz kill. Caffeine is known to have a calming affect on those who suffer with ADD or ADHD. It's a stimulant and acts much like ADD medication does in helping with focus and attention. Most pediatricians, though, will still caution that caffeine is not good for children. With that being said, we (my pediatrician husband and I) decided to try it with our autistic son.

It's not easy to find a caffeine delivery system for a child allergic to corn with certain food texture/temperature aversions.

So, my first thought, being from the South, was to give him a glass of sweet tea in the morning before school. Sounds easy enough, right? Wrong. He hated it.

Soda, even the natural kind, isn't an option because he can't stand the fizziness. Warm liquids are equally as hard to tolerate. I tried yerba mate (something I like to drink) and earl gray tea over ice. Same reaction as the sweet tea, even when I sweetened it to the pucker point. Still, we were noticing a difference in his behavior when I was able to get him to drink some of it, usually accomplished with bribing. So, I scoured the health food isle at our local special-diet-friendly grocery store to find Energy Bites, a berry yerba mate drink, and a natural energy shot.

First the yerba mate drink, Guayaki Yerba Mate Very Berry 16 oz. with 150mg of caffeine per can. WOW! A can of Coke has 33mg, and a can of Mountain Dew has 50mg of caffeine. I thought, "Hey, this might work. I can just give him half a cup, ask him to take it like medicine, and he'll get more than enough to get the job done." However, this stuff doesn't keep well after opening, and the more I tried this, the more he reacted with whiney icky faces. I liked it enough, though, to keep buying it for those mornings when I need more focus and attention, or a swift kick in the heinie.

Next we tried the Energy Bites. "Mom, they taste good, I just can't chew them." Given the initial look on his face at first bite, it took me a little while to get brave enough to try them. They do taste ok, but wow, they took some serious chewing. Think stale gummy worms, the cheap kind from the 80's. I think these will end up work out food for mommy.

Next the the tiny little bottle of Steaz Energy Shot. 150mg of caffeine in a 2.5 oz bottle. I knew better than to ask him to drink it straight at this point, and he does NOT need that much caffeine. This time I decided to just add it to something he liked. In this case, a milkshake.

2-3 good scoops of Breyers All Natural Vanilla ice cream

2-3 good scoops of Stonyfield Organic Vanilla yogurt

2-3 tsp of Lyle's Golden Syrup (to sweeten it, you could probably use honey, too)

enough milk to make it smooth, and

.5 oz or 1 tsp Steaz Energy Shot (I figure about 30mg of caffeine)

Well, this time, he drank it all down to the last drop and asked me AFTER it was all gone why he got to have a milk shake with breakfast. I said it was a special milk shake with medicine in it, and we were going to try it for a few days. His eyes lit up like I had just told him Christmas might come next week. "A milkshake for breakfast? Cool." Now, I would add fruit and make it a smoothie, but Jackson can tell if there's one strawberry/raspberry/ANYberry seed in a whole cup of juice. He likes orange juice though, so maybe I'll try my hand at making an orange julius copy recipe.

He focused well for me during school, and seemed more calm so far this morning. Maybe we've found the answer. Making a milkshake for breakfast will make more sense to me when the weather warms up. Right now, just watching him drink it made me cold. I'm currently dressed in mommy sweats with the fire going. General Lee (Georgia's groundhog) predicted an early Spring though. So, Spring, the sooner you get here, the sooner I can start complaining about how hot it is and how much I miss the cold.

Lay It Down

I'm not exactly sure how to put this into words. All I know right now is that I need to. It's eating away at my soul and threatening to unravel my sanity, at least what little I have left.

