Tag: ADHD

Learning to let go…just a little

This summer was the first time our youngest boy would be attending summer camp.  In previous years, he’d had summer school at his preschool, and continued his work with a speech therapist, an OT, and a PT.  There were two weeks off before summer school and two weeks off at the end before the regular school year resumed.

This year was different, for although he qualified for summer services, they would be half days and I was not sure how meaningful that would be for him.  With great trepidation, I declined the summer services (because we’re taught to protect any and all services as though our lives depended on it) and sent my baby to summer camp.

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The boys on their first day of camp

This was not just any camp, it was a camp specifically for kids with a diagnosis and/or mental health needs or developmental needs.  It’s a small group of kids and a lot of incredibly talented and patient (and well trained!) counselors who would come together every day for six weeks and share in their common experiences.

It was a camp where my kids weren’t the “odd man out”.  They got to be…kids.  They got to feel normal.  They felt supported.
This has not always been the case, and our previous two years at another camp (for Speedy) showed that not every camp is able to handle special needs.

During the last week of camp, they took a special trip to a waterpark.  Two. Hours. Away.
I put my babies on a charter bus and as I drove to work I cried.
The first of my coworkers to ask me how I was doing was met with sobs.  Because apparently I was really not at all prepared for putting a 5 year-old and a 7 year-old on a bus for a two hour drive which would surely result in their total destruction (or so I was convinced).

(Hint: they were fine, really)

I have a tendency to think of all of the possible Worst Case Scenarios when faced with The Great Unknown. I run these scenes in my head regardless of level of absurdity, and I play them all to completion as though they were part of a movie I’d just seen.

Here’s the result of that trip:

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One VERY tired boy

Did I need to worry?  No, of course not.  While it’s true that incidents do happen, it’s also true that the staff at the park and the staff at his camp know what they’re doing.

The lesson in all of this is that I needed to let go a little, if for no other reason than my own sanity.  This is an important and difficult lesson for a control enthusiast such as myself, and I’m still learning.

What does one do when faced with the knowledge that maybe they’re holding on a little too tightly to their children?
Put down the bubble wrap, Susan*. You absolutely cannot protect your children from the entire world.  You need to let them experience the falls and scrapes and the terrifying moments.  You need to arm them with the knowledge that stuff happens, and that they have the ability to face the stuff when it all goes down.
Because here it is, in a nutshell: if you surround them and helicopter them you may be temporarily making yourself feel better (assuming you have not yet realized the extent to which you’re making yourself a wee bit crazy) but YOU ARE NOT HELPING THEM.  Like Speedy says, “Be like Elsa and let it go!”

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Forgive me, I nicked it off Pinterest.

*There is no Susan.  Or if there is, she doesn’t have bubble wrap.

Respite time!

Respite time!

As my husband and I teeter on the brink of our annual respite weekend, the tension is palpable.  Not between us as much as between me and our kids.  Okay, between us too.

As much as our neurotypical parenting counterparts can empathize with what our daily life is like, they haven’t lived it and often I feel like they’re watching me and scratching their heads in confusion over why I am the way I am.  I cancel plans. I’m tired. I say weird things.  I drink coffee every day and wine every night.  I talk about autism a LOT.  But in all fairness, it’s kind of my entire existence.

Once a year, we take a break for two nights.  Last year that meant our first chance to sleep without having WonderBoy sleep in our bed with us.  This year it means a chance to not spend every waking moment wrangling a child who cannot seem to control his body.  It means not having to redirect him ten times just to get him to the bathroom.  It means we can breathe for two days and not have someone yammering non-stop about I don’t even know what.

I can’t pretend that this is fun.

I can’t even pretend that I’m any good at this.

While we didn’t feel certain at first with Wonder Boy, I feel utterly thrown for a loop with Speedy.  The anxiety I understand because I live with it every single day.  But the ADHD?  HOLY COW it’s utter chaos.  And I’m tired.

Thankfully we live where we do, and there is an organization that supports parents by providing one respite weekend per year.  I cannot wait to spend our time reconnecting and meeting other couples who live our life.

Yes, it is possible to go on vacation

Yes, it is possible to go on vacation

Ah, summer vacation.  The words elicit memories of running through sprinklers in the backyard, sitting with friends on the steps while you eat popsicles until your fingers are sticky, and late nights catching fireflies.

