Sorting out the Noise: Eating

Hi!  I’m starting a new series on Beautiful Noise that I’m calling “Sorting out the Noise”.  I know it may not be particularly newsworthy or noteworthy, but I wanted to start sharing some of the things that have worked for our family.  And there’s the fine print- this is not to say that these will work for your family, but they have worked for us and might be worth a shot for yours!

Today’s subject is eating.  This has been a major topic around our house, for a couple of reasons.  Speedy is having trouble keeping on weight or gaining weight, in large part due to his current medication.  Eating has caused him great anxiety, and this may very well be due to the immense attention we’ve paid to how much and how well he eats.post 4

Wonder Boy is five, and either due to sensory issues or the fact that every five year old on the planet seems to be stuck on chicken nuggets dipped in ranch dressing, his repertoire is rather limited.  Don’t worry, he also eats peanut butter sandwiches and plain pasta.  Super nutritious, right?  1048093_10201834077995915_485740303_o

When the teenagers were this age, I remember their doctors telling me that it’s okay if a child eats chicken nuggets at every dinner for a year straight.  And they might have been right, from a medical standpoint.

Frankly, I’m sick and tired of cooking several different dinners, as is my husband.  Yes, you heard right, he cooks.  In fact he cooks more often than and better than I do.  I’m no dummy, I don’t enjoy cooking as much as he does.  He also bakes killer apple pies.  I married smart.

Back on track, kiddo, back on track.  Eating.  So we spent about an hour yesterday at Speedy’s school, meeting with a dozen of our closest friends (just kidding, they are all his teachers and special education specialists and so forth.  We adore them madly, mostly for dealing with what we cannot for six hours every day). A major discussion was his eating, and we shared with them our strategies and they shared theirs.  I know for a fact that we’re not the only family dealing with this, so it was time to send the love your way.

Speedy’s 1:1 Aide told me that she realized that the cafeteria was too noisy for him to be able to focus on eating, so they began eating in the OT room.  Then she noticed that he was still getting distracted looking around at everything, so she gave him headphones and the iPad, and put on his favorite music.  So far, this has worked. He listens to songs while eating, and is able to filter out visual distractions as well as background noise.

At home, on the days when he’s dragging out the meal and saying he’s getting full, we began to make a game of it.  I told him we were going to assign a name to each bite.  The only rules are that we always start with the letter “A”, and move through the alphabet with each subsequent bite.  A is always for Abernathy, because mommy is tired and needs a break from thinking.  For reasons even I am not aware of, this is apparently a reasonable name to assign to the first letter (the way my brain works).  As we come up with progressively sillier names, the food gets eaten and the “full” is forgotten.

For Wonder Boy, it’s been a matter of trying new things (when I have the energy) followed by a preferred food.  As I wade through my old photos, I found evidence of him eating bananas and carrots in addition to pasta, peanut butter, and chicken nuggets.  Carrots have recently come back into the regular lineup, because he has returned to mouthing non-food items.  Sadly, he has chewed through a great many things which are not meant to be eaten, and so our first line of defense is to meet the sensory need at mealtime.

I suspect that the strictness of diet is probably typical for five year olds.  Remember- I haven’t raised a “typical” five year old in 14 years.  Since I often struggle to remember my own name due to pure exhaustion, you can see how I might be a bit hazy on the details of what typical kids need.  Anyway, we’ll keep trying to introduce foods, but in his heart he will probably always be hooked on carbs.  I can’t say that I blame him.

 

Pie for breakfast

Here we are, coming up on the annual meeting to update Speedy’s Individualized Education Plan (IEP).  This is the meeting where the school district sits with us and 10 other people to decide how they can support our child during the course of the school year.  I’ve written about this before, but with each new year comes new needs.  With each new year (and really we do this twice a year, one for each of the young ones) comes our personal growth and changes to how we advocate for the educational needs of our children. With each new year I find myself hoping I’ll become better…faster…stronger.

