Brave Enough to Help

The sounds of happy children waft toward me as I walk into the children’s museum to pick up my 5-year-old son after a class field trip. I find him with the other students in the lobby, listening to their teacher read a story as they wait for the parents to arrive. Henry’s voice tears through the sweet atmosphere as he spots me, screams and melts down in front of his classmates.

Earlier, the entire class had ridden the city bus to the museum, and Henry wants to return in the same manner. No amount of consoling is going to fix this. Somehow, his teachers and I failed to prepare him adequately for this part of the day. A spotlight seems to be on the two of us as he continues to melt down. I feel the stares sear into my back.

Click here to continue reading on one of my new favorite online spaces, Kindred Mom.

“Kindred Mom is a gracious online community dedicated to helping moms flourish in motherhood. We believe motherhood is a sacred and beautiful journey of discovery and we are committed to holding space for moms who are looking for connection, guidance, encouragement, and truth about the incredible role of a mother.”

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 7-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

The Rodeo in the Back Row

Today’s heartwarming and hilarious story is from Sharon Peterson at A Stone’s Throw from Perfection. I think you’ll love her words as much as I did.


One of my dearest friends attends the same church as us.  She and her husband have three adorable little girls and every Sunday these three little girls sit quietly with their mother and father.  They look like stair steps, going from oldest to youngest, dark hair-light hair-dark hair.  They may color or draw or sometimes play on a Kindle quietly.  Once and a while, one of them will curl up and fall asleep in one of their parents’ lap quietly.  If one of them has to use the restroom or get a drink of water, they ask for permission quietly.

Did I mention how quiet they are?  

Our family sits in the second to last row, way, way in the back.  Because when you look at our row, it’s not sweet little ones sitting quietly.

No, our row is more like a rodeo.

I wish I could tell you Sundays were easy but they aren’t.  If I’m not careful, I start to resent them.  Six days a week, at least one of the boys has therapy, and the seventh day is Sunday.

It’s not a day of rest, folks. 

First, there’s getting everyone ready.  Racing around to find “church clothes” (I know, I should done that the night before. Don’t judge) and then getting them in the “church clothes.”  Someone doesn’t like those shorts, this shirt has a hole in it, and is that even clean?  (Must have grabbed it from the wrong mountain of clothes.  Again, no judging).

I’m not even going to bring up the shoes.  

Finally, we’re on our way.  This is usually the point where my husband and I get in our weekly fight.  I have no idea what it’s about, why it started, or who wins.  I just know by the time we get to church, there is some door slamming and walking off in a huff.

Sunday school is next and it’s not so bad.  There’s some singing and some chanting and then everyone goes with their respective age group.  At this point, we have taken our six year old son, Gideon, with autism (who is still potty training) to the bathroom 14,671 times and had one success and threatened Daniel, our oldest son, also with autism, 9,643 times about appropriate behavior in Sunday school and had one success there too. But we’re okay.  We’re fine.

Then 10:30 rolls around and it’s time for big church.

One of the things I love about our church is that it’s very family-centered.  Children are encouraged to stay with their parents during the service.  Our pastor has four children of his own and he’s learned to block out “kid noises,” like most parents.  Everyone settles in.  But, for us in the way back, we’re just getting started.

In the last year, Daniel has decided that he no longer wants to sit with us.  So he sits across the aisle.  Each Sunday, he tracks down his First Thousand Words in Spanish book and that’s what he reads.  While I’m not certain he could pronounce them, I suspect if I gave him a test over those words, he’d nail it. Ben, our middle son, tries to finagle his way into sitting with those three sweet girls (because who can blame him?).  I might add, he is an angel when he sits with them.  When he sits with us, well, not so much. Gideon stays with us through the first 20 or so minutes of the service before he goes to children’s worship training.  Gideon likes to lie down.  He’s not too picky about where he does it.  Draped over several chairs, the floor, on top of me.  It wouldn’t be so bad if Gideon were not a very, very big boy.

This is the rodeo part I was talking about. 

Daniel tilts his chair back, looks at me, grins at my stern look of reproach, laughs, tilts chair back again.  He carries with him a small cloth monkey, a fidget toy, which he employs to annoy the ever-loving snot out of me in various and sundry ways.  Yes, I would like that monkey to disappear.  I never, ever want to say, “Stop playing with your monkey at the dinner table,” ever again.  But for now, the monkey stays.

