Sensory Processing and Panic

When people talk about sensory processing disorder (SPD), most of the time you hear about how children need input - spinning, swinging, carrying heavy loads. And often you hear about texture sensitivities - kids who won't walk on grass, who only wear clothes made of certain materials, who think the seams in socks are painful and who find the tags in their shirts unbearable.

You hear less about auditory processing, but just as the other senses can be disjointed and dysfunctional, so to can the ability to process things a person hears.

Our current working hypothesis is that this is part of Acorn's difficulties. Especially since he follows directions well when they're given in sign language (visually) as opposed to verbally. All of our private therapists (OT, speech, psychologist) believe this, and while the school is not so keen on the idea, they agree that there are times his hearing seems off, and that directions given in sign language or using PECS or a communication device are easier for him to follow.

We've known for a long while that something was off in his hearing (though repeated hearing tests have shown normal hearing). As a small baby, his reaction to many toys that made noise was complete and utter terror. As he's grown, that's improved, but things like lawn mowers and vacuums still bother him. There are times where things you say don't seem to make sense to him, even though the same words made sense the day before.

The most amusing - or maybe most embarrassing - outcome of this is actually fairly common in kids with SPD.. More often than not, if you ask him to put on a specific article of clothing, he takes off a different article of clothing. So when the occupational therapist asks him to put on his shoes, he sometimes tries to take off his pants. She says it's a daily occurrence there, and everyone expects it, so at least we feel less crazy when it happens at home.

All of this background is so that you understand why what I'm about to relay happened, and why it was so scary for us.

Acorn does best with a very consistent schedule, because it's easier for him to know what to expect. Explaining changes to the schedule is hard, because he doesn't always process what's being said.

We needed to make up some swimming lessons he missed due to illness,  and so we were going to swimming at a different time than usual, on a different day than usual.

We all told him that he and I were getting in the truck to go swimming. Instead of running for the truck, he waved "bye" to me. When prompted again, he came running, but still didn't really get it. I went and opened the truck door, and told him to come and get in, but he walked to the car, hoping to get in there instead.

I reminded him that we were taking the truck, and asked him to come over and climb into his car seat. And then I opened my door to put my bottle of tea into the cup holder.

When I turned around, he was no where in sight.

In fact, he was not in the street, not between the cars, not in front of the cars......he had vanished.

Instantly, I started to panic, though I knew he couldn't have gone far, and anyplace in the street would have still been in my line of sight (we have a corner lot, giving a lot of street to look for him in). Since he hadn't come past me, he had to be somewhere down the side of the house.

I started around the side of the house, since that wasn't in my direct line of sight, and as I walked farther from the cars, I could see him hanging out at the corner of the deck. He looked at me somewhat confused, wondering why I was calling for him.

Relieved, and also mad, I picked him up and carried him back to the truck, in hopes that we wouldn't be too late for swimming....and with me wondering again how many times this sort of thing is going to happen. He's only escaped the house once, but he's since learned to take the plastic door knob guard off the door, so it's likely only a matter of time before he escapes again. We already have rules that if we're playing outside and he runs into the street, we go in immediately. He's bolted in parking lots.

But so far, there's no real way to get it across to him that running off like this isn't a good idea.

The Great Outdoors in Beer City, USA

Can you feel that?

April Pictorial

It’s that time again for my monthly photo dump of Facebook/Instagram photos. Haven’t been blogging much in case you haven’t noticed. I really really want to make some more videos, but time has been getting away from me. There have been some serious conversations going on around here in regards to Andrew and college and Karli and her dance/gymnastics future and all my brain cells are getting used up. Plus everyone is just enjoying the nice weather we are finally having. We have had a few baseball games already and we only have about 40 more to go before the end of June. I’m just going with the flow day to day trying to keep up with it all. However, Sunday I literally did nothing but read an entire book all day while listening to the rain. Sometimes you just gotta relax and take a time out.

We went on a little road trip over Spring Break to the Pro Football Hall of Fame. See the video here.

Dan Marino

Lots of me

Chase…the only Redskin fan in the house…probably because my dad is a Redskins fan.

Cute shoes at Target that Karli wanted me to buy for her, but I didn’t. Ken would have died!

First time I ate at Max & Erma’s. I LOVE Tortilla soup.

College visit to Central Michigan University. Andrew loved the school, but it’s at the bottom of my list. Too far away! 3 hours.

Cute way Andrew asked a girl to Prom :) It’s about 200 tea-light candles.

