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Category Archives: Autism and Faith

Can I get a side of grace with that Autism, please?

It was an especially hard Sunday. In my desperation I spent all day trying to find the words to express what I had on my mind. What I wanted to say. The loss, disappointment, guilt, and even anger I felt.

Nothing I found measured up. Nothing spoke to my unique situation.

See, I am a former children’s pastor. In addition, I am a counselor for kids with special needs and mental health diagnosis. I’m expected to have all the answers. To guide kids in making the right choices. To be strong. But with all these things, I am also a weary and imperfect parent. I have a son with special needs. And because of this, I end up feeling utterly alone.

Because for all the work done to make more people aware of how a kid like Hunter can present in social situations, there is still a long way to go. The fact remains that many still expect him (and many children like him) to look and act only one way. They then dismiss his overwhelming needs, and our struggles if he doesn’t.

Tell us all the things we or he need. Can I tell you for a minute what we need?

He will not forget the work you did or the love you showed for him in the help you gave and are still giving to other Christians. Hebrews 6:10

Please. If you don’t know what to do. Just say it. Ask us how you can help. Don’t simply stand by and remain silent. It only compounds our loneliness. Makes us continue to believe that no one gets it.

And once you have learned how to help us help him, teach your kids how to do the same. There is nothing more inspirational and rewarding to a kid with special needs than to have his or her peers get it, to come alongside them so they don’t feel so alone in their turmoil. I don’t expect your child to understand what autism is, or to totally be in tune with his feelings. What I do expect is for them to offer a hand. A pat on the back. A gentle word. Anything but more uncomfortable stares.

We need you to realize that while all those heartwarming stories of successes and milestones. Those happy You Tube worthy, going viral moments are wonderful; they were also made possible by many heart-wrenching ones. We need you to listen to these as much as you celebrate the successes. However, when we get the courage to share those heart-wrenching moments, we usually hear your silence.

What we really need. What we really want. Desire in the midst of the chaos. Crave beyond the stares, and covet in our quick snappiness or inability to cope is simply this: grace.

I don’t need your judgment. I don’t need you to make a comment about how I need to smile more. Or let someone know how I forgot to greet you this morning when I came into church. Did you know I listened to a 10 year old scream all morning getting dressed because he didn’t want to come? Then his underwear was too tight. His shirt was too something, and he then screamed all the way to church.

Yes. I knew I could get 5 minutes of peace in my office before the service started, so I ran there.

And, yes. I know I sit alone in the first service. Because my son is not with me. He won’t take all of my attention. I can listen to the Word unobstructed. Until the next service starts, and he is moaning about the length. The noise. A back rub. His sister. And I can’t hear anything the preacher is saying. I just need my moment now. Please.

And please understand, that…yes. He looks fine right now. In front of you. Talking to you. He is not so socially unaware that he does not understand what it is like to be embarrassed. He actually fears embarrassment like he fears the dentist. Immensely. So, he has the ability to hold all his emotions in until he gets alone with mommy or daddy and explodes. Because we are safe. We can handle it. Or so he thinks. And even if we can’t, he knows we won’t judge him. We won’t leave him. We will always love him. He just isn’t that safe around everyone else. So when he leaves this church screaming with me, it’s not because I’m an inept parent. I am a safe one.

Carry each other’s burdens, and in this way you will fulfill the law of Christ. Galatians 6:2

Who recognizes as well those who have overlooked the ten-year old screaming the words “fart” or “butt” in the middle of the church service. Who simply help him mask his discomfort with his overloaded senses. Because that is what it is. And for whatever reason these totally inappropriate words at the time provide some kind of comfort. Thank you. Thank you for making it seem completely normal. And thank you for reminding him it is completely not OK to say them during the church potluck.

Thank you for being a safe enough person to him that he is completely comfortable enough with you. That he will gladly let you pick him up, even though he is 10. So he can be distracted long enough for Mommy to have a ten minute conversation after church. Because you know he was ready to leave at 12. Because church was supposed to be over at 12, and we are still here at 12:05. Thank you.

