parenting outside the box Archives - Journeying Outside My Box

Preparing to Let Them Go . . . and being okay with that

July 2, 2024 By Rebekah 2

I’m realizing more and more each day, that my children are growing up. This summer, especially, we’re realizing that all of our parenting efforts are leading to times like this - where we’re preparing to let them go. While that is a good and right goal, it hit me recently that I need to be okay with opportunities to let them go, and let them begin to spread their wings while still in the safety of our family.

let them go

I’ve been thinking a lot about all of this as a week of church camp for each of our boys has been on the calendar. Our older son went away last year, called us once or twice, and I was nervous the whole time. This year, as he prepared to go again, we had a lot of good conversations about the right things to do, the way to behave, interaction with friends and leaders, and I realized that he loves this opportunity for time away, to learn and grow. And so I’m not worrying too much that he isn’t calling home this week. I know he’s having a great time!

cornfield But then, there’s this guy - see that face? I know - I can hardly see it either. We have spent the 9 years since he was born, trying to help him in one way or another. From early feeding issues, to a then-unknown speech and language problem, to wondering if he could actually hear or not, to countless nights where he couldn’t (or sometimes, wouldn’t) sleep - we have been there.

We’ve chased him into and out of water, we’ve taken unsafe things out of his hands and put safe things into his hands. We’ve followed him up and down mountains. We’ve cleaned up Sharpie off the walls, and then went and hid all those markers. Until we gave them back and let him create masterpieces in appropriate ways. We’ve been through meltdowns and put life on hold. We’ve gone from being loved one minute, to extremely disliked in the next. We’ve tweaked all areas of life in an effort to make sure he was safe and could function within it. We’ve endured sleepless nights, sleepless days, and then pushed repeat on that cycle for days on end. We’ve visited places before appointments, in order to make sure he knew he’d be safe there. We’ve practiced what to do, when to do it, and how to be sure we could cope. We’ve gently corralled the occasional sleep-walker. We’ve arrived late, left early, changed plans at the last minute when he couldn’t cope, and endured the stress of all of that. We’ve lost friends, gained love and support from places we didn’t even know to look, and watched in awe as things finally started to come together.

In all of this, I’ve had a lot to do - chasing, corralling, feeding, not sleeping, sleeping, holding, hiding, providing, nurturing, waiting, gently pushing, searching, re-thinking, planning, preparing. Next week he goes away for 5 days and 4 nights. Without us.

All of his life - everything that we’ve done - has been in preparation to let him go.

While Tim and I were talking about it the other night, I spent a few minutes with my fears:

*What if he isn’t understood?
*I’m really sending him away to a place he’s never been?
*What if he doesn’t eat enough?
*What if he doesn’t sleep enough?
*What if he has a massive meltdown?
*What if he is wildly successful? (Yes, I even thought about that, too.)
*Will they take good enough care of him?
*Will he remember anything we’ve tried to teach him? (Be kind, use your words, brush your teeth.)

But then there was the big one - and I didn’t even realize it was in there.
While we’re preparing to let them go,
I have to be okay with it when they do go.

What am I going to do while he’s gone? For his 9 years, my daily existence has been wrapped up in keeping him safe, in making sure he’s understood and that he can cope in his surroundings.

family - smaller This also makes me incredibly thankful that our other two kids understand their brother, and his needs, so well. They are such a support to him and they understand, to some extent, the amount of time and effort required to help him make it through a day. They are his best advocates and champions! God really put together an amazing group of siblings with these three!