My adorable furbabies

Tori trying out for the Big Bad Wolf.

I could seriously take a photo every day of the crazy ways Daisy lays around the kitchen.

New highlights!

Happy Spring to everyone! It’s finally here :)

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Oxygen Masks As Metaphors

If you've ever been on an airplane, you know the speech the flight attendants give includes the statement that you should put on your own oxygen mask before assisting other passengers.

That same sentiment goes around special needs communities fairly frequently too, as an admonition to parents to take care of themselves. And honestly, that's been bothering me off and on for a while now. 

Maybe for some people it makes sense. Not to dismiss the wide variety of special needs and medical issues and disabilities out there, but I'm sure that for some families, it really won't kill anyone if parents take a night off, hire a sitter, and go to dinner, even if it takes a lot to find a sitter that will keep their kids.

At our house, however....sitters are just not going to cut it. We need someone trained to care for Leaf - trach trained and reasonably good at assessing her respiratory status. We really need someone familiar with sign language for Acorn. And to find someone who can do both kids at the same time is clearly just not going to happen (even our primary nurse, who has cared for both of them individually over the years, has said they're too much for one person, which makes me wonder a bit about the days my husband or I have both of them by ourselves).

Besides...here, oxygen masks are real, not just a metaphor. If we don't put a real oxygen mask on a child when they need it because we're trying to put on our metaphoric mask, bad things happen. And that's not happening if I have any control over it.

The Hoops

The art of not having a job I say art, but it's not a choice is busier than if I had a normal nine to five with a modest income I have had jobs that were more labor intensive like waiting tables and I have had jobs that were more thought intensive like mortgages and sales but when you get sick there are hoops mass amounts of hoops through which one must jump in order make order and put in line

Preschool Love

"Who did you play with at school today?" I asked Elliot yesterday at the dinner table. "Did you play with..." I named a few of his classmates.

"No, no, no," he answered. "Just...," he replied, naming his favorite friend. She's a cute little thing: blonde hair and glasses. She favors princess dresses, despite the muddy outside play area.

"We built a house," Elliot told me, which was the first sign that this conversation was going to be unusual. (Typically, he doesn't offer up many details about preschool and his usual response to anything related to his time there is, "I really don't know, Mommy.")

I found out that they built the house out of chairs, long pillows and sheets.

"What did you do inside?" I asked, thinking that this is where he'd run out of information.

Boy, was I wrong.

"Come here," he said, leaning sideways from his chair toward me. "We did this."

And he gave me a kiss.

Kissing in the sheet house at preschool? My little Elliot? A strange mixture of shock and jealousy rushed through me. My baby had given his heart to another woman at such a young age. Then I realized how ridiculous that thought was. After all, he's three-and-a-half. This girl is his special friend. And one of the teachers has already told me that she's very "touchy" and likes to frequently kiss and hug Elliot.

"You really like her, don't you," I asked.

"It's not like," he said in a most definitive voice. "I love her."

And so it begins.

Celebration of Women & Craft Beer!

Lunch For Acorn

Being able to open his lunch box all by himself will be a huge step towards independence.

Concert Frustrations, Concert Fun

"Gemini, I really liked your concert," said Elliot in a soft voice to one of the two twin brothers who make up the veteran children's musical act. Crouching down to Elliot's level, the musician signed the CD we'd just bought. He even posed for a picture with Elliot, which we promptly texted to Daddy, who's out of town and couldn't join us.

Then, we walked out into the rain. "That was a great concert," I said.

"Yes, it was," Elliot agreed.

We'd just seen one of his favorite musical acts perform live...for the third time. I think this was the best time ever, since Elliot now knows so many of their songs. Even so (unlike me), he did not sing and dance. He did not imitate the band in making hand gestures to go along with the songs. He did not do the "kids' part" in the song about Mr. Stingy Man and the Rooster. Instead, he sat spellbound, a small smile on his face, holding my hand for much of the show.

But he loved it. 

I knew we'd have a great time. I knew it would be a fantastic way to spend a rainy Sunday afternoon. I knew that Elliot would get a kick out of hearing two of his most listened-to CDs come to life. That's why I was so incredibly frustrated two hours prior, when he sat on the floor screaming, "I don't want to go to the concert. I don't want to see Gemini." I definitely lost my cool when I had to force on his shoes and jacket to get out of the door in time.

Why? Why? Why...especially when he'd been so excited about the concert last night and this morning? When he remembered how much fun he'd had last time?