<screeching tires sound>

Not in this house.
In this house, summer vacation means a halt to all special ed services, early bed times, extra melatonin doses on wild days, and keeping fingers crossed that we all survive it.  It means higher anxiety levels because the routine is broken.  It means cajoling the kids into trying things like swimming.  It means that at this very moment, two wild children are yelling about bananas and Sasquatch while I attempt to focus on what I’m saying… what was I talking about?  Oh, yes.  Summer vacation.

Three years ago was the last time we had taken a trip somewhere, because frankly traveling with kids on the spectrum is my personal version of hell.  It means ripping the kids out of everything they know and hoping that they don’t totally fall apart.

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The photo above was from our last vacation to South Carolina.  We drove for two days to get there, and that alone was pretty challenging.  Being stuck in a hotel room with kids who are completely out of their element is a special kind of difficult.  But both kids were still in diapers (so there’s that- fewer potty breaks on the road trip) and they both still rode in a stroller so we could keep them secure.

Fast-forward to this year, and we decided it was time to take another trip.  Frankly, my husband and I were getting a little zany and really needed some down time.  So I hopped onto my favorite travel site to look for a cottage to rent.  The plan was stay close enough to home to be able to easily manage potential meltdowns, while being far enough away to feel really AWAY.

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Oh yeah, baby… this.  So very much this.

I found us a place on the lake, about an hour from home. Easy-peasy.  It was within budget, could accommodate our entire family (including my mom), and we could relax and do the fishing that Speedy has been asking to do.

Within minutes of our arrival, Wonder Boy was nervous.  “We’re not staying forever, right?” “No, honey, we’re staying one week.” “But we’re not staying forever, right??”

This went on until the next day, when the questions steadily increased.  Fortunately, I needed to head home to grab items that we’d forgotten, so when I was there I grabbed all of his plastic sea creatures and insects (the more realistic looking, the better) and dumped them into his backpack.  I added his beloved National Geographic for Kids magazines and when I got back I presented him with his treasures.  He sat on a towel in the yard and proceeded to script one of his nature documentaries for the next hour.

The lesson here was clear: a piece of home (or several dozen, in this case) really makes all the difference when you’re traveling with kids of any abilities, but especially kids on the spectrum.  It’s all about the routine, the familiarity, and when you take all of it away it can be scary!

And then, something truly beautiful and magical happened:

They fished.

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And fished.

And fished some more.

Speedy sat still.

Let me repeat that.

Speedy. Sat. STILL.

I am still completely taken aback by this, because while I know that combined-type ADHD includes hyperfocus, we’d not yet seen true hyperfocus in him until the vacation.  Until the fishing.  And then… well, it was just about the best gift we could have given him and ourselves.  The gift of hope.

This showed me that yet again, I was entirely focused on getting WonderBoy through the process of a vacation, and had not thought about what it could mean for Speedy.
And I can’t forget the Teens.  They spent the week relaxing, drawing, photographing, and appearing to grow closer to each other.  This brought me great joy, particularly as my first baby, my oldest son, prepares to completely break out on his own.  He’s been at college for a year, and spends each summer working at a camp.  To say that we seldom see him would be an understatement.  I hope that he knows how much I cherish the fact that he could join us on this trip.

This post is starting to look like I just wanted to share all my photos.

The truth is, I do.  Why?  Because this trip was so much more than simply a week away from our daily lives. It was a chance to reconnect, to find ourselves, to find promises of what can be. This trip helped me find…me.

 

Quieting the anxious mind

Quieting the anxious mind

It’s 5am. Speedy is up and out of bed a full 30 minutes before his alarm clock will beep.
Wonder Boy is still asleep, having recently started sleeping in his own bed after 5 long years of sleeping in our bed.

Before we move forward, I’d like to take this moment to talk about the co-sleeping thing. There are many schools of thought here, ranging from “Oh my word, I’d never do that” to “yes, my daughter/son has been sleeping in my bed for 10 years”. When we asked Wonder Boy’s specialists what they thought of this situation, they responded with this nugget of wisdom: “Only you can decide what you’re comfortable with.”