Come to think of it, I could use a little of that for this hip and knee pain.  But since I’m not a television character from the 80’s, I’ll have to recuperate a little differently.

Anyway, the Meeting.  It rather feels like this big looming thing.  Knowing that it’s coming causes a certain amount of tension, even though the actual meeting itself typically goes pretty well.  [I happen to be a really strong advocate, and I know that not everyone feels they have a voice in these meetings.  I know how difficult it can be, and it may help to go in with someone by your side.  There are several organizations in our community, and likely in yours as well, who will attend meetings with you to support your voice.]

I suspect that a certain amount of this tension is due to the fact that we read the progress reports during the week leading up to the meeting, and this can be really alarming and painful.
“With moderate cuing to stay on task, he copied an 8 word sentence in 5 minutes, 15 seconds.  This is longer than it would take the average 2nd grader to copy a sentence.”

The fact is, that’s really hard to read.  On the upside, it’s a slight improvement from last year when he couldn’t attend to the task for more than a minute or two.

Another portion of this report stated that his 1:1 aide can now get him to eat 50-75% of his lunch (another improvement, but still gut-wrenching).  Eating has been a major stressor in this household, between Speedy’s medication-related difficulties and his younger brother’s seemingly age-related loathing for all things not nugget shaped.
Speedy’s physician has us giving him basically as many calories as we can get into him during the course of every day, and taking medication breaks on the weekends so that at the very least by Sunday he’s ravenous.

The thing is, these reports aren’t particularly surprising. We live with the boy, we know that when he says he has to go to the bathroom, he will spend five minutes making faces in the mirror or reading a magazine if he spots one.  Sometimes he’s just standing there talking to himself, having forgotten why he’s there.  These are things which we approach gently with him because he simply cannot help it.  This is his neurology, and although it’s been incredibly emotional for him and for us, we are working out how to support him with love, kindness, and a LOT of patience.

Ah, patience.  That’s easier talked about than actually used, isn’t it now?  Most of the time I feel like this:

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My eternally patient husband, who may have actually just been rubbing his face in this photo but I think it’s a great representation of the “facepalm” that we find ourselves doing so often

So, what do we do?  How do we mitigate the barrage of stressors from the kids, from the school district, from everything that has become our world?

Well, that’s tricky to answer.  There is no one answer for you, loves.  My advice is to find the thing you love doing, and go do it.  For me it can sometimes be as simple as stepping outside and standing in the sunshine. I close my eyes and lift my face to the sky and breath.  Some days it’s making my car turn towards the gym rather than home.

Okay.

I had written this really amazing thing, images of happy women practicing yoga with the sunrise in the background while they smile blissfully at the majesty of it all.

The reality is that I’m standing in my kitchen, beyond stressed at 6:30 in the morning. You see, after having written this amazing piece about how to handle the stress and about how you need to put the oxygen mask on yourself first, I fought with Speedy about slamming doors and interrupting people.

You win some, you lose some.

Now, if you will excuse me, I have a big decision to make about what I should have for breakfast: apple pie or lemon meringue?

What to do when things go sideways

Some mornings are just more challenging than others.  This morning was about as difficult as most, and this morning’s big fight came when WonderBoy was ticked off at me for not letting him lick the end of the toothpaste tube.  You know, the end where the toothpaste comes out and there’s always a little bit sticking out.

His response was to close the bathroom door and angrily unroll an entire roll of toilet paper.  The brand new roll.  What I imagine happened next was that he flung the toothpaste off his brush and onto the counter.  I don’t actually know, but the paste was on the counter and his toothbrush was in the sink.

I then had about 5 seconds to come up with the logical consequence.  In cases like this, it’s not hard- clean up the mess is the only logical way to go.  But our brains don’t always work like that.  As adults, we think about how we literally just bought that toilet paper and the toothpaste, and our brains flash with the thoughts of how hard we have to work to earn the money to pay for said items. But the thing is, kids don’t get that.

