Monthly Archives: May 2018

Simplicity & creativity need when potty training

“What about potty training?” I asked the doctor.

What I was really asking was, “But what does it mean to have a child with Down syndrome?”

Lyra was less than 36 hours old when we met with the geneticist to determine if, as it appeared, Lyra had Down syndrome.

In the years since Lyra’s birth, I have learned many in the national Down syndrome community view geneticists as “often not our friends.” Nothing could have been further from the truth with the geneticist we met at Akron Children’s Hospital.

“Yes, she has the adorable facial features common in Down syndrome,” were the doctor’s first words after she’d placed Lyra on the exam table.

When my first child, Claude, was born, I read babies require somewhere between 5,000 and 7,000 diaper changes before they are fully potty trained. With the 18-year spread of my five children, I’m a seasoned diaper changer.

For months after Claude’s birth, a diaper-service truck would come to our house once a week, pick up a bag of dirty diapers from our porch and leave a bag of clean ones. All cloth.

Later I bought my own diapers, washed them myself and hung them outside to dry. One of the most satisfying things I’ve observed is the sun bleaching of cloth diapers. No matter how many detergent commercials refer to “sun clean” or “sun fresh,” it means little until you experience the real thing.

Jules wearing the same rubber pants his mother wore in the 1960s.

I continued this with my second and third sons, though with Jules I gave up on fancy Velcro diaper wraps (they inevitably leaked) and went old-school, pinning his cloth diapers and popping him into a pair of rubber pants (now made of plastic, but still called rubber pants).

I didn’t use cloth 100 percent of the time. Day care providers require disposable diapers, and disposables are easier when traveling. But beyond being better for the environment, I had read that wearing cloth diapers aids potty training.

Like the ads say, babies always feel dry in modern single-use diapers. Newborns void without any recognition of the event. But if they feel the wetness, babies begin to connect the acts of voiding with the physical sensations that occur just prior. Eventually, they know they have to go and make it to the potty.

Sounds so easy.

Different methods

There are at least two methods of potty training. Some parents pick an age, commonly 2, and switch from diapers to underpants. My first day care provider, Edna Young, followed whatever type of potty training the parents of her charges chose, but she despised this first method.

“It’s just the adults who are trained to take the child to the bathroom,” she said. And also, “Parents who start too soon end up potty training much longer. Start when they are ready, and it happens very quickly, with little frustration for both the parents and the child.”

Edna taught me much.

My big boys potty-trained with few accidents by the time they were 3½. In preparation, potty seats appeared several months before needed.

When they were ready to try the potty seats, I had my boys pick out candy rewards. Gummy peach rings for number one and big chocolates for number two.

Each time we ran out, I replaced them with smaller candies until it was jelly beans and M&Ms. And then, I would only give them the reward when they asked for it. Eventually they’d stop asking.

This worked great with the first three children. Success was predictable, albeit with occasional accidents, and not an emotional ordeal that would scar the psyches of my boys. I believed I was a potty-training Supermom.

Then I had Leif. Whip-smart, I figured he’d be even easier to train than his brothers. Once again, I let a son pick out candy rewards not long after his third birthday. I stored them in glass jars on a shelf out of his reach in the bathroom — visual incentives.

Leif would ask for the candy, I’d remind him what he needed to do first and he’d give me the toddler equivalent of “meh.” Good hygiene need not accompany intelligence, or so I learned. Leif decided it was easier to let the rest of us change his diapers than be bothered toileting.

By his fourth birthday, we’d made little progress.

I complained to a much younger friend, who gave me this tip: Stop telling Leif he’ll get the candy rewards for using the potty. In fact, stop potty training altogether. Instead, whenever anyone else goes to the bathroom, make a big deal out of it.

Starting the next day, Max and my teen sons yelled out whenever they went to the bathroom and I showered candy upon them with excessive enthusiasm. In less than a week, Leif wanted in on the action.

Try, try again

That brings us to Lyra, my only baby who never wore cloth diapers. The first months of her life were spent visiting myriad health care professionals and preparing for eye surgeries at 6 and 7 weeks postpartum. We took every easy option available when so many important decisions were required of us.

