When they don’t want to trick-or-treat

You may have noticed I’m in favor of empowering the disenfranchised and remembering the forgotten, even for something as trivial as Halloween. I encourage parents of neurodiverse children to tackle the holiday in non-traditional ways.

But guess what?

If your children with autism or sensory processing disorder DON’T WANT to participate in Halloween activities, that’s ok too.

Yes, really.

It’s not a requirement of childhood to wear a costume, to ask neighbors and strangers for candy, to take a hayride, or go to a carnival. It’s not. If your kids are making their own fun or even treating Halloween as an ordinary day, then pat yourself on the back for giving them the space to do what they need.

This – allowing them to do their own thing – is usually harder for the parents, who grieve what they feel their family missed. What we tend to grieve are our expectations, not our reality. Allow yourself the grief, especially if this is your first set of holidays post-diagnosis. It is normal and healthy to grieve and there’s no timetable for how it’s done. Let yourself feel it. Don’t squash it. And then… one day… it won’t sting anymore or will sting less sharply. The beauty will be stronger than the grief. Remember, love is stronger than hard.

 

“You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence. … We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you.”  – Jim Sinclair in Loud Hands.

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 8-­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 trick-or-treat with autism

If your children with autism or sensory processing disorder WANT to participate in Halloween activities, there is no reason why they can’t.

Yes, really.

Your Halloween might not look like your neighbor’s or your best friend’s or even your own from childhood, but that doesn’t mean it’s less special to your child. Find out what your child wants to do, and then:

1. Prepare, prepare, prepare.

* Let them choose costumes that make them feel good. Superhero pajamas, a favorite hat, or even their favorite regular clothing are just fine. (Note: I hope no would make an ugly comment to a child not wearing a costume, but if they do, you have the opportunity to kindly educate! If you don’t want to use words, you can silently hand them an informational card. Don’t forget a smile.)
* Practice the words or signs to use.
* Talk through what to expect, if this is their first time.
* Make or find a social story.
* Act out the plan with their favorite toy. (Use dolls, action figures, trains, cars, blocks, crayons – anything can have a “voice”!)

2. Plan an escape.
* If traveling by car, don’t hold yourself hostage to another person’s timetable. Drive your own.
* Know the layout of where you are going (carnival, festival, neighborhood, etc.) so you can quickly get to a “safe zone” or your car.
* If your children seem nervous or hesitant, assure them that they can stop/leave at any time.
* Have comfort items on hand for decompression.

How does your family do Halloween? I’d love to hear! Leave it in the comments or drop me a line at meredithdangel(at)gmail(dot)com.

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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 8-­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.

For the autism moms who dread Halloween

I see you, the moms carefully prepping for October 31.

I see you carefully creating costumes that won’t irritate.
I see you scouring the web for the perfect pieces.
I see you sewing.
I see you driving all over town.
I see you ripping out the tags.
I see you crossing your fingers.
I see your sigh of relief when it works and the frustrated tears when it doesn’t.
I see you rehearsing the way to trick or treat, preparing for the sensory assault, and fine-tuning your evacuation plan.

I see you on October 31, moms of the children who want to be brave.

I see you sending off your anxious but resolute daughter into the carnival.
I see you assuring your son it’s ok not to wear a costume.
I see you crouching, soothing, whispering.
I see you cheering them on, showering them with praise.
I see you holding everything together.

I see you, too, moms who are proud of your children’s self-advocacy.

I see how you make the night special for your family anyway.
I see your children handing out candy instead of receiving it.
I see you together inside, hiding from trick-or-treaters, watching favorite cartoons for the thousandth time.
I see you popping corn, reading books or playing games.
I see you watching “It’s the Great Pumpkin, Charlie Brown!”

I see you, moms who are speechless when friends show kindness.

I see your gratitude when they attempt to include you in their plans.
I see you answer the door with joy when they stop by to bring your child a treat.
I see your lip tremble as you read the text, “How are you? Is the day going ok?”

I also see you when you feel alone.

I see how you lay down all your dreams to make new ones.
I see you when the friends don’t call, don’t message, don’t stop by.
I see you when you feel forgotten.
I see you cleaning up the remains of dinner, eyes threatening to spill, as you carry the tension between contentment that your child is happy and disappointment that you aren’t.