Gideon is laying on my lap.  “I want water,” he says.  So, I take him to get a drink and Ben follows to go to the first of fifteen bathroom trips. I wait for Ben so we can go back in all together, but he is taking forever so I knock.  No answer.  I whisper loudly that I’m going to come in if he doesn’t come out.  I’m not paying attention to Gideon who is back at the water fountain and had given himself a shower somehow and water is now all over the front him.

Ben finally appears.  “Sorry, Mom, I had to go . . . you know.”  Yes, yes, I know.  That means I make him go back into the bathroom to flush the toilet and wash his hands.

We’re five minutes into service now. Five minutes.

We’re back in our seats.  We’re singing.  Well, some of us are.  Others refuse to stand and yet another is stimming with loud vocalizations and jumping up and down.  Thankfully, our church family is used to us and no one seems to blink an eye. Ben has to use the bathroom again. Then the worst thing happens.  A new family sits behind us.  I panic.  Sometimes I want to carry around business cards that I can hand out quickly that read, “Please excuse us.  We have two children with autism. We apologize in advance.” Instead, I smile (nervously) at them.  Ben comes back from the bathroom and then proceeds to spill 1400 Legos all over the floor. (Who was the dummy that let him bring those?  Oh yeah.) And Gideon wants more water and he’s gonna pinch me until he gets it. These chairs should have seat belts and complimentary rolls of duct tape.

I am exhausted at this point.

Finally, Gideon is whisked away for worship training by a buddy (another way our church has been amazingly supportive of our family).  Ben gets to play with his Kindle during the sermon so he commences to blowing stuff up or building spider spawn or whatever Minecraft stuff it is he does. Carl and I can relax.  This may be the first and only 20 minutes of our whole week where we aren’t worried about Gideon breaking anything. Katherine, the youngest, is safe in the nursery.  Ben is quiet. Daniel is occupied for now.  We can finally be still and listen to the sermon.

But I have to make a confession.

Sometimes I fall asleep (we still aren’t judging).  It’s not intentional. I’m not doing it because I want to.  It’s just so quiet and I can finally relax for 15 minutes and before I know it, my eyelids get so heavy and then I’m jerking back awake. I’m sure God doesn’t approve but then again, God also knows how just plain worn out I am and maybe He understands.

He does give rest to the weary, right?

Being part of a church body is very important to us.  And, may I just say, we have an amazing church family, one that has loved on us, taken care of us, prayed for us, laughed with us, cried with us, and still seem to want us.

So, we will put up with the rodeo that happens in our row in the back.  We will apologize when one of the kids is having a rough day . . . or a normal day.  We will smile (mostly) and feel blessed to be part of our church family because they accept each one of us as a child of God.  Through them, we can see God’s love in a very tangible way.  Maybe some of our children aren’t able to fully understand that, but they can feel it and they know they are loved.

That makes the rodeo worth it.


Sharon Peterson lives in Texas with her husband of fifteen years, four children, two cats, and a hermit crab. Two of her children have autism, one has dyslexia, and the youngest is three and the only girl. When she’s not hiding in a closet, she also homeschools, writes, reads, is actively involved at her church, and dreams of a bathroom trip uninterrupted. Finding laughter and beauty in a crazy, mixed-up world is one of her passions. She is currently working on her first novel.

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 7-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

Why do we need Autism Acceptance Month?

Autism Acceptance Month* is here. Since you’re reading this, you may feel as if this celebration isn’t needed. You’re aware. You accept. Doesn’t everyone? Sometimes I feel the same way. But then something happens to remind me that not everyone lives autism awareness everyday.

Someone asks me about vaccines. Someone asks me if Henry will grow out of it. Someone tells me she doesn’t know much about autism but really wants to learn. Someone asks me about the percentage of Americans with autism and drops her jaw at my response. Someone wants to know the difference between autism and Asperger syndrome. 

I am thrilled to be able to answer those questions, to direct people to resources, and to do so with grace and love. When someone cares enough to ask, I’ve seen their heart.

So, why do we still need Autism Acceptance Month? Because people still don’t know.

I live this every day, and maybe you do too, but many people do not. And they don’t need to live it every day, but they do need to know about it. Why?