Despite the frustration, I'm glad my baby and I shared this musical experience. I'm also glad that we now have a new addition to our Gemini music collection. If the first two CDs were any indication, I'll know the 24 news songs in a matter of days.

5 Lessons from the MI Beer Community

Wait, we can learn from the Michigan Beer community?

Yes, I'm serious... and sober.

Shocking, I know. 

Even before Grand Rapids won the Beer City, USA title last year, I have witnessed some pretty incredible lessons from this beer-loving community.

Family is Important.
It's rare to go into a brewery with my kids for lunch or dinner and get the stink-eye anymore -- because we're not the only ones toting kids! Breweries offering high-chairs, kid's meals & kid-friendly cups are becoming more common.

Families aren't going to breweries to get drunk; we love savoring good beer, we love having the opportunity to share the experience with our kids. We've even taken our kids on tours! I've also noticed an influx of baby-pictures posted on brewery FB pages, such as "Help welcome the newest member of the Dark Horse family - brewer XYZ just had a baby girl!" Gone are the days where having a baby meant "Nice knowing ya, man."

Lesson: Life [in the brewery] doesn't end when Parenthood begins. 


No Room for Envy.
Grand Rapids may hold the Beer City, USA title, but the entire state seems to celebrate with us. You may find brewers from Harmony, for example, hanging out at Shorts & other breweries across the state -- enjoying a brew with new friends & old. When a new brewery pops up in a Michigan community, surrounding bars & breweries rally around their grand opening. Beer collaborations between breweries are becoming more popular as well as tap-takeovers. Being able to have access to a variety of limited Founders' releases on tap in a random restaurant in Ann Arbor, for example, is another reason the Beer City, USA title goes beyond Grand Rapids.

Passion may be the driving force behind the 100+ breweries in Michigan, but I don't necessarily sense a fierce level of competition between breweries.

Lesson: Respect & love thy [beer-loving] neighbor. 


Everyone is unique.
I have a difficult time choosing my favorite brewery, let alone my favorite beer. The Michigan beer community realizes that choosing a favorite is impossible, and embraces the vast variety of choices available. Just attend any Michigan Brewer's Guild Festival. I don't know any attendee that will park themselves at one solitary brewery for the entire festival. Everyone who attends, down to the brewers are excited to have access to so many options. This is another excellent example of the non-competitive spirit the Michigan beer community adopts.

This community also believes there's a beer out there for everyone. You may not enjoy IPAs, but how about a bourbon-barrel aged beer, a fruit infused beer, a scotch-ale... need I go on? Beer lovers respect that every individual is an individual with different tastes. We may celebrate an IPA day, and a Stout Day, for example, but we don't look down on you if you don't enjoy a particular variety of beer.

Lesson: Celebrate each other, don't segregate. 

Great Water = Great Beer. 
After living in Tucson for 3 years and wanting to vomit after tasting desert-city water... I moved to Grand Rapids and happily drank the tap-water like it was LIQUID GOLD.

Pop quiz: What's the main ingredient in beer? Hops? Malt? What is Water for $2000, Alex?

That's right. There are a slew of breweries participating in a Clean Water initiative, to protect our gorgeous Great Lakes, that are just as great as the name states. Knowing just how vital good, clean water is to the brewing process has led many breweries surrounding the Great Lakes (yes, this goes beyond Michigan!) to sign on. Yet another reason this community of beer lovers is pretty damn amazing.

Lesson: Don't take for granted the amazing natural beauty that surrounds you.

Responsibility Matters. 
Let's face it, delicious Michigan craft beer can come with very high alcohol price-tag. Many of us beer-lovers savor & sip our beloved double & triple IPAs... we're not playing drinking games with these precious brews. But... there's always that guy or girl that goes a little too far & has one too many. And yes, I have been that girl before. But, I don't drive, I just puke. 

If you have had the pleasure of attending any of the Michigan beer festivals, you will find a "Blow Before You Go" tent where you can have your breath checked if you are considering driving home. They offer resources for local cab-companies right in the tent as well. Also noteworthy? The $5 Designated Driver ticket available at every beer festival. Call your favorite pregnant pal and get them on board! HA!

Lesson: Know your body and respect your limits.


So there you have it. 5 awesome lessons from the beautiful array of people that make up the Michigan Beer Community. Did I miss anything you've learned from your favorite craft beer lover? Let me know in the comments.

CHEERS!

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