And I see you on November 1, when life returns to normal, whatever that means.

I see your shoulders relax because you made it.
I see you already preparing for the next big thing.
I see you loving, guiding, and praying.
I see you shepherding your child to be the man or woman God designed him to be,
and I see you making the world better for your child.

I clap for you, moms. I’m proud of you. I am you.

No matter what you’re feeling this October, I see you.

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 8-­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.

Love is stronger than hard.

I follow a lot of special needs writers, organizations, and networks, and I see 2 basic attitudes:

Life hurts all the time.

Life is hard, but love is stronger than hard.

I choose to adopt a voice like the latter, not because it’s the easiest way but because it is the best way for me. The way that builds my character to make me more like Jesus. The way that leads to life and not destruction.

Enter through the narrow gate. For wide is the gate and broad is the road that leads to destruction, and many enter through it.  But small is the gate and narrow the road that leads to life, and only a few find it.  (Matthew 7:13-14)

This is not to say the writers voicing the pain every day are becoming less like Jesus. No, in fact, I believe they are making sacrifices each day that bring them closer than breath to Jesus. The other folks have their own purposes (or not) and I am in no position to judge. To look for the beauty and love is the way Jesus has called me to live, because he knows what is good for me. 

On my birthday, my dear cousin wrote to say she loved that I see the bright side in everything.

She is right. I do. My smiles aren’t false; my joy is real. Unfortunately, so is the tendency to grow stormy when I’m alone, whether I’m navigating interstate traffic or sitting on my porch in the sun. It is with my intention and God’s grace that I fight the demons of the dark.

My factory setting is melancholy. While I easily forgive others, I find it harder to forgive myself. (I am a Good Girl in perpetual recovery.) I see my flaws and failures; I feel worthless and unloved; I long for death and not life. This is my default.

But we do not have to stay in our default settings. We have a hope and a realistic power to be more. It’s called Christ.

It is neither my strength nor my gumption that makes me see the bright side. It’s Him. He fills me with warmth and gratitude. He lifts my head when I cannot and opens my eyes to life when I see death. The law of the Spirit, alive in Christ Jesus, sets me free.

My life can be hard, but greater is He who is in me than the one who is in the world.

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 8-­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.

What I (Re)Learned This Summer

This summer I seemed to re-learn old lessons more than I discovered new ones. I’m late to Emily’s link-up, but I’m technically on time since fall is still 2 days away, right?

Can doesn’t equal should. My friend bought an Apple watch and took it back. He said it was cool, but not that cool. He couldn’t justify the expense with the little he used it. Sure, someone could teach him more functions and show him more apps, but he didn’t need them. A lover of gadgets and toys – one who waited in a line around the block for the very first iPhone – admitted the cost of the watch outweighed the functionality for him. I’m always thinking about this idea of can vs. should, but my friend’s choice renewed my curiosity. I can do this or that, but should I? Does it align with our family values, my personal goals, and God’s nudging?

I need to pick up the phone. A friend had major surgery this summer without us knowing about it. Every time his wife crossed my mind, I should have stopped what I was doing and listened to the voice that said, “Call her now.”

Not now doesn’t mean never.  Henry can now open gifts in front of friends without telling them exactly what he thinks of their gifts. Wow, what an accomplishment!

To everything there is a season, even awesome things. I canceled my membership to an online community I loved. I realized if I continued to pay for it, it would be for silly reasons – not because I needed it. The direction the group was heading, while wonderful and powerful and beneficial for many, was no longer beneficial for me, and admitting this to myself was hard. When I let go, I knew it was the right decision because I felt more free.

What did you learn this summer?

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 8-­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 you need less stress

With the start of the school year, I know many parents are already feeling overwhelmed. Here’s how I tackle the temptation to stress:

1. Claim your family values. What are the core beliefs that define your family? Once you own them, take joy in them! Delight in saying “yes” to rituals, traditions, practices, and events that match your values and fulfill your goals. Also, allow yourself the freedom to alter some values seasonally. For instance, showing God’s love through hospitality is always a core belief for us, though the expression of it can change over time. A focus on a particular person or group today may not be our focus next month or year.