Chances are, we all know someone on the spectrum. The CDC estimates 1 in 68 children in the US are diagnosed with an Autism Spectrum Disorder. This number isn’t mean to induce fear; it is a statement of fact. More humans have atypical brains than we once imagined. Due to advances in science, knowledge, and understanding, more people are now diagnosed than ever before. (For more on the history of autism, I recommend Steve Silberman’s Neurotribes.)

Not understanding autism prevents us from living out Matthew 7:12: “So in everything, do to others what you would have them do to you, for this sums up the Law and the Prophets.”  We can cause deep, long-lasting harm when we don’t know how to interact with those who process the world differently. As Christians – as humans – we should want to avoid this.

We are all made in the image and likeness of God; therefore, we all have inherent value and worth. We deny ourselves part of the fullness of human experience when we don’t take time to understand. Learning about others enriches our own sense of humanity, which in turn increases our empathy.

What will you do to raise acceptance this April?
Be sure to click “Yes, please!” at the top of the page for suggestions.

 

*I use Acceptance instead of Awareness here, in keeping with the preference of the Autistic Self Advocacy Network.

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 7-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

He doesn’t wear jeans.

I gather my toddler into my arms and ease into the rocker for our pre-nap snuggles, the favorite part of my day. Henry curls into me as I begin to rock and hum.

A mere moment passes before he sits up and declares, in his sweet baby voice, “Close!”

“What is it, honey? You want me to close the door?”

“Close! Close!”

“The door, baby? You want Mommy to close the door?”

“No! CLOSE!”

I don’t know what else to do, so I get up, close the nursery door, and return to our position in the rocker.  Clearly frustrated, Henry slides out of my lap, shuffles across the room, and opens the door. I follow him in amusement as he makes his way to my bedroom.

The industrious and determined little fellow throws open a drawer in my dresser and moves shirts around until he finds what he is looking for. He pulls out a soft, fuchsia tee I often wear to exercise and shoves it at me.

“Dis!”

“You want me to wear this?”

“Yes! Dis!”

He wasn’t saying “close.”  It was “clothes.”

I change my shirt, not out of obedience to my toddler but sheer curiosity. He marches back to his room and resumes his place in my lap, quickly falling asleep on my now acceptable shoulder.

*****

This is my first memory of a sign Henry had sensory processing problems, although I didn’t recognize it as such at the time. Instead, it was one more story of Henry’s amusing independence and strong will. “He knows what he wants!” we explained with a chuckle.

Children with Sensory Processing Disorder, which often accompanies Autism Spectrum Disorder, can have unique clothing needs. Some wear their socks inside out to avoid feeling the “bumps” (seams) across their toes. Others can’t tolerate the feel of buttons or zippers. Tags are an almost universal nuisance.

Henry needs soft.

He began protesting against jeans around age 4, but I paid it little attention. Over the next three years, the protesting increased exponentially. In kindergarten he wore jeans a handful of times when I fought him over it. This year he hasn’t worn them once.  My first grader doesn’t wear jeans.

On Sundays he wears chinos he has approved for softness. Monday through Saturday he wears “soft pants.” You might know these as track pants, sweatpants, or athletic pants. In other words, the young Meredith who would not have been caught dead in sweatpants at school is now raising a child who wears nothing else. God is super funny like that.

When the weather began to cool last fall, I asked myself some serious questions:

Why do I want him to wear jeans?  (Because I like them. They’re cuter. Polo shirts look dumb with sweatpants.)
Is this a good reason? (No.)
Does he need to wear jeans? (No.)
Will not wearing jeans have an adverse affect on his education or social life? (No.)

When I came face to face with the fact that my personal taste was the only reason for Henry to wear jeans, the decision was made. You know what they say about picking battles? I wasn’t picking this one. Not anymore. My first-grader doesn’t wear jeans, and that’s ok with me.

Henry in soft pants.
New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 7-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

When the permissible becomes an idol

Not all sin is clear-cut: it’s often deeply tied to our motives and our hidden choices. I have zero judgement on anyone else’s choices. Conviction isn’t one size fits all.

After all, I was fine with drinking for a really long time until all of a sudden, I wasn’t anymore.