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I look really comfortable, don’t I?  The truth is, I love moments like this one, but it’s not comfortable when you’re actually trying to get sleep for yourself.
Now, while it may be true that only we can decide what we’re comfortable with, the advice didn’t exactly solve our problem. Namely, my husband and I were sharing our bed with a child who is the human equivalent of a Staffordshire terrier in terms of body type (short, squat, with a really big head) and ability to slam into a person with unmatched force. SUPERFUN.

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Just when we thought we’d never get our bed back, and had begun drawing up plans to fill our entire room with one giant mattress*, I tried putting him to bed one hour later. We’d been down this road before, with no success. I wasn’t convinced it would have any impact at all.

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*No, we’re not building a giant bed, but doesn’t this look comfy? 

BAZINGA! We have sleep! For one blessed week, he’s been sleeping in his own bed. Now, he still gets up at odd hours and tries to climb into our bed, but we’ve been able to successfully redirect him back to his bed. WOW. [insert angelic choir sounds here]

Okay, back to my original story. Where was I? Oh yes- it is 5am and Speedy is wide awake. He’s standing in his room in the dark singing his new favorite tune: Watch Me (Whip/Nae Nae)

Then he launches into the song he learned in school about human rights. Which he sang in a muppet voice. At full volume. In the dark.

This is the way his brain seems to work. On Planet Speedy, there are limitless distractions and “ooh, SHINY!” Moments. There are songs to be sung, dances to be danced, jokes to be told. Only for him, they need to all happen ALLATONCE.

Knowing how his brain is working, the next question is how to quiet the anxiety and the constant internal impulses that are hitting him from all sides.
Some of the worries that his heart carries right now include being a total failure (at 7) and being afraid of heights because some day when he’s an astronaut he’s going to get shot out of his rocket by a slow-moving missile, and that’s why he never wants to fly in a plane…
Yet this same boy cannot understand why it’s not safe to tell strangers your address, or to walk up to someone on the street and try to take their dog’s leash from their hands.

One thing that we are able to do for Speedy to help with his anxiety is to set him up for successes. This weekend he ran in his first race- a 1-mile fun run for our local summer festival. The pride he felt from that moment was visible, and he needed a tally mark in the “win” column.

The next day was his baseball game, and he was able to accomplish his first base hit and an RBI! My husband, who is one of the coaches, actually jumped for joy, and it was the smile on his face that was medicinal for me.

Everyone on the team congratulated him, and he’s still talking about it this morning.


These seemingly small things are not small in any way for a kid who is so full of anxiety. These moments in life are the ones which will remind him that he is able to do anything he sets his mind to do, and we will continue to provide him with these opportunities.

A new diagnosis

Two days ago, we made the two-hour drive to see the specialists who gave us our youngest son’s diagnosis four years ago.
This time, we were going to see if we could get to a more definitive diagnosis for Speedy, because while we felt like we were standing in the right forest, we definitely were not barking up the right tree… it didn’t seem enough to simply classify it as combined-type ADHD, and we’ve gotten nowhere with medications so far.

The psychologist who saw him a few months ago agreed, and at that first appointment he couldn’t even get through the evaluations with Speedy.  He is just so… speedy.  This time we took a different approach, with me listing off all of the long-term behaviors and sensory needs, social skills needs and anything else that might fit the bill.

After a half hour of working with Speedy, they emerged and he told me that he absolutely felt comfortable expanding his diagnosis to included autism spectrum disorder. Speedy felt it important to interject, “the numbers on the clock are WRONG.  They are not first grade numbers at all.  You need to change them…I’m watching you….”.

​After a moment to hide a smile, the doctor did say that if we were working with the DSM-IV, he’d receive a diagnosis of Asperger’s Syndrome, however that is now all lumped in with ASD under the new criteria.

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Occasionally it washes over me that something that was never even on our radar five years ago now utterly consumes us. This life we live, it’s not for the faint of heart. It’s not what we expected at all, and yet here we are. Day after day, tirelessly advocating not just for our children but for all children and adults with disabilities. And you know what? While I clearly wouldn’t trade it for anything, I’m so so tired.

When our children are their advocates

When our children are their advocates

Seeing our children advocate for themselves is the goal of many parents. We teach them the rules of living in the social world and we teach them to question that which they do not understand.

