Tag: Anxiety

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.

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.