Sarah Bessey

I’ve been transparent about a period of severe depression after Henry was diagnosed. It’s not so much the diagnosis that causes depression as it is the extraneous details. It’s the devastating reactions from other people; the ridiculous amount of research, paperwork, and appointments; the difficult decisions; and the loss of sleep. Every parent needs extra care during this time, but for a person who already struggles with perfectionism and maintaining mental health? Well, it’s a recipe for disaster.

What I haven’t shared publicly until now is that I turned to alcohol. It began with one glass each night, but pretty soon one glass wasn’t enough. Two glasses of wine each night dulled the pain, took the edge off. Whatever words you want to use, it all means the same thing: I was dependent. I was never drunk. Henry was never in danger. I was dependent, nonetheless.

I don’t remember how or why, but gradually, my habit scared me. I didn’t need rehabilitation, but I needed a hard, honest look in the mirror. Jesus was calling me to lay this down. I felt a deep impression in my soul.

The drinking is not the problem. It’s anything you use in place of Me.

Did I just say drinking was my idol?  I think I did. I needed Jesus to deal with the pain, not wine. I needed more time on my knees and less with a drink in my hand. And it’s not that I wasn’t already spending time on my knees. I was a Christian. I prayed and read my Bible and cried out to God regularly. Sometimes hourly. Really. But I still drank every night, and that was not ok with me.

It wasn’t the first time I tried to dull pain with something other than God’s presence. In a previous season, I found myself losing weight rapidly, unable to eat or even look at food without feeling nauseated. There was no purging, no intention of losing weight. It was simply an inability to eat. The nausea subsided within a couple of months, and the pendulum swung in the other direction. One evening I found myself standing over my parents’ kitchen sink, spooning strawberry cake frosting into my mouth. Most nights, I stayed up later than everyone else and ate a second bowl of ice cream, even though I don’t crave ice cream. At the same time, I meticulously tracked every mouthful and weighed myself every day. I was both disgusted with my mindless sugar intake and unable to stop.

The sugar obsession disappeared almost as quickly as it arrived. Not until years later was I able to see the reason for its disappearance was the reappearance of my mental and spiritual health. As dark and painful as they are to remember, these two seasons tell me everything I need to know about how my body handles intense periods of stress. I numb pain with idols.

Lay it down, Meredith. This has come before Me.

By the time I realized my drinking had become an idol, the nightly drinking had ceased, but the shock was enough to put on the breaks. Me? I’ve been outspoken about compassion and recovery for addicts since I was a teenager. Me? The one people tease for not drinking?  Yes, me, and since Lent was approaching, I could not think of a better way to make room for Jesus.  Those 40 days changed me, and it was the first time Lent made any sense.  Ann Voskamp says, “One needs to be dispossessed of all the possessions that possess us — before one can be possessed of God.” So, I dispossessed myself of what possessed me, to make room for God to fully live in me.

It is this part of my story that propels me toward both the women who still suffer in silence and the women who have fought and overcome the monsters in the deep darkness. We are a wounded bunch of recovering perfectionists and good girls. We clench tightly to our self-hatred like treasures in a buried chest, not daring to expose them to the light.  We turn to alcohol, under-eating, over-eating, exercise, sex, and shopping. We do so under the guise of what can be wonderful, harmless fun like “retail therapy” and “girls’ night out.” And it’s all ok, until it’s not.

Lay it down. This has come before Me.

Today, I endeavor each day to maintain a healthy mind and spirit. I am keenly aware of triggers and temptations. I seek help before falling into despair or turning to pain-killers. And I stand guard. If I feel I’m too close to an edge in any of my choices, I ask for help to step back to safety. I refuse to become possessed again, not by sugar or alcohol or anything else. I will be possessed neither by tangible things nor by attitudes like insecurity, anger, bitterness, resentment, or self-pity. I want my spirit to be fully open to God, to being renewed and transformed.

I used to have a problem. I used to be dependent. Now I am free.

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 7-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

How to Trust Your Instincts

Sometimes trusting my instincts is easy, like putting down the mop when Henry needs me. Other times it’s more like a spiritual battle.