Maybe you wonder why I’m letting him go, if all of life has been like this? That’s a very fair question, because I’ve thought about that, too. We could just keep him home, plan other fun activities to “take the place” of camp. But here’s why we’re letting him go - and why I’m trying to be okay with that:

*Most of the way we’ve raised him has been framed with, “for when you can do this on your own someday.”
*He will only be 1 hour away from home.
*He really wants to go & a lot of his friends will be there (and no, not all of his friends know of his issues, but he is comfortable with them).
*The leaders who are going really try to know and understand who he is, how he functions, and how they can best support him.
*I talked with someone at the camp who listened to my concerns and answered in ways that let me know he will be well cared for.
*He heard there will be archery there and really wants to try it out (and for the perfectionist that he is, that could be a great option for an activity!)
*But really - because I have to start somewhere with letting him spread his wings.

from meltdown to breakthrough || rebekahmhallberg.com And so I started to gather his clothes for camp yesterday. We talked about outfits, getting his clothes back into the bag at the end of the day, how to decide what to wear on his feet, to put on a sweatshirt if he was chilly, that all his clothes and items will be labeled.

And I will pack his things later this week, and I will probably write him notes and tuck them into his Bible, and in his pillow, and inside his sneakers. And God and I will spend a lot of time together as I wait on Him through the week, because I’m preparing to let them go - and I have to be okay with it when they do go!

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Filed Under: authenticity, autism spectrum diagnosis, dealing with feelings, family focused, finding peace, having faith in God, parenting, parenting outside the box, summer fun

In Order to Always Remember

May 21, 2024 By Rebekah 2

Since switching to the new blog, I haven’t written as much about my son’s special needs. Recently, though, something very interesting has happened, and this post is mostly a way for me to continue to process through this, in order to always remember.

Lately, as we’ve been talking to him, trying to help him remember what he’s supposed to do next, he will turn to us and say, “I have short-term memory.” What he actually means, although he may not know it, is that he has short-term memory issues. I think that he feels like he can only remember things for a short time, and so he thinks he has short-term memory. However, in a year from now, he will be able to remember what we do or where we go, but he has trouble with immediate, or short-term recall of conversations, trips, things we’ve seen and done.

I was impressed that he knew to say that he had short-term memory (issues). I’ve told him that some of his therapies would help him work on his struggle to remember things, but to the best of my knowledge, I never said, “You have short-term memory issues.” I wonder if a therapist said that to him, which would be a very natural thing to do with our guy. He’s very smart and so sometimes the only way to get him to comply with an activity is to appeal to his intellect: to tell him what you’re wanting him to do, and why.

But I almost missed the most important part. I was so amazed by his words and his ability to understand all that, and I almost missed the give-away. I was so proud of his self-realization, despite the struggles that come with it, that I almost overlooked what he was telling me without words.

His eyes showed the fear, sadness and disappointment. It was as though he thought he was losing some of his ability to remember.

And as I talked through some of this with one of his therapists, almost 5 years of “clues” began to make sense.

Five years ago, he started with some tics – the pediatrician calls them benign tics of childhood. When he saw something that he was interested in, he would vigorously nod his head, one time, and blink his eyes, one time. Every time I asked him about it, he told me he was taking a picture of whatever it was. I asked him if he could remember what it was without “taking a picture” of it.

“No,” he replied, each and every time.

These picture-taking tics progressed to a level where he was starting to have a sore neck, pretty awful headaches, and would feel dizzy. Our favorite pediatrician suggested that we try to change his tic, to focus on fixing his health issues, but to allow him to continue “snapping pictures” as needed.

From the picture-snapping with the head, we moved to finger-pointing. He would flick his index finger in the same manner – one quick flick of the finger – while blinking his eyes, thus helping himself to remember what he had seen. Those tics lasted most of that summer.

Since then, we have focused long and hard on sequencing – first, next, then, last – trying to help him organize and structure his actions and activities. We’ve never really arrived at success, at least, not success the success that we were looking for (ability to successfully sequence his activities and actions).

In addition, he began taking something from everywhere we went – sometimes a slip of paper, sometimes a receipt, sometimes a free bookmark or sales flyer – always something that he was allowed to have. This was the “next level” of his picture-taking, I think. He learned that the picture-taking wasn’t going to work for him, due to the extreme discomfort it caused him.

However, I didn’t realize that his “stuff-taking” was a part of this. I thought he just wanted something, so that he could have it. I feared we were looking at hoarding issues. But he always took things, and he always talked about what had happened at that place when he pulled out the paper/item he had taken.

