Autism · Parenting · Sensory Processing Disorder

Neurological Evaluations and Diagnosis: What I Wish Someone Had Told Me

I hung up the phone and started to cry. I was alone in my room so that I could speak to the doctor’s office privately. I could hear my son starting to meltdown and my husband trying to help him in the next room. But I couldn’t move. I could not open that bedroom door and… Continue reading Neurological Evaluations and Diagnosis: What I Wish Someone Had Told Me

Autism · Grief · Parenting

Grieving My Child’s Diagnosis

When I was in high school, I learned about Elisabeth Kubler-Ross’s Five Stages of Grief (the stages we go through when we are processing a significant loss or change). It was part of an assignment for a speech I was working on in debate class. Denial, Anger, Bargaining, Depression, and Acceptance I still have them… Continue reading Grieving My Child’s Diagnosis

Dyslexia · Parenting · Sensory Processing Disorder

Lies I Believe About Being A “Special Needs Mom”

I leaned over the kitchen counter, my head in my hands, and tried to take a few deep breaths. The house was a disaster, I hadn’t finished reading lessons my youngest in three days, I was still in my pj’s at 11AM, and my eleven year old was melting down over not being able to buy… Continue reading Lies I Believe About Being A “Special Needs Mom”

Autism · Dyslexia · Parenting

Just Because It’s Difficult, Doesn’t Mean You are Doing it Wrong

He threw the book and stomped off to his room. “Don’t you understand?” he yelled, clearly frustrated. “I have dys-A-lexia!” As he slammed the door, I tried to sort through all my reactions – smiling because of the way he pronounced dyslexia, bitter because he threw the book and we have been trying to help… Continue reading Just Because It’s Difficult, Doesn’t Mean You are Doing it Wrong

Dyslexia · Parenting · Special Education At Home

Momma, Why Can’t I Read?

This post was originally published on Not The Former Things in 2014. After reading two books last week, my sweet son was thrilled. I was thrilled. We all were thrilled. But this week, basic words are a struggle again. He sees the words. He knows he used to know them. But his brain just can’t… Continue reading Momma, Why Can’t I Read?

Anxiety · Autism · Parenting

When Being Thankful Feels Impossible

It is officially the week we collectively give thanks. It’s good. It’s right. It’s tradition. And sometimes…it feels completely impossible.   (This post originally appeared here on Not The Former Things in November of 2014. It feels like much has changed, and yet, as I read own words below, I am struck by how much is… Continue reading When Being Thankful Feels Impossible

Autism · Family · Sensory Processing Disorder

Because Halloween And Autism Can Be Scary

Oh my goodness, Halloween is almost here. And, like every year, I am anticipating it with a certain amount of excitement, and a certain amount of anxiety. If you don’t have a child on the spectrum or with sensory processing issues, you may think my anxiety is about homemade costumes or sweet decorations. If you… Continue reading Because Halloween And Autism Can Be Scary

Church · Dyslexia · Parenting

Why Does Sunday School Have to be School?

It’s Sunday morning. How many families are fighting to get their kids out the door today, and into that Sunday school classroom? When I was a single mom, I used to look at the clock on a Sunday morning and count down the hours and minutes until my sons would be checked in to their… Continue reading Why Does Sunday School Have to be School?

Autism · Church · Grace

When Church Hurts

She came up to me, our first Sunday there, and said, “If your son needs to be in a more quiet place, he is welcome to hang out with me in the lobby. I have the church’s WiFi passcode and he can use it if he has a device. I know it must be hard not to go into the service with the your husband, so this way, you guys can have the hour together.”

I was speechless. And grateful. And amazed.

No one tells you that church and sensory issues are like oil and water. They don’t mention it in OT, or when you get the diagnosis, or even in the books that talk about what to expect.

Yet every mom I know, who has a unique little one like mine, has experienced it.

When ChurchHurts

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Many of you have written me and asked what we do about church. I know why you ask. It’s a loaded question. It’s a question with layers and layers of more questions. It’s a question that I am sad to say I still have no real answer to. It’s a question that we have wrestled with – for years.

For my son, the sensory experience of going to church is something similar to torture (I wish I was exaggerating to make a point).

He enters the crowded lobby with wall to wall people, everyone talking at the same time, various smells of babies and coffee and muffins and perfume, getting bumped here and there because it’s not time for the service to start, people  still talking and welcoming and trying to hang on to their children as they run for the donuts and other children .

When it is time to start, he has the choice to attend with us where the worship music that everyone else seems to enjoy is overwhelmingly loud and painful, the lighting is weird and makes his eyes hard to focus, and the pastor is talking into a microphone, which blurs the words into a series of loud or louder sounds that he can’t make out. It’s all just noise, painful and overstimulating.  But it is better than the Sunday school classroom, with even louder kids, confusing social situations, worse smells, a teacher that keeps asking him to read aloud, answer questions, engage in crafts. He can hear the other kid’s pencils and crayons as they move across the worksheet – the sound of a writing instrument on paper is more searing than the loudest noise all morning. It’s like a drilling noise, in his ear, constant and overwhelming.