Ok, God. This is a huge decision, and I think I know what to do, but do I really? I mean, is this direction from you? Or is this my emotion? Am I being influenced by other people? I really want to do the right thing here…                

Recently, I asked a group of special needs moms if they ever struggle with trusting their instincts in raising their children. Many of them answered with an emphatic no. Some of them answered no, though they admitted it was because they had learned the hard way. At some point in their past, they had trusted someone else instead of their own intuition, and their children had paid the price. A good number admitted, yes, they still struggled to trust themselves. Some of their reasons include:

Other people “get in the way.”
“Only when I listen to other people.”
“I’m scared because no one else agrees with me.”
The ‘experts’ don’t agree.
“Self-doubt”
Paranoia
“I have a lot of anxiety, so I overthink a lot.”
“Yes, sometimes, because I’m not a medical doctor, a therapist, a teacher, even though I do all these things.”

I’ve felt the pressure of all of those reasons, and I know how difficult it is to dig in my heels and stand firm in what I know is right.  I know God loves me no matter what, and I know He knows my heart.  Still, I want to learn to hear to His voice. I want to know how to trust my Spirit-led instincts. Don’t you?

Yes, please!   I want to trust my instincts!

I’ve culled my favorite tips after years of trial and error, studying God’s word, and reading books from trustworthy Christians.  If you would like to know my time-tested way of discerning what is from God and what is not, then just click right here. Then, I hope you’ll use it and let me know what you think. Do you have any tips to share?

 

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 7-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

The delicate balance between love and indulgence

My brand new steam mop was ready to go. I smiled, started my iTunes, and grabbed the handle, eager to try out my new toy.

(I know, I know. You’re rolling your eyes. But I like housework. Well, most of it.)

Have you ever used a steam mop? It’s kind of amazing. I could hardly believe how well it was cleaning my floors with no more than water. Elated, I stopped and snapped a quick pic to send to my parents, who had gifted me the mop for Christmas. “Thank you! I’ve never loved mopping so much!”

On I continued around the corner, singing along to the tune in my ears, when I noticed the mop was no longer working. Turning my head towards the electrical outlet, I spied the cause.

Henry was holding the cord, grinning at me.

“Henry, that’s not funny, bud! Let Mom finish.”

He giggled and replaced the cord. No less than a minute later, my mop stopped working again. I saw the same sly smile and pondered what to do.

Could he be trying to tell me something? Does he want me to play with him? Is he bothered by the sound of the mop or is he just being silly? Wait… regardless, he wants my attention, right? 

See, I hear myself saying, “Just a minute, Henry,” an awful lot. I have to finish loading the dishwasher or flipping the laundry from washer to dryer or finish grading one more paper. And I hate that phrase, just a minute. I hate feeling as if I’m putting him off, when he’s really the most important piece of my world.

I wrestle with the fine line between assuring my child he is important to me and overindulging him. I want him to know when he calls my name, I’ll be there. I want him to know I value what is important to him. I want him to know he can call me from college at 2am because his heart is broken or he’s terrified he’s going to fail a test.

But I also want him to know that chores must be done. I want him to know the meaning of responsibility and that, in our family, we follow through with our commitments. We honor each other and treat each other with respect by carrying our weight.

With all those hopes, what’s a mom like me to do when her son unplugs the mop?

Sometimes, she asks her son not to do that again and to please play until she’s done. Sometimes, she gets frustrated because she’s in a mad dash to clean the house before company arrives.

Other times, she postpones mopping to another day. She chooses quality time over cleaning time. She knows if she says no too many times, she won’t be asked again. She remembers this life is but a breath. We mamas have a unique capacity to see both backward and forward. We see the baby that was and the adult that will be, and we soak up every moment in between.

I don’t even remember what we did together after that. Maybe we played a game or maybe we put together some train tracks. Maybe we went outside. All I know is I made a choice in that moment to trust my instincts. I thought Henry needed me that afternoon, and I wasn’t up against a deadline to finish the floors anyway.

The fancy new mop and iTunes could wait.

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 7-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

Why we need to have faith in our kids

Now faith is the assurance of things hoped for, the conviction of things not seen.(Hebrews 11:1)

Last year’s Lent brought forth all kinds of questions.

“Mom, what are graves?”

“Graves are where our bodies go when we die, but our souls go to heaven with Jesus and get a brand new body.”

Lip trembling. “Will I be a kid?”

Softly, I answer, “If you went to heaven now, yes, I think you would probably be a kid. But when adults die, I think they are adults in heaven.”

