January 29, 2012

How To Build A Better Diaper

Moe is a boy. And as such, he likes to do one thing most boys enjoy doing, and that is sticking his hands down his pants. He has no sense that he shouldn't, so why not? Generally, we just shout "hands up!" and he takes his hands out and moves right along.

Generally, I wouldn't be too concerned about this but it has caused a pretty serious problem at night. As Moe is going to sleep, he will (even through his pajamas, which are one piece and zip up the back), try to put his hands down the top of his diaper. This then folds the top of the diaper down. Then, somewhere between midnight and 2 am, Moe pees. The diaper, in its folded and crumpled state, does not contain the urine, and Moe gets soaked and uncomfortable.

For the last two weeks, this has happened almost every night. Moe cries. I change him. We fall back asleep, usually fairly quickly. Sometimes in the morning this happens again. Some nights, he's going through three pairs of pajamas, and three diapers.

Obviously, this is problematic. Moe and I are both on a pretty serious sleep deficit. Jelly sometimes wakes up as well. And let's not dwell on the affect this is having on the environment with all the extra laundry and diapers.

We are seeking solutions. I tried giving Moe melatonin, thinking that if he fell asleep quickly, he would not have as much time to mess up the diaper. This actually worked, but, as generally happens with melatonin, he woke up on his own in the middle of the night but instead of falling asleep after a quick diaper change, he was up for hours.

Jeff has tried to engineer the problem. First, we put some regular underpants over the diaper, thinking an extra layer might help. It didn't. Next, Jeff put some stiff tape on the top of the diaper to keep the top from folding over. Instead, Moe was able to use the top of the diaper as a kind of handle and ended up just moving the whole diaper around. It leaked.

Last night, we started by putting painter's tape on the diaper, covering the diaper fasteners as well. We figured it would help but not be hard to change in the middle of the night if necessary. This failed within minutes.

Jeff followed this up with masking tape.

I can't comment yet on the success of this. Last night was a nightmare, as Moe had a pretty serious meltdown, from about 7-9. He was exhausted, but unable to fall asleep. He was in full sensory seeking mode, and we tried every calming technique we knew. Some would work for a bit, but as soon as we even mentioned going back to bed, he'd scream again (hooray for receptive language?!). We broke down and attempted to give him melatonin, but by then he refused to chew the tablets.

We had some of the liquid stuff, so after a quick dosage calculation (if 10ml is 2.5mg, how many ml would be 500mcg?), we got him to drink the stuff. I'm not sure it even mattered at that point, as he was already starting to slow down. We stopped hearing from him some time after 9:30.

The good thing is both kids slept in until about 8:45 this morning. Moe's diaper had a little leak, but Jeff insists this was not a failure of design, just length of wear. Further testing needs to be done.

January 24, 2012

Compare and Contrast

After Moe was diagnosed with autism, I had to learn to stop comparing him to the other kids we knew. It took a while, but eventually I tossed out the milestones books, and replaced phrases like “should be able to” with phrases like “his own path” and “he’ll get there when he’s ready.”
An intensive one on one early intervention program necessitated leaving Moe’s regular play group, so I had fewer opportunities for direct comparison. Moe then moved directly into an autism preschool class, his peers all occupying the elite portion of the spectrum that allows them to be in this class. So most of the kids I see on a daily basis are also autistic.
I do still keep in touch with some people from the mom’s group. Many are friends, and I see their kids occasionally. Last week we all went out for sushi, and it was one of the first times since Moe’s diagnosis that I did not have to fight back tears as I heard the stories of what their kids were doing and how they were preparing for kindergarten.
It helps that I have a typical two year old as well and can finally relate. Actually, she’s what my husband and I call “hyper-typical.” She breezes past milestones with the greatest of ease. She plays with toys exactly as the toy manufacturers suggest. She doesn’t eat the crayons or play-doh. She speaks at the level of some three and four year olds and plays well with others.
I’ve learned to stop comparing Moe to his little sister as well.
I have recently started to become close with some of the moms from Moe’s class. I have many online connections, but these real life connections are building close friendships I haven’t felt since I stopped going to the play group. We chat as we pick up our kids from school, meet for coffee or breakfast, and exchange long emails when our kids have finally gone to bed for the night.
And once again, I find myself comparing. I am filled with such hope when I learn that one kid started talking at age five. Another finally just learned to use the toilet. These things are possible! I read the stories and books, but there’s nothing like hearing from someone you know to make you feel like it is possible.
I also compare the other way. One kid recently showed his mom the word “x-ray” on his iPad after he broke his arm. Another kid is finally speaking in sentences. The list of achievements goes on and on, and I am thrilled for them, but I also think “Moe can’t do that.” And I forget all about what Moe can do, and all that good stuff I learned about getting there when he’s ready.
But Moe has a way of reminding me. A few nights ago, as we were getting ready him ready for bed, Moe started saying “mom” over and over. At first I wasn’t sure. Was he just making random sounds? Was he saying he wanted “more” swinging? And then, as if he knew I doubted him, he looked and pointed right at me.
Moe will point or touch pictures or items to make choices but this was the first time in over two years I can remember him pointing like that. We were so thrilled with this that later that night we asked him to give a kiss to each of us in turn, first Mom, then Dad, then little sister Jelly, which he begrudgingly did, but did nonetheless.
And all of that good stuff that I learned came flooding back. And my heart was filled once again with “on this own path” and “when he’s ready” and lots and lots of hope.
And most importantly, with so much love for my perfect little boy.
Originally posted at Hopeful Parents, where I contribute on the 14th of every month.