Thank you for continuing to invite us to lunch. Even though we decline every single time. Because our kid will more than likely only want a hamburger. Only from McDonald’s. And, you know. It’s 12. Church is over. And, well we must go home. But thank you for continuing to invite us. Thank you.

And most of all thank you to the those who can recognize this mom’s face. The one without the smile. The one who ran to her office as soon as she got to church. For just five minutes. Who may look harried. Who may have forgotten to say good morning. All to ensure a kid felt safe on the way to church. Thanks for stopping and asking this safe momma, “Rough morning, huh?’ Thank you.

And this safe mom is teaching this boy that grace handles getting screamed at with stoicism, “It’s OK, sweet child’s,” head massagers, and back rubs.

Accepts his apologies over and over and over; even if he will be doing it all over again next Sunday. Or when he is hungry again. Or mad because the WiFi is out. Or lonely because his sister has a play date and he feels left out. He knows this house offers grace. Safety. Security. Acceptance of his differences.

And I pray this safe mom is teaching others how to do the same.

Because you may have messed up. You may not know how to handle it. You may have thought he was just a bratty kid, and we were inept parents. Tried to help, and failed. It’s OK. We tried and failed, too. We do often. Still. But we have something to offer: Grace.

Because it’s what we all need. Autism or not. Just a side of a little bit more grace.

From his fullness we have all received, grace upon grace. John 1:16

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Posted by on January 14, 2019 in Autism and Faith

 

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So that no one walks alone

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“I’m bored.”

“She’s an idiot. Why does she want to go to the pool so much.”

“You are the worst brother ever. You don’t ever want to do anything”

“You are stupid. I am sick of sitting by this stupid, stupid pool, stupid head.”

When they are not fighting over who gets the hour of free time. They fight over whose turn it is to go first.

When I am not rock-paper-scissoring these fights, I am dragging one kicking and screaming out of said pool after he has smacked me in front of everyone for asking him to sit down, and not ask me one more time when it is time to leave the “dummy” pool with “dummy Hayley.”

When I am not battling fights at the pool, I am battling them at the cabin, in a tiny room over whether they will play Monopoly or Clue, or even play a game at all. Whether Hunter is “boring,” or Hayley is once again “dumb” for even liking board games.

We were only away two days, and if the kids were not entertained every second they did not know what to do. They fought like 2 rabid pit bulls. Mommy could not please both, because neither of them seem to like the same things, and if they do it’s definitely not at the same time. The schedule Mommy tried to impose to ensure both got ample time at each activity of their choice is not working. Mom is frantic, has lost her cool, and then some, and needs something to sustain her.

Coffee can only go so far. And, after I head back into the pool. After the curly-headed monster has screamed a couple “nos” at me, and slapped at me again. As he stands there kicking at the fence and grunting, I realize that as I sit back down, I may be surrounded by a ton of people, but I am utterly and helplessly alone.

I don’t have anyone here to help carry this load when I can’t split myself in two.

No one is reassuring me that my parenting decision was not one that will scar him for life.

That my daughter won’t resent all the time her younger brother takes from her.

Instead, this frantic mom wanted to find a corner, and kick at the fence herself. Or, at least find a small hole to crawl into. I was embarrassed, frustrated, feeling under appreciated, and then it happened. The tears I was trying so hard to fight, finally just fell.

Share each other’s burdens, and in this way obey the law of Christ. Galatians 6:2

Until, one mom saw the tears falling as I sat on the side of that pool. As I sat trying to hide them neatly underneath the big hat I wore.

“What are your kids names? Are they coming back in a few weeks for camp?”

I explained that yes, the oldest one surely, but that curly-headed monster…more than likely-no. He had autism, and with it some issues that he just couldn’t get over that kept him from enjoying it.

“Oh, my oldest has Aspergers. I totally understand. It’s hard.”

There it was. Relief.

Someone who had seen my mommy moment. My “I want to melt right here and disappear” moment, and reached out.