2. Then, practice the delicate art of saying “no.” It’s the only way to give your most important “yes.” They say our calendars (and bank accounts) reflect our priorities, so we must schedule wisely.

In the 21st century, many of us respond to the tyranny of the urgent. One of the characteristics of a responsible adult is to recognize the difference between the important and the urgent, and then refuse to be tyrannized by the urgent; refuse to manage by crisis.  

– Tsh Oxenreider, “Create a family purpose statement”

I filter my choices through the values I’ve established. Last year, for example, I stepped down from a church committee in order to devote myself more fully to another one, which presented a greater need for my passion, gifts, and skills.

What is important? What is urgent? What might be important later but not now? What is never important? What might be someone else’s “yes” that you’ve been guilted into making your own?

3. Utilize practical systems.  What burdens you most? Whatever it is, tackle it with a streamlined system that will actually work for you. Don’t try to adopt someone else’s great idea if you know you won’t use it! The internet is full of great resources, but here are a few systems I like:

  • Plan the week’s suppers on Sunday.
  • Set up a lunch-making station or pre-make lunches for the whole week.
  • Shop once. We all forget things from time to time, but if you can plan ahead and strive for one set of errands as opposed to several stops throughout the week, you’ll save yourself time, gas, and frustration.
  • Develop routines for household chores. (Laundry on Mondays, shopping on Tuesdays, etc.)
  • Go paperless. Use online bill pay and online apps for keeping household records. (Evernote, Mint, and Google Docs and Sheets are a few we love.)

4. Slow down. James Bryan Smith offers several suggestions for how to practice slowing down in his book The Good and Beautiful God, and I love what he says here:

Slowing down the pace of our lives means eliminating hurry and limiting the demands and activities in our lives. Then we are more likely to take delight in our lives and make room for God.  (p.189)

How can you practice slowing down? Stroll through a parking lot instead of rushing to the door. (I’m the pot calling the kettle black.) Make yourself drive in the slow lane. Eat a hot breakfast. Take your time in the shower. Slow your hands as you wash your small child in the bath. Stop multi-tasking.

5. Breathe. Yes, just breathe. I don’t mean take a walk. I don’t mean turn on music. I mean sit in silence and breathe. How long do you need? 30 seconds? 5 minutes? That all depends on you, and you won’t know until you try, but I guarantee even the most thriving extrovert needs to still the noise. Our souls weren’t made for the constant onslaught of information and sensory input; they need moments of quiet.

When we sit in silence, it’s true we may not be doing anything, but we are undoing so much. The soul is made to receive. […] The soul receives input all day long from both welcome and unwelcome sources. Where is the output? When are we regularly disposing of the soul clutter we no longer need?

– Emily P. Freeman

Let me know how these ideas resonate with you. May you feel less stress and overwhelm this school year!

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 8-­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 is seen

Henry has just turned 6. The party now over, we open gifts as a family in the safe space of our living room. Henry opens a Spiderman toy from his classmate and bursts into tears.

“But he knows I like trains! He knows I don’t like Spiderman! Why would he do this?”

I attempt to gather him into my arms, but he will have none of it. His brain is on fire, reeling from this perceived betrayal. Hot tears spill over his flushed cheeks. I try to explain that his friend’s mother probably bought the present. I remind him how his classmates often draw trains for him at school. They know, I assure him. Still, Henry wails, “But why didn’t he tell his mom? He should have told her!”

The hurt in his eyes is almost too much to bear. To an outside observer it would sound bratty, but I know better.

If you know Henry, then you know how his mind works. You see the anguish on his face, and you know this reaction is more than spoiled selfishness. It’s authentic pain and genuine confusion. His heart is broken.

He longs to be seen.

*****

One day this summer, while driving down a country road, Henry declares, “Mom, this year I want to open my presents in front of my friends.”

“Ok, bud. Remember, if you open a gift you don’t like, you’ll need to keep it in your thought bubble. You’ll need to say ‘thank you’ no matter what. Let’s practice. Pretend you just opened a gift and…”

“No no no. I changed my mind. I’ll open them later.”