I stuffed the words I wanted to say back into my mouth, and asked him to clean it up.  He was…less than amenable to that decision.  But one thing I do know about him is that if I wait a few moments, he’ll come around.

Logical consequences are hard when your brain doesn’t always want to cooperate with you.  But they do serve as important moments for the kiddos, because they go a lot farther than things like “no tv for you!”

Now, with 20 teeth brushed (make that 40, with Speedy having also brushed), and the bathroom all cleaned up, there is some not-so-quiet imaginative play happening. Whew!

The Meltdown

The Meltdown

I want to share something rather personal with you.
Wait, haven’t I been doing that all along?  Well, sure, but that’s been mostly about the kids.  This one is personal-personal.

One of the things I’ve recently been able to put into words is the fact that all the components of my life (work, kids, finances, etc) occupy tabs in my brain like the tabs in your search engine.  Currently on my computer, I have five tabs open.  One for email, one for the calendar, one for my Google drive, one for Facebook, and one for this post that I’m typing.
My brain really is no different.  And just like I have trouble closing any of the actual tabs that I just listed (because they’re ALL important!), I seem unable to close the brain-tabs.

Each of my four children has their own tab. Work has a tab, but also each of my side projects at work occupy tabs.  Our bills have one, my husband has one, and our current homebuying chaos has one. That’s eleven tabs right now.  Oh!  And the Special Ed PTA has one.  Twelve.  It’s like my brain is having its own IEP meeting.  Heheh.  That’s an image.

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So.

I can’t close them.  And they’re all running videos and music and one has gifs and none of them are running an adblocker so there are ads too.

Know what happens when your computer has this much chaos?

Yup.  That.  It slows waaaaayyyyyy down. And at some point it decides it can’t do anything you want it to.

And that’s what my brain did this morning.  As my amazingly patient husband and I were talking about house shopping, I started rocking back and forth.  My heart rate increased, and all conscious thoughts flew away.  All I could feel was the steam building like in our Instant Pot, and that valve needed to release or the lid was going to blow.
I vaulted myself into our room, away from the kids, curled into a ball, and proceeded to completely fall apart.
Right on my heels, holding my hand the entire way (I think, it was all blurry) was my husband.  Reminding me to breathe.  Stroking the back of my hand.  Talking in hushed tones.  Letting me pull the pieces of myself back into myself until I started to feel whole.
Only, it doesn’t ever happen just that simply.  It comes in waves, you know, and the body-wracking sobs began again.  The hyperventilating began again.  And once more he stepped in, bringing me back.

Eventually, exhaustedly, and with a LOT of help, I was able to come back around to me.  I hope that makes sense.  It’s almost as if I’m somewhere else when this happens.  You see, with each new “thing” (a deadline, a stressor, even the happy stuff) there is a tiny, barely perceptible fracture that takes place for me.  And when there are enough of them, and I don’t take the time to acknowledge and work on them, those fractures become major fault lines.

I’m starting to feel like I have too many analogies happening here, but what I am really trying to get to is this:

Take the time.

Breathe.

Acknowledge for yourself that this is hard, and that you may need help identifying the first step.

Take that first step, and then the next.

And breathe.

Balancing inclusion and community

Balancing inclusion and community

You might think that words like “inclusive” and “community” mean the same thing, and much of the time you would be correct.
I recently began to see how important a sense of community is to our family, however it didn’t come from an inclusive program.  It actually came to us in the form of a camp specifically for kids with developmental disabilities and/or mental health diagnoses.

Before you start to question where I’m going with this, please know that I am all for inclusion. It’s the vision of the agency I am dedicated to, and it is my own personal vision.  Inclusion allows our children to learn from peers, and it allows their typically-developing peers to develop a better sense of empathy and welcoming to people who may look or act differently from them.