When things settled down a few months later, we realized Lyra was regularly constipated. And while she’s not my first baby to suffer constipation, this was different.

People with Down syndrome, with few exceptions, have low muscle tone. Low muscle tone will delay when babies sit up, crawl, walk, run, hold a spoon or pencil. Low muscle tone in the mouth, and not poor cognitive functioning, is why many people with DS must work hard to speak crisply.

Human intestines, both small and large, have smooth muscles, and are also affected by low muscle tone.

Shortly before Lyra’s first birthday, we learned about Fruit-Eze. A jam-like blend of prunes, dates, raisins and prune juice, Fruit-Eze is a natural alternative to laxatives. Two tablespoons mixed into her breakfast each morning got Lyra going for about three years.

When she was 3, Lyra stayed dry every night for six months. But then she soaked her diaper every night for another six months. Too big for the Fruit-Eze to do its job without giving her more than she’d eat, Lyra was so constipated, her bowels were compressing her bladder.

A specialist told us to give Lyra Miralax, a product widely used by people with DS. At the same time, we learned it is not a true laxative, but works by pulling more fluid into the intestines. Determining the correct dosage took months.

Today, Lyra congratulates herself every time she uses the toilet. She also gives an enthusiastic, “Good job, Mama!” whenever she’s with me in the bathroom. (Do all young children follow their moms to the bathroom, or is it just mine?)

So, yes, potty training has taken longer with Lyra, but not for any of the reasons I might have imagined in the first days of her life.

Like so many things, people with Down syndrome just need more time to reach the same milestones as their typical peers.

The reward is well worth the wait.

The End of an Era: 25 Years of Pregnancy and Breastfeeding

“How does that make you feel?” asked my physician. My eyes suddenly burned and I gulped before speaking, my voice hoarse with emotion.

“Wow, I wasn’t expecting that,” I said, wiping my eyes with the back of my hand.

After 25 years of pregnancy and breastfeeding, my youngest child has weaned.

I also cried when learning to nurse my first baby. Sobbed really. Sitting in a rocking chair, I begged my infant to latch on, tears on my face, breast milk everywhere except my baby’s mouth.

“Just 6 weeks, do this for just 6 weeks, and you can stop,” I repeated to myself.

Before breast milk, there is colostrum. A thick, serum-like liquid, colostrum is newborn super food. It is high in nutrients, antibodies, secretory immunoglobulins (protects mucous membranes), leukocytes (protects against bad bacteria and viruses) and a mild laxative to help eliminate the first stool (tar-like stuff called meconium). It also helps clear out excess bilirubin, which reduces the risk of jaundice, and it establishes beneficial bacteria in the digestive tract.

Whew! That’s a lot of heavy lifting. And because newborns have very small digestive systems, colostrum is super-duper concentrated. A little bit does the job. After two to three days, colostrum’s work is done and the milk arrives.

Whoa, Nelly! If a first-time nursing mother was getting a handle on breastfeeding during the colostrum days, she might still give up when her milk comes in.

Breasts often swell with the arrival of milk, making them taut and cartoonishly large (many a new dad has been told in no uncertain terms to put that camera away). This can make it harder for newborns to nurse, which is exactly what ta-tahs need to get back to a manageable size.

First-time nursing mothers and their babies are both rookies. Sure, babies come with instincts, but many struggle to figure it out. My second through fifth newborns all nursed like champs within an hour of birth. That’s because after nursing my first baby for over two years, I had the hang of it.

Zealots Not Wanted 

Yes, breastfeeding is very healthy for babies. It also helps a mother’s uterus return to its regular size and reduce postpartum bleeding. Long-term, due to a reduction in estrogen production while lactating, breastfeeding reduces a woman’s risk of breast and ovarian cancer.

But not everyone can or wants to breastfeed.

I read an article by a woman who regularly endured quips and comments from strangers, usually other women, about how breastfeeding would be better for her baby than formula. Besides the fact that it was nobody’s business what this woman fed her baby, breastfeeding was never an option for her. Her breasts had been removed years earlier to save her from the cancer they contained.