He turns his face away from me, tears forming in the corners of his eyes. I scoot closer to him in the bed, put my arm around him.

“Are you ok, baby?”

“Yeah, I’m ok.” Wipes his eyes.

*****

I used to wonder if Henry would ever have conversations with us. I questioned his ability to communicate his thoughts and feelings in a way we could understand to form a response. I knew his brain processed and problem-solved; this much was abundantly clear. What wasn’t so clear was his expression and if we would ever know the fullness of his intelligence and emotion.

The answer is no.

We will never know all his brain is thinking. (But isn’t that true of all of us? Aren’t all of us a mystery?)

And yes.

We are certain of Henry’s depth of thought, his critical reasoning, and emotional intelligence. We know his virtues and vices, what motivates him and what does not, where he excels and where he struggles. We know that at least once a week, he will recall a scene from his past that sheds light on a moment we didn’t understand. We know he’s a news junkie and a pop culture enthusiast. We know he is an excellent reader but likes math better. We know he hates art and loves music, though he doesn’t like performing and prefers to dance when no one’s watching. We know he cares deeply about his friends and would lasso the moon for us.

What we know for sure is that much of what we knew about autism in 2012 (and that was a lot, believe me – I’m a voracious reader) was incomplete at best. We also know we were right to keep hoping.

I look forward to this year’s Lent and Easter. The discussions that began last year did not end, but they will likely resurface with greater intensity. What moments of beauty, clarity, and revelation await us?

*****

Moms and dads around the country, just like Keith and me, have persevered in the face of doubt and confusion. We’ve never stopped believing in our kids, fighting for our kids, and seeking answers for our kids, even when we’ve had little reason to believe we should. And we’ve seen them soar.

If you ever doubt your child will fly, check out Rhema. Brooke. Owen. Kerry. Temple. Carly. They didn’t talk, didn’t fit any molds, didn’t conform. Yet, each one has defied expectations and risen above all odds. Without their parents’ faith, these individuals’ lives would be much different today.

Let us enter this season of Lent with the greatest faith we’ve ever had – faith in our God and in His ability to do more than we could ever ask or imagine. What do you hope for that you do not yet see?

#defymyths
#assumecompetence

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 7-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

3 Mistakes Every Autism Parent Makes

Last fall I asked a question of autism parents: Did you make any mistakes in the early days of your child’s diagnosis?

Because of my own regrets and hearing those of others over the years, I had a hunch I would see themes develop; I was right. Though voiced through different words and experiences, the mistakes fit into 3 categories. Are you ready? Here are the top 3 mistakes every special needs parent makes:

We blame ourselves.

We blame ourselves for not seeing the signs. We blame ourselves for having the wrong genes. We blame ourselves for what we ate during pregnancy. We blame ourselves for everything. We are experts at looking inward, but we must remember that our hands did not form our children in the womb. They were created on purpose by a holy, sovereign, loving God. Psalm 139:14 affirms we are “fearfully and wonderfully made.”

For the mamas who feel they missed signs, I have a special message just for you: Guess what? I did too. Parenting in the modern age means access to more information than ever, but that’s a double-edged sword. How could we possibly learn and remember the warning signs for every possible disorder, syndrome, disease, and birth defect? We couldn’t. But, we know now. If we remain stuck in the past, we can’t be fully present today. Let’s give our children our best now, so they can be their best too.

We don’t ask for help soon enough.

Sometimes we don’t know what to ask for. Even the most educated, organized, and emotionally healthy parents will have too many responsibilities and concerns at the point of diagnosis to ask all the right questions. Plus, let’s be real. Diagnoses don’t come with a life coach. Many parents don’t realize what is available to them until it’s too late.  My friend Amanda says, “The mistake I made was not completing the forms soon enough for assistance (TEFRA), etc.”

And let’s say we do ask the right questions or, miracle or miracles, we find someone to help us on our journey. One of the most frustrating aspects of special needs parenting is the time required to research, file paperwork, and wait on proper services for your child. If we do everything right, sometimes the funding isn’t available or the wait list is too long. Simply put, time is not on our side.

Other parents make the mistake of not asking for emotional support or respite care. They find themselves physically or mentally ill before realizing they need help. For me, the mistake was not only not asking for emotional support soon enough, but also not asking for practical, around-the-house support. (You can read more about that here.) I wanted to be strong enough to handle everything on my own, but I had a misguided definition of strong. Real strength is recognizing when you need help and accepting the help with gratitude and grace.