I understand we’ve crossed a line; there will be no more talking about this today and maybe not at all.  “Ok,” I say, “we can talk about it another time.”

Though he mentions it only in passing one more time, he is steadfast; he will not open his presents in front of his friends.

On the day of his party, somewhere between water balloons and snow cones, Henry walks up to me. “Mom? I want to open my presents now.”

“Remember the talk we had about it? Can you do it?”

“Yeah. I want to do it.”

So, he does. Henry opens gifts from friends at his birthday party. He smiles genuinely, expresses authentic gratitude, and never tells a friend he doesn’t like their selection. If negative thoughts are in his thought bubble, I see no evidence of them. It’s a morning of birthday wishes come true.

*****

Days after the party, Henry pauses in the middle of play and points to a new train set.

“Mom, remember when (my friend) gave me that Thomas set for my birthday? He thought about me, because I like trains.”

I am transported to that evening two years ago, the evening of inconsolable tears, and I am relieved. He knows now. He knows he is seen. I smile and reply softly, “He sure did, honey. He sure did.”

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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 8-­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.

Letting Go On the First Day of School

This is the photo Henry chose for his first day of 1st grade. Goofy smile. Not looking at the camera. Next to a freshly painted fire hydrant.

It’s not what my instincts would choose. I’d have him sitting on the front porch with his hair parted just right. His smile would look effortless. He wouldn’t wear socks with his sandals.

But he’s never been a “sit on the front porch on the first day” kind of guy. He’s got too much going on in his head to put up with my nonsense.

Some forms of letting go are easier than others. Letting him choose his first day picture pose – or not pose for one at all – has been an easy one.

Others are difficult. I know this; you know this. Trusting God with our children isn’t easy, despite the fact we know he is for us, we know he loves us, we know he loves our children.  Why is it difficult?

I think we hold tightly to our children because, in some measure, trusting God means trusting other people.

Trusting teachers and assistants and principals will have the students’ best interests in mind.

Trusting other children to be kind.

Trusting our children to live with integrity.

Trusting we’ve done our part to raise them well. (Maybe trusting ourselves is the hardest?)

Even for those of us who trust others automatically, this is hard stuff. We value nothing more than our children. Handing them over is more weighty than a truckload of gold bricks with diamonds spilling over the top. So, we may watch them climb the bus steps or walk through the school doors with some reluctance, wistfulness, and questions.

That was me on Henry’s first day of 3-year-old preschool. 4-year-old. 5-year-old. Kindergarten. Only on the first day of first grade did I relax.

Over time, through challenges and even failures, we see God’s goodness displayed in our own lives –  not just played out page after page in our Bibles, which should be enough for us but somehow never is. We’re imperfect humans with spiritual amnesia, after all. But if we live long enough, we do learn. We learn it’s ok to trust. It’s ok to give others responsibility. We really can let our children go. Trusting God completely means realizing he will fill in the gaps and redeem the mistakes.

I know from experience now that things will go more smoothly than I can imagine, but God will be with Henry even when things go badly. I don’t have to be afraid of the what-ifs. I let him go with this prayer:

God, I know you will meet all Henry’s needs according to your glorious riches in Christ Jesus.

In a few weeks Henry will start second grade, and I will snap a photo in the way he chooses. I treasure our first day pictures more than any staged picture we’ve ever taken. In the sweet little back of a toddler, in the smiling eyes of his compassionate teachers, and in the big boy’s smirks and toothy grins, I see the mercies that are new every morning.

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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 8-­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.

Remembering and relearning the lessons I ought to know

Jesus’ rhythm of work and rest was the centerpiece of our church retreat day, capping off a beautiful Lenten season focused on Sabbath. I understood this rhythm. I lived this rhythm. More importantly, I knew the dangers of not living this rhythm. I had 5 minutes to speak, and I knew exactly what I would say.

Yet, as I shared from the podium the story God had laid on my heart, I felt him nudging me.

It can happen again, Meredith. Pay attention. Be careful.

I thought I was healed, whole, and rested, but I still had so much to learn. Several months later I would drive myself to a small inn to spend 24 hours alone. Just me and Jesus.

What I learn, I must relearn. What I teach others, I must reteach myself.