Other women find it difficult to return to work and pump their milk. I get it. I leaked like crazy the first year of my babies’ lives and can think of many jobs in which I might have chosen formula over the struggle to keep my shirts dry.

And some women just don’t want to breastfeed. That does not make them bad people or mothers. We live in a time and place where healthy alternatives abound.

On the flip side, women who breastfeed their babies in public may also feel harassed by strangers.

An editorial cartoon I once saw sums up the folly of this harassment: mall cops badgering nursing mothers who are seated in front of a lingerie store window featuring a 10-foot-square photo of a bra filled with a buxom bosom.

Currently, laws allow women to publicly breastfeed in 47 states, D.C. and the Virgin Islands. In South Dakota and Virginia, nursing mothers are exempt from public indecency or nudity laws (in effect little different than the other 47 states). Only Idaho has nothing on the books regarding public breastfeeding.

If a woman nursing her baby in public makes you uncomfortable, just move along.

Six weeks later

My midwives convinced me if I nursed my first baby for six weeks, it would benefit his health lifelong. But also after six weeks, nursing becomes much easier. Swelling is usually gone, nipple pain or sensitivity fades as breasts become accustomed to their new role.

And after six weeks, mom and babe are no longer rookies.

But the primary reason why I breastfed my children long term is whenever there is an easier way to do something, I’ll sign up. Breast milk is always ready, the right temperature, and the perfect formulation for your child. Yep, I breastfed because I’m a little lazy.

How long is normal?

The American Academy of Pediatrics (AAP) and the World Health Organization (WHO) both recommend exclusively breastfeeding babies until they are 6 months old. The AAP recommends continued breastfeeding along with appropriate foods until age 1 year or longer. The WHO recommends breastfeeding up to 2 years or longer.

But when does long-term breastfeeding become Last Emperor weird?

Katherine Dettwyler, a University of Delaware anthropologist has researched breastfeeding habits across cultures. According to Dettwyler, large-bodied mammals nurse until the first permanent teeth erupt, or 5.5 to 6 years of age for humans. Most European languages call the first set of teeth “milk teeth.”

I weaned Claude, Hugo and Leif when they were 2 years old because I was pregnant with the next baby. Pregnancy leaves me bone-weary and I needed to maintain as much of my bodily resources as possible.

Jules, who was 8 when I became pregnant with my next child, gradually weaned somewhere between the ages of 3 and 4.

Difference with Lyra

I nursed Lyra as soon as the midwife handed her to me. Red and screaming, Lyra’s eyes were scrunched shut until she began to suckle. When she finally looked at me, I thought her eyes looked “Downsy.” Three days later, her diagnosis of Down syndrome (DS) was confirmed.

Overwhelming evidence indicates that breast milk improves brain health in infants. Knowing DS impacts cognitive functioning, it was important to me to feed Lyra’s brain best by nursing her for as long as possible.

There is also growing evidence that long-term breastfeeding decreases the risk of childhood leukemia. While rare in the typical population, children with Down syndrome have a heightened risk of developing both types of childhood leukemia, particularly acute lymphoblastic leukemia (ALL). This risk is greatest during the first four years of life. (Interestingly, kids with DS also have higher survival and lower relapse rates than typical children.)

Lyra nursed multiple times a day until she was between 3 and 4. Whenever I was away from Lyra for more than 24 hours, I pumped to keep my milk established. Then, for about a year, she nursed first thing in the morning and last thing before bed.

For the past year, Lyra’s morning routine has been to get up, go to the bathroom, then run to my side of the bed, crawl in and nurse. As she has since she was an infant, she wraps her thumb and fingers around one of my thumbs and I close my hand over hers.

This February, when Lyra was exactly 5 1/2, she abruptly weaned. The end of nursing means my hair becomes blonder (hormones do strange things) and I lose a few pounds, things I quite like.

But gone, too, are the sweet morning snuggles with my girl.

This was first published in the Akron Beacon Journal on Sunday, May 6, 2018.