The method to getting there is a little more labor-intensive with children on the autism spectrum and/or with ADHD. My husband and I often talk about taking the “scenic route” to get to these goals, as we often have to navigate our children’s various challenges along the way.

For neurotypical children, it starts early. From the first time that your toddler tells you “no!” they are well on their way to understanding self-advocacy.

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(Image shows a young boy looking out a window)

This sometimes can take a year or even two years longer for some children, and may never happen for others- not in a standard way, that is.

Behavior is communication

Remember this phrase- it will get you through the tough moments, I hope.  Behavior is the communication of need, my mother tells me after a lifetime of working with children and families in crisis.  This is absolutely true, and the behaviors we see don’t always translate in a very obvious way.  This is to say, when you see your child jumping on the couch all the time, this doesn’t always mean that they want to jump, but they are trying to communicate something…

But what??

If behavior is the communication of need, then the next step is determining what they are telling you through their behavior.  A person with a sensory processing disorder has a need for certain types of movement and sensory input, and there isn’t just one type of thing that will fulfill that need.

(You may hear an occupational therapist refer to proprioceptive and vestibular input.  These are connected to how we perceive our body’s position based on movement.  If you have a sensory processing disorder, the information may not be reaching its intended destination in your brain, or may take longer to get there).  

A “sensory diet” is a list of activities that is typically provided by an occupational therapist.  This “diet” is designed to help your loved one with his or her sensory needs, and includes a variety of activities such as:

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Using a body sock!
(Image shows a boy standing up inside a stretchy body sock)

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Smooshing into a beanbag!
(Image shows a boy lying on top of a beanbag, pushing into it with his face)

Other helpful activities can include swinging or gentle squeezes.  I like to think of it this way: for people with a sensory processing disorder, it’s as if they don’t always know where they end and the world around them begins.  The information coming into their brain through their five senses is getting jumbled, and this input gives the brain confirmation of where someone’s “edges” are.
I picture a comic strip character: thick, dark lines outline the character.  When you take those thick outlines away it becomes more difficult to tell where that person ends and where their comic strip world begins.

I may seem to be getting off topic, but I promise, it all leads to one place (remember- we’re taking the “scenic route” to get there).

Do you remember what I said about behavior?  It’s all about communication- for our loved ones who take a different path to get somewhere it’s all about getting their needs met and helping us to know how they feel.

If you follow my blog you may have read the post about social stories.  If you haven’t read it yet, you can find it here.

This past Sunday, we decided to try the trip to Target again, with a twist- this time we only went to Target.  I went with WonderBoy, my husband, and the Teen.  There’s a lot to be said for the three-to-one ratio.

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(Image is a boy in a store, holding a stuffed animal against his chin.  There are two people                                                                 behind him, looking at DVDs)

WonderBoy stimmed the entire time we were there the previous week, but this time he decided to sit in the cart.  This provided him some sense of security, and he was more at ease.

I reminded him of what we were doing: “We’re just getting a few items today, and we only have time to be in Target today, okay?”  I found myself repeating these words on what felt like an endless loop.
“Just getting a few things today,” he’d repeat.  Then he’d ask, “And then we will go to the mall?”
This has been the struggle- to get him through these social situations like shopping. “No, not today.  Today is just Target.  We will have time to walk around inside Target once we get what we came for, okay?”
I wanted to be sure that he understood what we would be doing today.  “Remember, once we’re done shopping we will pay and then go out to the car with the things we bought.  Then you can have a special treat!”
After finding the special treat of  his choice, we paid for our items and made our way out to the parking lot.

With papa on one side of him and me on the other, we took a moment to congratulate him- “You did a great job in the store today, buddy!” to which he replied, “that wasn’t me.”  That told me so much with three words.  He continued by later telling me that he didn’t want to talk about it.

You may wonder why I connected this moment to a post about using behavior as communication.  For our children, communicating how he felt about his success in the store involved more than simple words.  He showed me through body language, and through his need for time in his sensory room when we were home.

That level of advocacy is something that makes my heart fly above the clouds.  We were told early on that he might never talk.  For him to be able to tell us that he isn’t in the mood to discuss this major success in his life goes beyond just the words themselves.  It tells me that the day was hard for him, and that we’ll talk about it on his terms.

Behavior is the communication of need.