January 20, 2012

You Can Thank Me Later

Things are busy here. Appointments are being made. New therapies are starting. I have spent a lot of time on email and phone coordinating. That doesn't leave a lot of time for writing.

I apologize. So please accept this gift. You can thank me later.

video


January 12, 2012

Autism. Nonverbal.

Autism is a disability.

Perhaps this is stating the obvious, but before I had a child with autism, I never thought about it this way. Maybe a learning disability, but not a disability disability. You know, like the kind that could be in the Special Olympics.

I didn't know anything. I was blissfully ignorant.

That is because autism is for the most part an invisible disability. Look at Moe and you'd probably have no idea he wasn't just like any other four year old.

And this is why it was so important to do something I had been putting off for a while. I finally got Moe this bracelet.

Moe is a runner, and although we all do our best to make sure he is safe, there is always a chance he could get away. And while he was running and enjoying his freedom, he would have no idea that he was lost, or that someone wasn't right behind him to bring him home. He wouldn't be able to ask for help. He wouldn't respond if someone called to him.

Losing Moe is my number one biggest fear. I worry about it twenty four hours a day. I have dreamt about losing him. And of course, there was the time he did get out of our yard.

The flip side of the bracelet has an ID number and simply says:

AUTISM
NON VERBAL
CALL IMMEDIATELY

Emergency professionals know to look for these bracelets, and so do a lot of other people. If someone did find Moe, they would know why he wasn't talking to them. And most importantly, there is an ID number on the bracelet, and that number is registered with MedicAlert. So when someone calls them, they know how to get in touch with us right away. 

This is not an expensive service - just $20 a year. I hope we never have to use it, but knowing Moe is wearing that bracelet gives me just a little bit more peace of mind.

Now I just have to remember to put it on him every day.

January 7, 2012

Goop

Moe, like so many kids on the autism spectrum, does not do well with unstructured time. When his time is not being actively managed, Moe tends to get into trouble. In our house, that includes things like splashing in the fish tank, climbing onto precarious spots, or taking off his pants.

Over winter break, Moe had a lot of unstructured time.

December 31. Two o'clock in the afternoon.

The house is a mess. We are having people over for New Year's Eve. They are planning to arrive around 5:30, and I am just starting to get the house ready when we hear an unfamiliar noise.

Jeff runs into Jelly's room to find Moe standing on top of her dresser. He is covered in something. What is it?

We notice the tube of lotion on the floor. Apparently he had gotten into that then thrown it on the floor when he had emptied it. But there was something else.

Shit. It's Vaseline.

I look up and things starts to come in to focus. Moe's new shirt is covered in Vaseline. I scan up. There is Vaseline on the wall.

My heart drops.

There is Vaseline all over the quilt hanging over the dresser. The quilt my mom made. I am devastated. I try not to panic.

Vaseline is a Petroleum based product. It is not something that you can just get out by throwing it in the washing machine.

We go into action mode. I go online, and find some ways to get vaseline out of fabric. The most promising one involves isopropyl alcohol. But I'm reluctant to just follow instructions from a random person on the web. Jeff thinks I should take the quilt to a professional cleaner, but there are a million dry cleaners and I don't trust them to do a good job. Yelp isn't helping.

I think of calling a local quilting shop, Eddie's Quilting Bee. Jeff makes the call. They tell him to call Sally and give him a number. We know nothing more. Jeff dubs her The Oracle.

We call Sally, who instructs us to find a product called Goop, then to wash the quilt in the washing machine with laundry soap (not detergent). Jeff tells me Goop is available at Walgreens. I leave the house.

