Most of you know that if there’s one thing I’m adamant about (yeah, I know–I’m adamant about lots of stuff. Keep your arms and legs inside the car at all times, and let’s go on a little ride, shall we?), it’s the fact that the chaos that follows Mason has very little to do with Down syndrome, and a whole lot to do with the fact that he’s just that kind of kid.

But from a practical standpoint, there are a few Down syndrome related issues that do impact our daily life. One of these is the low muscle tone/ligament laxity issue, technically termed “hypotonia.”

Often, prospective adoptive parents will ask questions about various conditions in order to be prepared with specific challenges the child might face. I realized that there are several things a parent needs to be aware of concerning the challenges posed by hypotonia. So I comprised (in no particular order) the following list:

A hypotonic child can put his leg straight up so that his foot is in his big sister’s face while riding in the car seat, and he can just leave it there with no effort on his part.

No matter where you put the box of wipies on the bed while during a diaper change, he can hike his leg up and kick them off the bed.

Carrying the hypotonic child is similar to trying to hold on to a large bag of water with a 30-pound ferret inside.

Regardless of how securely you fasten the buckle in the shopping cart, the child with hypotonia will be able to escape, usually in the check out line as you are explaining to the sacker that you would like the cold items bagged together.  (Incidentally, other shoppers find the sight of a small child riding on the checkout conveyor belt quite amusing….)

A hypotonic child can reach behind his back without any detectible upper-body rotation and grab glass bottles out of the shopping cart and hurl them onto the concrete in the parking lot, making his older brother believe that there has been a drive-by shooting, and that since he doesn’t feel any pain, the target must have been their mother whom he expects to drop to the ground at any moment.

Although no scientific studies have been conducted on the matter, anecdotal evidence would indicate that hypotoina is associated with mad dancing skills.

Tags: dancing, Down syndrome, hypotrophy, ligament laxity, low muscle tone

5:01. 

AM.  

There is a small person beside bed. I’m dreaming. That’s it—25 days of Christmas has gone to my head, and I’m dreaming about elves.

This is evidently Whiny the Elf.

“My noisemaker stopped working.” Sniff, sniff.

I look at the clock. But that’s not how I know it was 5:01 am, because there is no clock. Or rather, there are no bright red numbers hovering nearby.

Hubby sits up and looks around. “Power’s out.” Then he looks at his Blackberry, which is how I know what time it was.

Now, in my book, 5:01 am is still yesterday. Me and 5:01 am, we do okay as long as we stay out of eachother’s way.

The 6 year old (oh yeah, about the whole elf dream—it wasn’t) tells me she’s too scared to go back to her room, and frankly I’m too tired to get up and walk her, so I give her the go-ahead to hop up under the covers with us. It’s at this point that I realize it’s a school day, and since my alarm clock is, for the time being, merely a chunky plastic dust-magnet, there will be no blaring Spanish-language-hip-hop station to serenade me out of the oblivion I’m hoping to sink back into. There’s an upside to that, of course. A power outage is the perfect guilt-free excuse for getting the kids to school late. Except that I’ve just received a letter telling me that my preschooler has been late or absent just a few days shy of the school district filing class C misdemeanor charges against me.

I go grab my cell phone.

5:07 am

The Hubby calls the power company. The android on the other end tells him that our power will be up before midnight, which is 18 hrs and 59 minutes from now. The Hubby hangs up, perplexed, then calls back. By now the android tells him a crew has been dispatched, and our power will be restored by 6:19am.

5:12 am.

Still trying to program the alarm clock function on my cell phone. Having once accidentally deleted the camera function on this very same phone, I’m a little wary of pushing too many buttons. I finally get it set up to go off at 6:10—less than an hour away. I debate resetting it for 6:13, so I’ll have at least a full hour—because we both know that 3 minutes could make all the difference. I go ahead and turn my clock alarm to “radio” so that it will come on when the power comes back up. Just in case my mad phone-alarm-programming skills fail me.

5:17 am.

 Amazingly, I’ve managed to fall almost asleep. Then The Hubby announces that he is getting up, because he needs to leave the house by 6. I’m delighted that he values my opinion enough to run this decision by me.

At this point, I remind him that the tankless propane water heater has an electric starter (for the record—this is the only drawback to the tankless propane water heater, and it has only come into play twice in 5 years. I feel like I should have a bumper sticker that says “Ask me about my tankless water heater.” And I should get commission for it, too), so we have no hot water. Not only that, but before I went to sleep the weatherman told me that it was going to be in the low 30s, so “no hot water” is a gargantuan understatement. Try “might as well just dump the ice tray on your head.”

One thing I haven’t told you about The Hubby yet: he grew up in a completely different world than I did. Probably than you did, too. They didn’t have indoor plumbing until his birthday cake had double-digit candles on it. In order to shower, they’d boil water on the stove, then take it out and dump it into a barrel and cool it down with water from…well, I’m not sure where the other water came from. A pump, or maybe a hose. I know ultimately it came from an irrigation canal that runs behind their house. But that’s not really the point. The point is, as long as we have a gas stove, a little thing like a power outage isn’t going to stand in the way of The Hubby taking a shower.

5:25 am

I had no idea boiling water could be so noisy. Have I been making this much noise when I boil water all these years? Who knew. I guess it never mattered since there was never anyone trying to FALL ASLEEP IN THE NEXT ROOM.

5:35 am

The Hubby is heating yet another pot of hot water to dump into the Home Depot bucket (Home Depot buckets are indespensible. I think I’m going to start giving them as wedding presents. No home should be without one) when the smoke alarm starts going off.

See, I have a commercial propane stove. It gets really hot. So hot that it requires a commercial vent…which runs on electricity. So at this moment, the fan is not running. My best guess is that during the food-fest that was Thanksgiving weekend, something got spilled on the stove and collected on the drip tray beneath the burners, and that something is now giving off smoke.

Our smoke alarms are really loud. Really, really loud.

5:45 am

In the past 10 minutes, the smoke alarms have gone off 4 times.  The Hubby has alternated tending the water on the stove with rushing to fan the smoke detector with a placemat. The 14 year old and the 10 year old are now awake, and they are all having a conversation in the living room. The fact that the alarms went off 4 times before they came out to see what was going on doesn’t instill much confidence in me that my children will actually respond in case of an emergency.

5:59 am

The Hubby finally has enough hot water to take a shower. If I fall asleep right now, I will get 11 minutes before my phone alarm goes off. I am almost there. I hear the shower door open and close, and then blissful nothingness….

6:00am

The sound of Spanish language hip-hop blares me back to consciousness. “Hey, look at that honey—they got the power back on 19 minutes early. I guess you could have waited after all.”

6:01 am

Nothing that happened after this point should really go into print….

Tags: alarm clock, dream, electricity, elf, hot water, indoor plumbing, power outage, shower, sleep, smoke alarms, tankless water heater