I am not complete. God is not done with me. Even this, I am always relearning.

*****

I feel the nudge again, as if I’m standing in a room full of people with 5 minutes to speak. This time I’m not testifying to the power of Sabbath rest. I’m sharing with you about surrender and trust, and I’m hearing God say it.

Pay attention. Be careful.

But where I am veering off course? My brain plays its movie reel. I watch the days and months roll by, and then I see it:

I live open-handed, releasing my expectations . . . except when I don’t.

When I forget God is always for me, always with me, always 1000 steps ahead of me, that’s when I stumble. My open hands curl into controlling, clenching fists. I wrestle circumstances into what I think they should be. I hurry and scurry and overthink. I listen to more podcasts, watch more webinars, consult more experts, read more articles. If I just consume more, I’ll get it right this time.

(More information leads to better choices, right?)

Sometimes the better choice is to be still. Look. Listen. Remember.

Remember that God doesn’t change. Remember the time he was working for my good, even though I couldn’t see it. Remember the time I thought I knew it all, but later saw the bigger picture.

I want loose strings tied in a tight knot. I want clear direction and a sure path laid before me. I want circumstances to change. I want to know why my soul stirs without understanding where I’m going.

He whispers.

Why are you struggling to understand this on your own? Lean not on your own understanding.

He has proven his love and provision over and over again. Why do I forget? 

Maybe you want answers more than you want me.

I want to know him more than I want anything else, but I am so weak. If I avert my eyes from my Savior for even a moment, even without awareness, my fists curl into false control once again. I do what I don’t want to do.

Thank God, then, for those whispers. 

Abide in me.
My yoke is easy.
Rest.

Answers don’t always come, and they almost never come quickly, but God is still good – he has always been good – and I can trust him with my questions. I can rest in his presence while I wait.

So, I uncurl my fingers and relearn the lesson.

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 8-­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’s not on the same timetable, but he’s growing too.

Because the days of acute stress are over, I can be lulled into thinking we’re a typical family. I can forget Henry’s brain is different than most. I can think we’ve got life under control.
 
(Psst. Control is an illusion.)
 
I forget he needs preparation.
 
I forget he needs a schedule.
 
I dropped him off at a friend’s house and forgot to tell the mom he needed a warning before pick-up time. Let’s just say pick-up wasn’t pleasant.
 
I bought tickets to a baseball game without asking him. He lost his mind with anxiety. I felt like a terrible mother. We didn’t go.
 

I have to stay awake, to remember he is different. Most of the time, however, this isn’t my problem.

I also have to remember he’s a typical boy.

My sister reminded me of this last week, as I watched Henry plunge into the wave pool at an amusement park, staying close to his uncle but smiling all the way. Yes, he was wearing the required life vest, but I know even a life vest wouldn’t have made this happen last year. I can’t believe the difference a year makes.

This year I’m seeing him show more self-restraint.

This summer I’m watching him lose his fear of swimming.

Next week he’s attending his first day camp.

My cautious, anxious boy is growing up.

While we can never grow lax in advocating for his needs, we must remember this: His needs include growth.  In fact, his special needs actually make it more imperative that I focus on this growth.

In the school setting, we know special kiddos are entitled to FAPE – free and appropriate public education. Education should prepare all children for further education, employment, and independent living, right?

So, I have to ask myself what we are doing at home to give Henry the same preparation. Am I nurturing his physical, academic, emotional, and spiritual growth? Am I teaching him responsibility and independence?

Just yesterday I caught myself putting crackers in a bowl for him, even though I instituted the summer snack basket last month. (He’s allowed to grab his own snacks out of the basket, but when it’s empty he is done for the day.) How quickly I can lapse back into old habits.

There were wins, too. He fed the dog without being told. He asked to play outside without my prompting. He handled disappointment with integrity. Yes, I am proud of him. But I can’t grow lazy, because tomorrow will come. Tomorrows turn into years.  He will be 8 on Sunday.

Eight years. Almost 3000 days. What have I done with them?

The hardest days may be behind us, but the parenting is not. God willing, we have many more days to go. God willing, Henry has many more years ahead of him. I pray we will prepare him well.

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 8-­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.