I drive to Walgreens. No Goop. Then I drive to Rite Aid, CVS, O'Reilly Auto Parts, Pep Boys and OSH. Jeff calls Home Depot and Target. No Goop. And no soap. After an hour, I come home. Jeff tells me Goop is at Walmart - not Walgreens. I remarkably do not kill him. The closest Walmart is about 15 miles away. We throw the kids in the car, and head over.

The parking lot is a mess. I drop Jeff off and drive around with the kids. Jelly falls asleep. Moe and I share french fries from the McDonald's drive thru. At 4:00 I hear them ring in the new year in London. Eventually, Jeff texts me. He has Goop!

I pick him up. "Where's the laundry soap?" I ask. He forgot it. Again I do not kill him. I remind myself he is helping me.

He goes back in. I park the car and wait while Moe tries to wiggle out of his car set. The fries are gone. Jelly wakes up.

Eventually Jeff gets the soap, and we drive home. Jeff goes to work on the quilt. Goop smells a little like gasoline.

Our friends arrive and we have a lovely new year's eve with orange champagne cocktails and play Just Dance on the Wii.

We have no idea how to use a bar of laundry soap. Eventually we give up and use detergent.

I say goodbye to 2011.

The quilt is not perfect but it looks pretty good. But even after three washes, it still smells like Goop.

January 2, 2012

Looking Back, Looking Forward

2012. So, far, it feels a lot like 2011. Funny how that happens.

And yet, as I look back I see how much has happened over the course of the year.

In 2011, for the first time, I walked with family and friends in the Bay Area Walk Now for Autism Speaks, I went to BlogHer and wrote a novel for NaNoWriMo.

Moe turned 4 and Jelly turned 2.

We faced many challenges with Moe, especially around sleep and aggression. Moe also got his first stitches.

I lost a friend to cancer.

What will this year bring? Will this be the year Moe learns to speak? Will this be the year we are able to travel to visit family? Will this be the year both kids will be potty trained? Will this be the year we sell our house? Will this be the year I stick to some kind of exercise routine?

And if none of those things happen, will this be the year I am able to find peace and acceptance of where we are, no matter what?

Happy new year to all of you! Thank you for reading this blog, sharing your lives, advice and support.

For those of you who are new to this blog, or want to look back, here are a few of my favorite pieces from the year:


January
Dreams of a Parallel Universe

February
Unspoken But True
Forever Linked
Fish For Sale

March
No More Wishes Redux

April
One Ranunculus
Notice of Eviction

July
Love on Point

October
Steve 

December
Occupy My House

January 1, 2012

A Very Long Break

Two more days.

On Tuesday, life returns to what passes for normal around here. School will start. I will wake up on time, pack lunches, get kids dressed and fed and out the door.

I cannot wait.

This has been a difficult break for us, probably the hardest one yet. Moe's aggressive behaviors increased throughout the break, reaching a peak on December 26-27. For those two days, it seemed every interaction we had with Moe involved him grabbing or pulling us. He went after the dog repeatedly. We would grab his hands and sharply tell him "no!" but often he would just continue to come at us, over and over. One time he just ran up to me from behind and pushed me. He grabbed Jelly when they were riding in the double stroller.

We couldn't figure out why, only that it was constant. Was he sick? Just bored or missing the routine of school? Were these outbursts sensory in nature? Moe wasn't sleeping well, but we couldn't tell if that was the cause or another symptom.

Things have gotten a little better over the past few days, and we learned that a softer response tends to extinguish the behavior faster.

Jeff also installed Moe's Hanukkah present, a hammock chair/swing that Moe took to immediately, and has been a perfect respite when things are overwhelming, relaxing spot to hang out with a book, and excellent sensory replacement for banging the rocking chair repeatedly against the wall. The installation was a big project, involving things like joists and eye hooks and, in what may seem like a non-sequitur but was actually crucial to the process, walking through setting up WiFi at my in-laws' house.

We also feel pretty strongly that this aggressive behavior is not just sensory in nature like we originally believed, and was so often the case with Moe in the past. There is still an aspect of that, as when he's overly excited, and wants to calm down. But there definitely seems to be an attention seeking component as well, as if he's telling us "Hey! I'm excited!" or "I'm bored" or even "feed me." He's figured out that this "bad" behavior gets a response, even if it is a negative one (which to him, may not seem negative at all). If this is the case, it would be a very good thing.

Back in August, when I wrote about Moe pulling hair at school, his old teacher, told me "aggression is interaction."

I'm starting to believe her.

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