I do also feel that there is a lot to be said for groups where people can come together with a sense that the other people in that group totally get it.  Other parents at the camp our boys attended understood when I might show up with a tear-streaked face.  They’ve had the challenging days and have been through the battery of tests, doctor’s visits, school meetings and more.  The staff got it too, and were always incredibly caring with kids and parents alike.  To know that your children are with kids who all share similar struggles is comforting.  For once my kid’s weird wasn’t standing out. I know. Controversial thing to say.  But when you’ve been stared at for the stimming, the echolalia, the scripting of an entire nature documentary while in the shopping mall, you start to crave time with people who get it.  You just do.  And it’s okay to want that!  It’s okay to seek it out!  And it’s really good to have it help you balance out all the inclusive activities.

The most recent non-inclusive activity for the boys has been swim lessons specifically for autistic kids.  It’s a very small group with an approximate 1:1 ratio (four teachers, five kids) and they PLAY.  Speedy was really anxious, after having tried regular swim lessons for two years.

“I don’t have to put my feet down on the bottom, do I?”

“I can’t swim in the deep end, are they going to make me do that?”

“I am NOT diving off the board, that is way too scary”

“I don’t have to try to touch the bottom, do I? I can’t reach the bottom.  I don’t have to touch bottom, right?  They’re not going to make me do that, right?  I don’t…I can’t…I won’t…I’m scared.”

This went on a repeat for 24 hours prior to the lessons.  He asked quite literally every person he saw, regardless of their connection (or lack thereof) to the swim lessons themselves.

In other words, he was stuck.  Really stuck.  And even when he heard the answers, he was stuck.
But when we got there, and he got into the water and they began to teach the kids in a way that looked like play (genius tactic, btw), this child shed all fears and swam.  He swam underwater, he jumped in from the side, he got super comfortable and he stayed there for the full class.  No meltdowns, no anger, no refusals like we saw before.  Just…fun.

Wonder Boy was his usual apprehensive self. Water makes him incredibly nervous, particularly around his face.  He got through it, however, and only got out once for a bathroom break.  His teacher is a friend of ours, and the mom of a classmate, so he was at the very least in comforting hands, and he didn’t cling to her nearly as much as he has to me in the past.

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All of this leads back around to one thing- there are absolute benefits to the sense of community that happens when we can be with people who live this life, and there are totally undeniable benefits to the other sense of community that happens when the typically developing world welcomes us, gives us time to handle and process information at our speed, and takes the time to meet us where we are, that they may see the world the way that we do.

Two different forms of community, like a yin and yang, balancing each other out. They seem opposite to one another (inclusion and exclusion), yet they are related and both forms of community really need each other in order that both may be successful.  Being in a group just for us gives us a chance to recharge after being in an inclusive environment.  Being in an inclusive setting can bring us new and unexpected connections and knowledge, and lets us share a little of ourselves with people who can then learn from us.

 

Inclusive autistic traits

I love this very inclusive list of the many varied traits to be found in people who are somewhere on the autistic spectrum. That’s just it, isn’t it- it’s a spectrum! It’s definitely NOT a straight line of traits, it can be all over the place in each person and that’s what I love about it so much.
This is my first reblog, methinks.  Please read it, and then head on over to the author’s page to “like” it!

autisticality

Problems

Autism is big and messy and confusing, and no-one really understands it. It’s difficult to make a good summary and description of autistic traits, because generally no-one can agree on what autism actually is. But even taking that into account, I’ve never read a satisfactory article or leaflet summarising and describing autistic traits.  Every description I’ve ever read suffered from at least one of these problems:

  • Wrongly weighted. So many descriptions of autism written by neurotypical people focus completely on social traits. Often autism is described as an entirely social thing, and any other differences are considered incidental if they’re mentioned at all.
  • Vague. The “triad of impairments” is the worst offender here. It divides social traits arbitrarily into “interaction”, “communication”, and “imagination”, but there is absolutely no clear distinction between those categories. They’re meaningless and useless divisions that don’t remotely simplify the description, and so they serve no useful purpose…

View original post 1,742 more words

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.