All these years, though, he didn’t have the words to explain to me just how intense his memory struggles were. I know that, on some level, he realizes he struggles. But he’s really only recently started taking ownership of some of his struggles, and most of those are ones that he knows he can work on independently (at least, to some extent).

But his memory? I know this is different for him. I know because of that look in his eyes – the look that can’t hide his fear that maybe this issue is pretty serious and cause for fear.

And so we work. We admit our own forgetfulness. We talk about how it is all coming together – how things he couldn’t do last year, he can now do this year, and that maybe with some more work, in another year, the memory issues will be behind him. And we reinforce what we can, as it relates to memory, in the most loving and kind way we can.

We remind him that he’s so much more than all the issues that he’s working through right now. He’s full of love, humor, art, kindness, joy, funny mischief, and now that he knows that the memory is a struggle, he knows how to handle it – like everything else with which he struggles, he can always ask for help.

Five years later, and everything that has happened in the past few years is all making sense. He knows he struggles with his memory, and it’s now our job to work through that with him. We’ll keep figuring out ways to improve that memory, we’ll give him techniques that he can use when he struggles.

Remember – our kids are just that: children. Whatever is happening inside their minds and bodies that they aren’t able to express must seem so scary at times. It’s our job to take away the fear and to help them understand that they are okay, and that we will help them in the areas where they struggle.

Armed with this new knowledge that he understands himself, we will keep working with him - in order to always remember.

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Filed Under: anxiety and autism, autism spectrum diagnosis, parenting outside the box, special needs family, special needs therapy

How To (Maybe) Successfully Get Your Child’s Hair Cut

February 16, 2025 By Rebekah 2

Do you have a child (or know a child) with sensory issues? Then you likely know the frustration that can come when it’s time for a haircut. The fear associated with scissors, the buzzing of the clippers that seem to hurt or are too loud for the ears, the touching of the head and ears - all of these factors (and more!) can make the seemingly-simple act of getting a haircut seem like more of an act of torture. We have struck out so many times when taking our guy to get a haircut. I want to share, though, how to (maybe) successfully get your child’s hair cut.

For a time, I would just buzz it down to almost-nothingness just to get it off his head quickly. As he got older, he disliked that option more and more. We had tried many different places where we could just drop in, without an appointment, in hopes that if we happened into the shop during a good moment, he might actually do okay with getting the cut. He did not.

In a little town nearby, there are a large number of barber shops. One of the shops is right beside a little ice cream place where we sometimes stop for a cool treat on a hot day. So when we would get ice cream, we’d point it out and “talk up” the idea of getting a haircut.

One day we decided to try this barber for our son with sensory issues (after many times of talking it up). This particular barber shop is a family-run business, and so the day we ventured in, our son got Grandpa barber when it was time for his haircut. What happened next may be one of the most interesting things I’ve seen. You know when you take a child to get their hair cut, they often get a lollipop when they are finished? Well, Grandpa barber had his own unique twist on this whole ritual.

Picasso climbed up in the chair and seemed squirmy. Grandpa barber tried asking him to sit still a couple times, with little success. Right beside his barber chair is the container with all the lollipops. Grandpa barber reached over and pulled one out. He took the wrapper off and offered it to my son, who willingly took it - WHILE he was getting his hair cut. He kept it in his mouth, sucked on it, and kept his mouth closed. This worked for a few minutes and then he started to get squirmy again. I started to worry, thinking what a great idea that had been, and feeling sorry that my son was being antsy.

Grandpa barber wasn’t bothered in the least, though. He grabbed a second lollipop out of the container, unwrapped it and offered it to my son. I was amazed! My son was thrilled with the prospect of another lollipop and gladly nodded his approval. Grandpa barber gently took Lollipop #1 and threw it away, and gave Picasso Lollipop #2 which he happily kept in his mouth - keeping his mouth shut, and preventing hair from getting in his mouth.