When Jackson was diagnosed with PDD (on the autism spectrum), I remember feeling like I was in over my head. First food allergies, and now this. I hit hyper advocate mode. I had to do everything in my power to get him all he needed to succeed in life. I spent hours researching and learning about his diagnosis, and countless more hours experimenting with what I learned. We got him into Babies Can't Wait (a Georgia program for special needs children under 3), got him into therapy and started wading through insurance denials and loop holes. At 3, we put him in a self contained autism class in a public school (oh, the trepidation I felt watching my 3 year old son who could barely talk being walked into a gigantic elementary school by a total stranger) plus two school therapy sessions a week. We struggled through the daunting process of applying for the Katie Becket Deeming Waiver for Medicaid (a life saver, otherwise, we wouldn't have been able to afford therapy). For a while, he was getting two private therapy sessions and two school therapy sessions a week. We finally figured out his diet and got his stomach issues under control. He began to develop at an exponential rate. Milestones were finally being reached. We were working closely with a developmental pediatrician, a psychologist, and multiple therapists and teachers. It was so amazing to see. Part of me wanted to believe we were 'curing' his autism one therapy session and doctor visit at a time. I started thinking he was going to be just fine. I started feeling guilty complaining about his diagnosis. I started feeling like I had nothing more to offer other parents we met at the beginning of our journey. I started feeling guilty as we saw Jackson pulling away from the other special needs students in his class. I quit talking about our life and ongoing struggles with his diagnosis. I let those relationships that sustained me at the beginning of this journey fade into the background.

We mainstreamed Jackson for preschool, and he was doing so well that we decided to put him into a special homeschool satellite program with his older typically developing brother. We were assured by his therapists and preschool teachers that he would be fine. The public school teachers and therapists would have mainstreamed him if we sent him there. So, we thought it was a good idea. At the very least this would ease him into the full time school thing since he would be going to class twice a week and at home with me the other days. We thought this was the best option for him. Now after struggling through the first few months of the school year, I'm beginning to think we were wrong.

Once again, I feel like I'm in over my head. We've had problems with his behavior in school from day one. He's struggling with things we thought we had conquered long ago. His differences are obvious in a peer setting. He struggles to make friends and be appropriately friendly. He struggles in class. There are so many details that go into the dynamic of the classroom, the teacher, the structure, the way the classroom is run, the way Jackson feels about school. It could be any one thing or all of those details compounding on each other. I know this particular classroom isn't working for him, but I'm so completely lost about what to do. The options aren't the same now. He didn't speak like a 3 year old should speak; so, speech therapy was the answer. He had low motor skills and body awareness; so, occupational therapy was the answer. He had violent reactions to some foods; so, an elimination diet was the answer. Now, he can't focus, doesn't properly interact with peers, refuses to obey his teacher, refuses to do his work in class. We've tried creative discipline, rewards, medication, diet, sensory stimulation/calming techniques, meetings with the school. We can't seem to get a handle on it. We've been wading through all the education options for our county, and it's almost as difficult as all the insurance and medicaid struggles we had early on in our journey. All homeschool isn't the answer because he NEEDS peer interaction to grow socially. All private isn't the answer because there's no way we could afford it on top of everything else. All public is scary given the class size and the few options he has left in the school system (due to his high rate of function). It's like we're stuck in the middle, in no-man's land.

At this point, the weight of this burden has all but silenced me. Even in prayer, all I seem to be able to get out of my mouth is, HELP! Those of you who know me well, know that asking a human for help is nearly impossible for me, and accepting help offered is almost as impossible. I kind of feel like a spoiled child. I don't want to reach out for help, I want God to miraculously intervene and make every problem go away. I'm not sure exactly where I got the idea that this is how things work, or the idea that I need to maintain some kind of Rockwell white picket fence image at all costs. I want it all to be perfect, and when it isn't, I want it to at least look perfect.

I can share spiritual burdens and struggles fairly easily, but the burden of a mother, that one I tend to prefer carrying all by myself. The thought of sharing it or letting it go is completely terrifying to me. I can't see how anyone else could serve this child and this purpose with the same kind of reckless abandon that I will. He's MY baby, and that makes his struggles my struggles. That makes his problems my problems. That makes his life and all that goes into it my responsibility. That means I have to carry it all because sharing even a little part means letting go of too much.