And, even if this Mom didn’t understand what I was going through in that moment, she tried.

I know God is with me. I know in those moments when I feel alone, I can call on Him, and He will be there.  However, he has wired us for human connection.  And, there are times I desperately need that. And, I am pretty sure you do, too.

And with this connection comes His desire for us to share each other’s burdens. To walk with a mom who is having a hard time. So she isn’t sitting at the pool feeling so alone.

It will take us out of our comfort zones. This I know is true, but it will also breath life into some desperate soul wanting to give up. Hope into a weary parent who sees only their failings.

“I tell you the truth, when you refused to help the least of these my brothers and sisters, you were refusing to help me.” Matthew 25:43

In a world that appears to be hurting and hiding it well, reaching outside your comfort zone, provides light to someone who may feel all alone in their struggles. May give someone the ability to reach out next time they feel like giving up. Screaming. Or running for the hills. Most importantly, it shows them the love of our Savior.

We are called to be that light to others as a community of believers, but the question is- are we? Are we like that Mom at the pool, willing to see the tears that fall, and get a little messy with them? Or do we steer clear, not wanting to have anything to do with that? When we ask someone how they are doing, do we really stop and wait for their answer? Or, are we offering fly-by conversation out of obligation, an “I’m asking how you are because I have to’s” with no desire to really know? Jesus certainly never stopped to wonder if someone was worthy of his time when he saw others hurting, or marched on intent on getting to his next stop. Neither should we.

Let’s be a little more messy. Jump in, walk with someone a while, and leave people a little less alone. You could be just the friend someone needs that particular moment or day. You could be the hope that Mom needs to just keep going. The reason someone’s tears suddenly disappear. The reason someone doesn’t melt into a puddle at the pool. It may take some time. It may be uncomfortable, but it will ensure that no one ever walks through their mess alone.

 
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Posted by on June 29, 2018 in Autism and Faith, Loving Others

 

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battling little boy giants

So David triumphed over the Philistine with only a sling and a stone, for he had no sword.  1 Samuel 17:50

Battle Rock

David and Goliath. One of my favorite Bible stories. Every time I read, tell, or hear this story I get excited. I am reminded of so many of God’s truths. It is a reminder to children that no matter how small or young they are they can do great things for God. It is a reminder to us that God can take down our biggest giants if we have faith. It serves as a reminder to me of each giant he has taken down for me time and time again in my own life.

During my quiet time a passage of the story of David’s battle with Goliath was part of my daily reading of God’s word. As I read the words David spoke to Goliath as he prepared for battle, I began to feel the excitement all over again. The hope and promise that even kids can do great things! Those past giants that were conquered! All those future giants that will be!

And, then I began to think of my little boy’s giant. That giant called school. The one that had him not wanting to grab his own basket at back to school night. Sort his supplies. Look his teacher in the eye. The one who screamed when a simple question was asked about a kid in his class. Who cried and pulled his hair when his locker wouldn’t open. Who dreads the first day of school weeks before the actual day.

His Goliath was real, and the poor little guy’s plan of attack was grunts, kicks, and screams that were now becoming this family’s giant.

And everyone assembled here will know that the Lord rescues his people, but not with sword and spear. This is the Lord’s battle, and he will give you to us! 1 Samuel 17:47

God had now told me exactly what to do.

My favorite story was now our new plan of attack to tackle our back to school Goliath.

So, as I put the little guy to bed I read him the story. It’s a story he had heard before. As he so quickly told me. He’s a PK (pastor’s kid). He’s heard them ALL before. He is also usually the one up front telling his momma exactly how to relay the story. While his momma threatens to send him out.

“But Hunter, I am reading only part of it. The part where David kills Goliath.”

“Oh! That’s my favorite part! The best part!”

Well, at least we agree! And, so for a time…he is at ease. And, while he does slightly critique me as I read (tell me I am doing it wrong, ask me why my version is different, refer to the exact age of David when I refer to him as a “boy.”), he is completely open to the message. Which is all I really asked for.