No matter what he chooses, when church is over, he is exhausted and anxious. He makes his way back through the crowded lobby and the smells and the people touching him and the kids playing. Then he hears me say, “We should go out to lunch.” Knowing this means more smells, clanging kitchen noises, the constant buzz of conversations at other tables, and the horribly loud music they play in the background. He panics. The meltdown begins.

This. Every. Single. Sunday.

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I wish I knew five years ago. I wish I realized the extent of it even six months ago.

It saddens me to say that for years I forced – literally dragged him out the door on Sunday mornings. I thought I was doing the right thing. I love church. I thought he would too, eventually.

It makes me a little sick to think that I worried more about what other people thought about us missing a Sunday, or his behavior at church on a Sunday, than the pain he was feeling. I was concerned with others, more than his precious heart.

It angers me that when we finally made the decision to divide and conquer, with one of us staying home each Sunday, or worse yet, when we both started staying home on Sunday mornings in an effort to figure out what God would have us do, we were met with judgement and accusation.

And, it delights me that when we took the painful part of learning about Jesus out of the conversation with my son, his heart began soften. He began to not be so fearful and purposefully removed from our conversations about God, and instead relaxed, learning, listening, and even starting to engage.

I know we are not alone in making this type of decision. I know of one family that conducts “family church” at home together, every Sunday. They study the Bible and sing hymns and pray. It is the best they can do.

I know of another mother that, one Sunday, was asked to keep her child out of children’s church – because it was disrupting the other children and making it difficult for the teacher. This momma went home and cried all Sunday afternoon.

Kristine Barnett, in her book The Spark: A Mother’s Story of Nurturing, Genius, and Autism, shares that people at church questioned her parenting ability and thought her autistic son was spoiled. She overheard a joke being made about him. One Sunday, she picked him up, walked out in the middle of the service, and didn’t come back to church for years.

Temple Grandin, a woman with high functioning autism, also addresses this in her book, The Way I See It, . She talks about going to church as a child in the 1950’s when there was predominately organ music. She says she does not think she would ever be able to attend a modern church service now, with all the loud music and microphones.

We are not unusual, at least in the world of sensory dysfunction. But it feels like we are.

For now, we are taking each Sunday as it comes. We know another mom in a similar situation who is willing to trade-off with us – she goes to church one Sunday and we keep her son. Then we switch and she takes ours so we can attend. We also have the very gracious offer I shared from the gal in the lobby. We may take her up on it. She doesn’t know my son, but her heart is so genuine and her desire to serve so obvious, I think my son would love her.

For those of you who do not make this choice every Sunday, please have grace for those who do.

Anyone I have spoken with in this situation, does not make these decisions lightly. This is not a willful disregard for the Bible or the church. We love the church and genuinely want to serve and be a part of it. If you have an idea that you think may help, offer it. Please. We need the church. We need the body of Christ. We need our children to have a place at the table.

For those of you who share our circumstances, I want to encourage you to make the decision that you know to be right for your family. Seek counsel from wise friends, who understand your situation. Whatever you decide does not have to be permanent. Your child and your family are uniquely gifted to you by God. You may need a unique approach in this season, in order to serve and glorify Him.

He called a little child and had him stand among them.  And he said: “I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven.  Therefore, whoever humbles himself like this child is the greatest in the kingdom of heaven. And whoever welcomes a little child like this in my name welcomes me.” Matthew 18:2-6

Jesus

Image from The Jesus Storybook Bible.

 

Autism · Dyslexia · Grace · Marriage

Motherhood – One Step At A Time

“Mommy, that would be so boring,” he said. “What?” I asked, sighing and thinking he was missing the whole point. “Walking around that big wall, for six days with nothing happening.” I looked down at the children’s bible in his sweet but very dirty hands. “Yes, I guess it would be,” I answered, beginning to… Continue reading Motherhood – One Step At A Time

Autism · Sensory Processing Disorder

How We Have Accommodated My Son’s Sensory Processing Disorder

I pushed against the coffee Keurig, with almost all my weight, while my glorious cup of coffee brewed. When I stepped away, my friend asked, “Why do you do that?” I looked at her, blinking and almost not understanding the question. Because it has become second nature to me, I don’t even realize I am… Continue reading How We Have Accommodated My Son’s Sensory Processing Disorder

Autism · Sensory Processing Disorder

Learning To Embrace God’s Design For My Children

He really, really wanted to see that stinky flower. For months, he had walked by the “titan arum” at the gardens and told me all about it. How it’s like a once in a lifetime thing to actually see it bloom, how rare of an experience it would be, how it actually smells like rotting… Continue reading Learning To Embrace God’s Design For My Children