"Cast all your care upon him; for he cares for you." - 1 Peter 5:7

So, if I were talking to myself as a friend, being completely honest and candid, I would probably share something like the above verse and tell my overburdened self to share it with God, because Jackson is ultimately HIS baby. Jackson's struggles are His struggles. Jackson's problems are His problems. Jackson's life and all that goes into it is His responsibility. That I belong to Him in the same way, and He will serve me and this child with more reckless abandon than I could ever imagine. He already has.

So, in an attempt to listen to the part of my brain that is still working, I want to share part of this burden. I'm going to type out the prayer on my heart right now, and hope that if you're reading this post and feeling the weight of a similar burden, that you can pray along with me.

"So, Man of Sorrow, acquainted with grief, I need Your help and the prayers of Your people.

I, once again, need reminding that I'm not alone. That some transparency could be applied in this area of my life to my gain and to the benefit of others around me struggling with carrying a burden too big for them.

I need to remember that no one has the perfect family. The image I remember idolizing on the cover of the Saturday Evening Post is a painting, and frankly, no one could possibly carry the turkey on that cover much less the burden of maintaining that image.

I have problems. My children have problems. That doesn't make me a bad mother, it just makes me human.

I can't walk this path alone. I need You and those you have placed beside me. I need them, and they need me. Our burdens may be different, but they were all meant to be shared.

I need to remember that You are ultimately the only one capable of carrying my burdens. That laying them down at Your feet is the only hope I have of ever standing straight and tall as Your child.

I need you. Jackson needs you. Please give us the answers we need, and lead us through this maze of life to the destination You have prepared for us.

Help me to rest in your love and provision and allow you to carry me and my burdens.

I ask all this in the name of my Savior, Jesus Christ..... Amen."

Seeing Autism

There are plenty of days when I don't even notice Jackson's differences. His autism seems to just disappear into the chaos that is our lives. We go about our weekly routine of school and therapy plus sports and church often without a hitch. We have grown so accustomed to it that life is 'normal' even with the occasional hiccup, and we're happy. Inevitably, though, the routine gets changed. A birthday party here, a family get together there, and suddenly there it is, autism in all it's glory.

Sometimes it's manageable, sometimes it's not. Sometimes no one notices, other times it is quite obvious to everyone present. Many times seeing autism in my child brings up the pain and struggle I felt the day I heard the doctor give his diagnosis. But, in the pain of many of these moments I've been taken back by the reaction of family and friends. I have been nearly brought to tears over and over again at their support, acceptance and even their attempts to understand and help.

I am so blessed to be able to say that in our family and circle of friends, when I see autism, I also see love, hope and understanding.

Oh, that it were that way for every child with this diagnosis.

Not My Baby

When the diagnosis came out of the doctor’s mouth, I felt like he had kicked me in the stomach. All of the dreams and hopes I had for my son, Jackson, seemed to die when I heard, Pervasive Developmental Disorder. The doctor went on to describe the autism spectrum and where Jackson fit on that spectrum. On the outside I sat quietly and attentively listening to what he had to say, but on the inside I was screaming, “No! Not my baby!”

Nothing had really changed in that moment. Jackson was still Jackson, but it took me a while to remember that.

I went through weeks feeling like it had to be a bad dream. It just couldn’t be real. Every time I looked at him I cried. I remember thinking the doctor had to be wrong. There had to be something I could do. There had to be a cure. I remember searching for answers like I did with his food allergies. Only, the more I searched the more confused and distressed I became. What do we do now? What does this really mean?

Unable to really answer these questions, I found myself focusing finally on what this diagnosis didn’t mean. As hard as it was to face, there were no cancer cells eating away at his little body. I would not have to watch helplessly while some disease slowly took him away from me. There were certainly scarier things to face than autism. I was finally able to accept what I heard in the doctor’s office that day, and with acceptance came hope.

I began to see his diagnosis as a blessing, an opportunity to learn and grow. Through this precious little boy, I’m learning what it really means to love someone selflessly, what it is to persevere through difficulty, and that life truly is a gift. He is my angel, my tiny window into the heart God.

I know my God doesn’t make mistakes. I believe now more than ever the things we see as imperfections here on earth will look very different when we finally see our lives from heaven’s perspective.

My son has autism, and I’m so glad he’s mine!