And, as I finished the story and prayed to God to give me the right words to say to my son who does not understand metaphors (black and white thinking, here folks), he asked me,  “What does this have to do with school? Is it like my giant or something?”

Oh! Thank you, God!

“Well, is it, Hunter?”

“Well, yes! It stresses me out!”

So, in his hand, I placed a stone. On the stone were written the words: “The Battle is the Lord’s.” I explained that David defeated Goliath with one stone, and Hunter could defeat his anxiety with one stone. He would take it in his backpack to school as a reminder that if he felt anxious, he could bow his head and repeat those words to himself: “The Battle is the Lord’s.”

I had no idea what would happen when I placed that stone in his tiny hands. I figured what I would get would be a perplexed look, and a grunt. Instead, that little boy took out his Bible, searched for the scripture reference I had written under those words, and underlined those same words in it. He then bowed his head and repeated them: “The Battle is the Lord’s.”

God had given me the message and the words to say, and He had given that little boy an open heart to receive it.

We all face a number of Goliath’s. A number of challenges. Some are big. Some are small. Some are visible. And some are hidden.

But we are never sent out for battle alone. God is fighting with us and for us each step of the way.

“The Battle is the Lord’s” 1 Samuel 17:47

 
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Posted by on August 9, 2017 in Autism and Faith, How Is Your Faith

 

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Courage when things go bump in the night

Courage

“Don’t be afraid,” he said, “take courage, I am here.” Matthew 14:27

Recently, we moved out of the house we had lived in for nine years. For those years we were comforted and secure inside its walls. We had time to get used to every noise. The environment around us. Every creek. Every dark corner. Every creepy cranny.

Then we made the decision to move. Not an easy one. We had our little monster to consider. The one that doesn’t handle change very well. While we were blessed with a house that was on the same bus route, we worried about this new transition. What would these new surroundings do to our boy’s overwhelming anxiety? Our finely established and well-tuned routine?

For a couple weeks, it seemed we had made it through unscathed. Excitement of having rooms of their own assuaged any doubts. New routines were put in place. All was well.

New home. New noises. New environment around us. New creaks. New dark corners. New creepy crannies. New curly-headed boy fears.

“Mommy, It’s cweepy in here.”

This. The second night in a row. During an already exhausting week? Really? I just want to sleep. And, at first I tried to. Sleep alone that is. I had that “discussion” about needing to be a “big boy.” Needing to handle this one alone. So, I went to bed. Certain that once I put my foot down, he would heed this and try to be a little brave.

Until, I heard it. Soft whimpers. From his room. Whimpers of loneliness. Whimpers of fear.

“Honey, remember what we learned tonight. Jesus gives us courage.”

Yet, the room was still too “cweepy.” And, as I heard the soft footsteps. Saw the tiny shadow along the wall, walking along to Mommy’s room. Heard that tiny voice at the end of my bed once again reveal he was scared. I knew I had to be “it.” I had to be his courage.

Do not neglect to do good, and share what you have, for such sacrifices are pleasing to God. Hebrews 13:16

He has been my courage. He, Jesus, has sat with me and comforted me in dark corners and creepy crannies. So, I sacrificed some sleep, and I shared it. I shared some of mine. My courage. To ask Him for help. To let Him lull us both to sleep.

And, as he pressed his warm little back against mine, I knew that for him to have a little peace tonight, I had to give him a little of mine.

For him. For his protection. Because, right now…Mommy is his courage. Until he has the grown the wings to look for and rest on those promises on his own.

 
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Posted by on June 14, 2016 in Autism and Faith

 

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Don’t Dismiss Our Struggles

Don't Dismiss

This post will be a little different then those prior to it. While I have spoken on several occasions how autism has affected our family, and written about our many struggles and triumphs, I have not always shared how the misunderstandings of others can often make us feel.