The reality is that a sick parent cannot sustain the load of special needs parenting for very long. We’ve all heard the adage, “An empty cup won’t pour.”  The truth is even more grim. When our glasses are empty, we find the emergency rations and keep pouring. We move through our days on autopilot, with no time for mentally or emotionally processing our stress, grief, and trauma. Unfortunately, depending on the severity of our child’s diagnosis, functioning on autopilot for long can lead to PTSD and other mental illness for the parent, not to mention the damage we do to our children by not parenting as our best selves. When we are emotionally empty, we can’t possibly be fully present, engaged, and empathetic. We find ourselves reacting instead of responding and tuning out instead of tuning in.

For more encouragement and advice on both respite and mental illness for special needs parenting, I highly recommend The Unexceptional Mom podcast episodes 18 and 16, respectively.

We don’t listen to our own instincts.

This is probably the mistake I hear most often. In hindsight, it’s easy to see how we would trust others following a diagnosis. What do we know? Most of us haven’t been to school or received training for this. We think, surely, the experts must be right.

Keith and I walked into our first IEP meeting with open minds and fearful hearts. Horror stories and advice from the internet bounced around my brain. Bring food. Smile. Don’t be defensive. Start with the assumption they want the best for your child. 

The team was kind, but as they outlined their recommendations, I bristled. “What about this?” I countered. I thought I knew my options, but I was told those weren’t options. Hadn’t I done my research? What was I missing? The meeting ended; I mustered a smile and thanked them. For what? I wasn’t sure.

Despite the fact these people didn’t know Henry at all, Keith and I told ourselves they were the experts and we were the newbies. We trusted they knew best. Unfortunately, the first IEP meeting resulted in a decision that, in hindsight, did more harm than good. From that point forward, we have always listened to our instincts first and then the people who have proven themselves over time to be trustworthy.

Listening to our instincts may mean pressing hard for testing or evaluation when we suspect our children have a need. It may mean we have to stand up for ourselves or our children in the face of those who think they know best. It may mean educating ourselves on an issue, so we can provide an alternative idea, practice, or strategy. Listening to our instincts may also mean we need to be quiet, because even though we hate what is happening, we know that it’s necessary and good. (Knowing which is which is the trickiest question of all. If you struggle with knowing how to listen to your instincts, I’m developing a resource for you! Stay tuned.)

 


I’d love to hear your thoughts. Would you add anything to this list? Do you have trouble with the blame game, asking for help, or listening to your instincts? Comment here or on Facebook or drop me a note at meredith@meredithmdangel.com.

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 7-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

“Deficits in abstract thinking” or differences in abstract thinking?

Disclaimer: Our experience is our own, and I don’t pretend to know the capabilities of all 7-year-old boys with autism.


We sat side-by-side at the little table, feeding the teddy bear with a spoon, as the smiling therapist kneeled beside us. He was learning through structured play; I was learning how to facilitate structured play.

Even as I saw potential for this strategy in other areas of Henry’s life, I knew one thing: My child would never play with stuffed animals. Period.

It was an example, really. An exercise. No one in the room expected Henry would love playing with stuffed animals. But it made me think.

Will he ever understand and participate in abstract play?

*****

Yesterday, I climbed the stairs to the sounds of Henry playing in his train room. I turned the corner and saw a beautiful tunnel created from Magna-Tiles. We smiled at each other as I told him I was proud of his sculpture. 

In our home Legos aren’t for building. Legos are coal and rocks and cargo for trains.

In our home wooden blocks and Magna-Tiles create bridges, ramps, and sheds.

In our home anything cardboard becomes a tunnel.

In our home we’ve (almost) stopped wasting money on toys we know won’t be loved and encourage his passions instead. 

This is Henry’s creative play. This is his abstract play. He rifles through both the closet and the trash for new ways to build on what he already loves. He doesn’t not understand how to play make-believe; he simply does so in unconventional ways. He avoids action figures for the same reason I avoid the gym; he doesn’t like it. He’s not incapable; he’s decisive.

Maybe autistic people don’t have trouble with abstract thinking. Maybe they just do it differently.

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 7-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.