Meanwhile, Grandpa barber was snipping hair as fast as he could, while Picasso was on cloud nine, having had TWO lollipops now! Things were going well for a few minutes, till my guy started squirming again. Sigh. But to a seasoned barber, like Grandpa barber, this was just another opportunity to pause, give my guy a minute to stretch, AND to give him Lollipop #3, trading it for Lollipop #2 which had served it’s purpose of 5 minutes of distraction while he’d cut some hair.

Me? I was sitting in one of the chairs watching all of this, in amazement! WHO KNEW that there was a trick like this that maybe, just maybe, would keep my son IN THE SEAT long enough to get a haircut?! With the successful consumption of Lollipop #3, the haircut was finished.

As if that wasn’t enough, Picasso went home with 3 lollipops, from Grandpa barber, for “being such a good boy”. Six lollipops for one successful haircut - worth every penny we paid that day!

Do you have a sensory kiddo getting a haircut? This trick with the lollipops would be a great thing to try.

*Arm yourself with several lollipops (or favorite hard candy of your choice)

*Explain what you’re going to do, to the person giving the haircut - don’t let them talk you out of it by saying, “Oh, they’ll get one at the end”. Haircuts can be hard enough without added frustration from someone who doesn’t know your child.

*A good rule of thumb - a new lollipop every time the child starts to get fidgety (and a different flavor than what was last in their mouth). For our guy, this was one every 5 minutes.

*And 1 more (or 3, if you’re feeling generous like Grandpa barber) for when the haircut is done.

Why this works so well - kids suck on the lollipop with their mouth closed most of the time. They try to keep the lollipop in their mouth which prevents the stickiness from getting all over the child. The person cutting the hair can wipe away stray pieces that fall on/near the face to prevent them getting stuck on the lollipop. It’s enough of a diversion that it seems to help with some of the anxiety and stress that usually goes along with a haircut.

Hopefully this will help someone else! Special thanks to Grandpa barber at the Ambler Barber Shop, Ambler, PA.

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Filed Under: anxiety and autism, parenting outside the box, sensory issues, small town usa

Our Normal - We Social Story

October 28, 2024 By Rebekah 1

In our little corner of the world, I sometimes find myself craving some normalcy. Some parts of life seem so far from normal anymore, that I almost forget what “normal” is supposed to look like. I’ve gotten used to “our normal”.

Our daughter got invited to her very first friend sleepover party. She was beyond excited! So was I - that’s what “normal” is supposed to look like…kids playing with friends, having slumber parties, sleeping bags, all without Tim or me having to hover over the situation. Our girl was so excited to go! We did some planning, I made sure she felt ready to go, and then it was the big day.

And that’s when I noticed that even though we were headed off to something “normal”, we still carried “our normal” with us. See, my girl was going through all the checkpoints. It was good until I realized it was more like a social story than a checklist of things that need to be done before leaving.

In my mind, going through the checklist to prepare for an outing would be something like:
*I have my sleeping bag, pajamas, toothbrush and clothes.
*I know your phone number.
*I know I can ask for help.

But “our normal”, where we social story (because I wanted to turn that into a verb!), and which was the checklist she was going through, sounded more like:
*I’m getting ready for a slumber party.
*Sometimes you might feel happy because your friends are there.
*Sometimes you might feel scared if someone tells a scary story.
*If I feel scared, I’m going to ask Miss L for some help.
*At a slumber party you will sleep in your sleeping bag. I love my new sleeping bag!
*Sometimes you might get scared in the night. If I get scared, I will ask to call my mom.
*When I wake up in the morning, I will eat breakfast and get my things packed.
*My mom or dad will come pick me up.

Her version of a social story wasn’t a bad list to help prepare herself. But it reminded me that it wasn’t completely “typical” either. But I think that’s okay - ultimately she seems to know enough about the social story process and can help her brother prepare for a new situation if she needs to. In our house, we sometimes social story. And that’s “our normal”.

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Filed Under: family focused, parenting outside the box, social skills

Wordless Wednesday / Self-Expression

October 19, 2024 By Rebekah 4

A picture of my guy. The mohawk was a great exercise in his self-expression.