We have had many a success. Many a trial. Learned many a lesson. The overall incidences of autism are increasing, yet understanding and support is often still lacking. And, after 4 and a half years of jumping the hurdles of autism, it still surprises me that our struggles are often dismissed.

You probably don’t even realize you are doing it. I am sure you say these things in order to try to make us feel better. To bring a bit of “normal” into what often isn’t.

But, honestly….you unknowingly dismiss our struggles.

You dismiss them every time you say, “He doesn’t look like he has autism.” Well, that is good…..I guess. Maybe it is because autism doesn’t have a specific “look.” I don’t “look” like I struggle with arthritis, but I do. My daughter doesn’t “look” like she struggles with acid reflux, but she does. You don’t “look” like you have health concerns, but I bet you do. Just as I can’t look at you, or your children and see their struggles. Their feelings. Their hearts. You can’t look at a child and assume he doesn’t have autism. And, just as your child is different from your neighbor’s. Has different abilities. Different interests. Different habits. Every child with autism does, too. There is no “look.” There is no one way a child with autism should be. Because, he isn’t supposed to look like a kid with autism. He is supposed to look like the 6 year old little boy he is.

You dismiss our struggles when you say, “He doesn’t seem to have a problem with me. He always does so well with me.” I am glad he does, because this means we have taught him to respect his teachers and other adults. But when you say this, well…it dismisses our ability as parents. You also fail to recognize that the ability for him to hold it together in your space, in your classroom is the result of many therapy hours. Many trials and errors. Many attempts to control his environment at home. At church. At school. You dismiss the careful plans made to structure every activity, just so he will “always be good” for you.

You dismiss our struggles when you say, “It’s OK. Every kid/my kid does that, too.” Ok, so then you know what that ringing of the hands means right now, right? You know that in a few minutes he will be hitting himself in the face because that anxious ringing of the hands was not prevented, right? You know that he is now laying on the floor, kicking and screaming because the menu said hot dogs, and their must be hot dogs, right? You know what he means when he screams, right? You can tell me if they mean he is hungry. Mad. Sad. Thirsty. Lonely. And, you know they all sound the same, right? Good, because I can’t figure them out. But, I’ll overlook the fact that in your effort to normalize his behavior, you dismissed the fact that it is heartbreaking for us. It’s hard. It’s exhausting. It makes us feel like failures. So, no….he is not like your kid, too.

You dismiss us when you remind us how it “could be so much worse.” Yes, we know. We realize many can’t have kids. Some have lost kids. Some kids are sick. Some struggle a lot more than ours does. But, when you say this you dismiss our compassion. Our ability to be empathetic. Our faith and trust in God. We know we are blessed.

We also know that compassion, empathy, and worse situations aside, our struggles are still real. The tears that pour in the bathroom during a long screaming fit. They are real. The frustration when the words don’t come, and we are left again spending half the afternoon figuring out a number of grunts and groans. That is real. The exhaustion we feel after planning every detail of every event, of every day, and the meltdown occurs anyway. It is real. And, yes….it could be worse. But, this….this is still hard.

We appreciate it. We do. We know you don’t know what to say. That you are only trying to help in whatever way you feel you can. But, please….if you love us. Don’t say these things. Because you dismiss our struggles.

And, in doing so, you dismiss that little boy’s, too.

 
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Posted by on June 29, 2015 in Autism and Faith

 

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The Moments in Between

Moments in Between

Routines. Structure. Plans. We all need them. We all make them. And, well…sometimes we don’t stick to them. Most of us can handle a bit of spontaneity. And, well…others can’t.

Routines. Structure. Plans. We are a family that must make plans. We must have a routine. A finely structured plan to get through the day. Navigate a new situation. Make sense of the world. Our little guy craves it. He needs it. He comes completely unglued without it.

The priceless smile above? Those come in the moments in between the meltdowns. The crawling and kicking on the floor. The tantrums that wreak havoc on a mother’s weary soul. The chaos born of a day with no routine. No structure. Wrecked plans.

