Tag: Anxiety

Navigating food issues

I may have mentioned this a time or two, but the boys really struggle with food.  For Wonder Boy, it’s a combination of being 5 and preferring to eat nothing but chicken nuggets and string cheese (he does eat a few more things) every meal for the end of time and also having sensory needs which are not met by many standard “kid” foods.  For example, anything soft or creamy is totally out of the question, with the possible exception of ice cream.  He won’t eat regular yogurt (soft, creamy, and full of stuff that he doesn’t trust), mac & cheese (though he will eat pasta with parmesan cheese), hot dogs, the list goes on.

For Speedy, it’s a combination of medication which prevents him from being super hungry and a major anxiety about…everything.  That anxiety at mealtime is typically connected to wanting to please his parents, aide, and teacher and being terrified that he’ll fail.  No child of 7 should have to feel that level of anxiety, but it is with him 100% of the time.  Because of his meds, he really can’t eat a lot at any one time, and because he may leave food on his plate, in his mind this is letting us down.  This all manifests as stomach cramps, and the cycle just continues to get worse.

As a result of these things, we’ve come up with some alternatives.  For Wonder Boy, we focus on just getting protein in him and the key vitamins and nutrients.  As long as he’s had a peanut butter sandwich (no jelly, please) or chicken nuggets we’re happy with the protein, and in a pinch he can have a meal replacement shake.  For Speedy, we feed him many tiny meals throughout the day, and his aide at school has been an integral part of making this work.  At dinner, we allow him to stay focused on something like music or an educational program on television, and then he’s more likely to actually eat without anxiety.

Recently, we signed them up for a program at one of the universities which allows Occupational Therapy students to work directly with kids.  They play and provide the kids all sorts of input, allow them to crash, swing, roll, and spin.  Then all of the kids go into the kitchen, where they work with the students on having fun with food.  The students provide the kids with an example of something fun they’ll make with food, usually a design or an animal.  Then they give the kids the food items needed and see if they can recreate the design.

Along the way, they ask the kids if they will smell the food, then “kiss” the food, then move up to touching the food against their teeth.  Wonder Boy got as far as the kiss yesterday with one of his least favorite foods, celery.  This was huge for him!  Last week they made animals with apple slices, raisins, string cheese, and sugar snap peas.  He now will eat sugar snaps as long as I make him a “mantis” out of his food.

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Admittedly, this mantis is missing four legs…but you get the idea.

I know that eventually mealtime should get easier.  Having raised up two other boys, I’ve watched them move through various food phases and ultimately become people who really enjoy a wide variety of items.  In the meantime, we navigate each food encounter with the precision of a highly-skilled CIA operative.  At times sneaking in the stuff they need, and negotiating as though our lives depended on it.

Uh…a little help here?

Tomorrow is the first day of a brand new school year.

To say that we’re ready would be a dramatic understatement.

So what do you do when you’ve had enough, when you feel your patience slipping away, a veritable mudslide washing away the ground beneath a house?

Well, the first thing you must remember to do is to breathe.

It’s okay, we all yell once in awhile.  And while there are 24,000 articles on the internet waiting to tell us how horrible we are for losing our tempers, right here is a post telling you that you are normal.  You’re going to get stressed out.  And it’s likely going to happen on the night before the first day of school, when you have just spent 45 minutes reminding your child to eat “no, sweetie, one strand of spaghetti is not enough.  PLEEEEEEAAASSSSE could you take another big bite” and you feel your temperature rising and you are worried about the many items on your child’s school supply list and you have spent weeks preparing your child for THIS exact moment and your other son is contorting himself into pretzel-like shapes while rolling his eyes up into his head and mimicking a Saiga Antelope and disassembling a cucumber slice, one seed at a time.

You’ve packed the backpacks.
You’ve met with the teachers.
You’ve emailed the aides, the special ed teachers, the Occupational Therapists, the principal, and the head of special ed in your school district.
You’ve written social stories. (more on that in a bit)
You’ve read said social stories over and over.
You’ve visited the classroom.

So when you’re on the cusp of the beauty which is that long-awaited first day, why on earth would you get so snippy?

Well, if you’ve ever seen Ol’ Yeller, you know that the boy in the movie starts yelling at his beloved dog in an effort to make saying goodbye easier.
I would bet that the night-before-school snippiness would be for similar reasons.

Think about it- it’s never easy to put them on the bus and say goodbye for the first time.  It’s not easy to see them go regardless of their age.  When I see my 16 year old off for his first day at school, it’s not easy.  The year is full of so many unknowns for them, and all we can do is hope that we’ve done everything we can to prepare our kids for what lies ahead.

So, I say again: BREATHE.  Good!  Now do it again.  Sit down on the couch with your kids, give them lots of hugs, and remind them of all the reasons you love them so much.  It’s good practice anyway, and it may be the restart your brain needs. And then tomorrow morning, when you put them on that ginormous yellow bus, give yourself a hug and remind yourself of all the reasons that they love you.  

The second thing you need to do now is know that you’re giving them the tools they’ll use in the world.  For some kids, that means a communication device.  Others, a PECS board.  Still others yet, sign language.  You may be working with them on how to manage transitions, or you may be focused on difficulties with eating.  Some households are working on all of these and many more, all at once!

Give yourself room to understand why you may be particularly stressed.  Remember that while you’ve been teaching your children to use these tools, you’ve also been learning how to use them.  You may be figuring out that transitions are hard for you as well, and utilizing the same types of methods that your children are using.  You may have recently realized that you need substantial recovery time from major events in order to be able to attend to certain tasks. Guess what?  Your kids probably do as well.

And while we’re comparing you to your kids, keep in mind that you have spent all day at work, focusing on a million different things and interacting with a lot of people.  When you get home to the place which you’ve filled with all the comforting things, you may start to unravel.  You may start to come unglued.  You may experience some meltdown.  We see it day after day, the minute the kids walk through the front door it falls apart.  Holding it all together at school is hard- it takes energy to maintain certain accepted behaviors, and that requires time to reboot.  We as adults are really no different.  This is my theory as to why we’re far more likely to snap at loved ones than coworkers.  Some studies have indicated that it’s more to do with the quality of home life versus work life, but I suspect that for some of us it’s really that need to do a hard reset.

If some of this sounds as though I’m telling myself, you’re right.  I tell myself these things whenever I feel that mudslide pulling me down.  I hope that this has helped you to know that you are doing an AWESOME job!

It’s hard to believe that the boy in the far left photo is starting his sophomore year in college (this is him in first grade, I believe).  The boy in the middle is starting his junior year in high school (this is him in Kindergarten).  The boys on the far right you may recognize a little better, although the view is less than ideal.  This is Wonder Boy and Speedy, as WB went off to his second year of pre-K and Speedy sped off to Kindergarten.  They’re now going to first and second grades, respectively.

It goes by quickly, y’all.  Too quickly.

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.