Then, my wonderful friend, who has a great relationship with our guy, suggested some spray-on color, and he was intrigued. She purchased some for him and he was so excited to be sporting the red tonight!

For me, this is a BIG step “outside the box” and I’m finding that I really love it.

I don’t have that same “eye-twitching” that I used to, when I tried to live outside the box.

I think it’s finally sinking in for me!

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Filed Under: parenting outside the box, self-expression

The Joy of Imperfection

October 9, 2024 By Rebekah 3

One of the issues we deal with in Picasso’s Asperger Syndrome is the need for perfection. He is eight years old, and looking back, I can see time after time where he’s done his work perfectly. If he couldn’t do it perfectly, he would often just not do it. If he couldn’t get it perfect when he was trying to do it, he would often scribble on it, or rip a paper, or crumple something up (or ruin it in some other way) and throw it away.

Getting him to do the writing for anything was like pulling teeth. Often, if I pushed, even for a couple sentences, it would require so much from him, that he would be done for the day. A few days ago, I posted this on the blog Facebook page:

This morning Picasso did a very short writing assignment, almost completely on his own, without much prompting or pushing from me. HUGE win! Huge, huge, huge! He did a great job and I was so proud! And apparently, that was the end of his school day. He’s retreated to his room and is trying to regroup from the stress. I guess I should focus on the success and realize that on some other day, he’ll fly through so much work that it won’t matter that we only got a little bit done today.

This morning there was another writing assignment - this curriculum is heavy in the writing, a frustration for my guy, but something we continue to work on. The assignment was to write a short paragraph based on a list he had previously put together. (Seriously - if Middle School Math doesn’t kill me, 3rd grade writing might!) He chose to write a paragraph on things he likes to do outside.

He immediately asked if I would write it. Nope. A lot of times I will help him, particularly because the entire curriculum (not just Language Arts, but the whole curriculum) is heavy on writing. I asked him to please try his best. I encouraged him not to worry about spelling - it’s a rough draft so we will edit and make any spelling corrections in another lesson. You can’t tell from this picture, since I blotted out the names, but he didn’t even spell his sister’s name correctly. He was so focused on writing and trying to get that done, that he didn’t even worry about the last letter in her name.

He wrote the first sentence. He asked for help in the mechanics of wording the second sentence. I tried to suggest an easy way so he wouldn’t have to rewrite names, and so he could do as little writing as possible. I also encouraged him to remember that this is just the rough draft. Spelling does not count; I was more concerned that he get his ideas on paper.

He didn’t protest the writing today. We worked together to turn the page down so he could refer back to his list even more easily. And he wrote, and wrote, and wrote. The spelling is a mess, despite the fact that he knows how to spell every word he wrote today. (In fact, I almost wonder if he actually tried to spell some of the words incorrectly because they’re misspelled so badly!) While it seems like an unwinding of all his Spelling skills, it’s not. In fact, quite the opposite - it’s a huge ramp up in his writing skills. The spelling will still be there long after he’s figured out how to put a paper together. That’s the easy part for him.

So we’re ecstatic today - for the first time, he got through a whole paragraph and didn’t complain, protest or have a problem with the imperfections of the finished product. And with someone who is so focused on perfection, this is a big success!

So, without further ado, here’s Picasso’s rough draft on things he likes to do outside.

I like to play frisbee with (brother), (sister) & daddy. I also like playing dodgeball with them.
I like going on the Green Ribbon Trail and I like to look for animals on it.

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Filed Under: autism spectrum diagnosis, daily blessings, homeschool family, parenting outside the box

Preparing to Let Them Go . . . and being okay with that

In Order to Always Remember

How To (Maybe) Successfully Get Your Child’s Hair Cut

Wordless Wednesday / Self-Expression

The Joy of Imperfection

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Preparing to Let Them Go . . . and being okay with that

In Order to Always Remember

How To (Maybe) Successfully Get Your Child’s Hair Cut

Our Normal - We Social Story

Wordless Wednesday / Self-Expression

The Joy of Imperfection

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