And, I’ll be honest. On those days I just want to walk away. When I can’t take another day of the screams and the slaps. The grunts. The deciphering of verbal cues and codes I don’t understand. When I don’t want to figure out what triggered this meltdown. When I don’t want to fathom how this same kid can solve his sister’s math problems, and use the word “complicated” in a complete and perfect sentence, but can’t tell me he is “hungry,” “tired,” or just downright “angry!”

Those moments, I honestly want to lose the smile I keep plastered on my face. The smile that lets the world think these behaviors, these meltdowns don’t get the best of me. They don’t break me. They don’t make me want to completely unravel.

But, they do…

Until God reminds me of the moments in between. Of those small moments given of which we can rejoice. Like the little legs that had such a hard time walking. The ones that are now pedaling a bike. Of the small voice that often comes out in grunts, but now utters with such pride….”Mommy, Mommy! Look at me go!”

Yes, Mommy. Look at him goCan you cherish this moment in between all those others?

Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland. Isaiah 43:19

There are many wastelands on this journey through the wilderness known as autism. Many times when the strategies we have to calm our little boy. The carefully structured routines. The plans we make to keep him focused, soothed, and ward off frustration just come unraveled. And, there are times we want to come unraveled, too. When it all just gets to be too much. When the smiles fade, and we just want to throw up our hands and give up.

Yet, God gives us small pathways and rivers in this wilderness. In our wasteland.

He gives us the moments in between.

The moments of belly laughter.

The moments of sweet hugs.

The moments of endless banter on sharks and plants.

The moments of smiles that light up a room.

The moments when the smiles are a little easier to plaster on our own faces.

The moments of joy when we see that little boy go.

Can you cherish those moment in between? 

When it gets too hard to parent this child I have been given. When I just can’t find the strength to handle his meltdowns. When I want to unravel right before his eyes, I must remember those moments that make all of these not so wonderful ones worth all the therapy. All the schedules. All the finely mastered routines worth it. Remember the same God who gave this child to me, is the same God who mastered this little boys smile. His intelligence. His warm cuddles.

The same God who gives us those precious moments in between.

 
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Posted by on March 31, 2015 in Autism and Faith

 

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His Everlasting Arms

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The eternal God is your refuge, and His everlasting arms are around you. Deuteronomy 33:27

It’s 10 in the morning. The kids are home again. The snow has pushed them outside of their routine, inside the house, and after only two hours they are bored. Cranky. Hungry. Frustrated. And everything in between.

And in desperate need of a break.

But, only one of these kids can actually express that. Can tell me he or she is bored. Cranky. Hungry. Frustrated. And everything in between.

Instead, this one simply grunts, kicks, screams, punches, and lays in a heap on the floor.

And both of us are in desperate need of a break. Some time apart before both of us explode.

“Hun, you have to use your words. If you are hungry, or need help you have to let me know so I can help you.”

Then this boy who needed a break from his boredom, his crankiness, his hunger, his frustrations, and everything in between…reaches out and gives me what we both needed-a hug!

One of those hugs that warms your very soul. The clinging-of-the-neck-I’m-not-letting-go-of-you kind of hug. The kind that says “I’ll always help you. Always have your back. Always love you. Always accept you.”

So he himself stepped in to save them with his strong arm. Isaiah 59:16

While I sat on the bedroom floor with my smallest child, holding on for dear life, I was reminded of this-God wants us to hold Him this dear as well.

When we wake up with a case of the crankies, He wants us to reach out to Him and hold Him tight.

When we need help, and can’t find the words, He wants us to call on Him.

When we are agitated, frustrated, and everything in between. When we want to lay on the floor and kick and scream. When all we really need is a hug. He wants to be the one we reach for. He wants us to hold tight to His promise that these trials, and these feelings will not last forever.

Hold on. Cling to Him. So we can be reminded in those everything in between moments that He will always help you. Always have your back. Always love you. Always accept you. Always keep you safe in His everlasting arms.

 
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Posted by on March 2, 2015 in Autism and Faith, Craving More of God

 

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