LIFE IS A SPECTRUM

Fetal alcohol spectrum disorders (FASD) is an umbrella term describing the possible effects that can occur in an individual whose mother drank alcohol during pregnancy. FASD affects one in 100 infants each year, yet is 100 percent preventable. Some of those possible effects can include seizures, facial and other physical malformations, and developmental delays and other neurological problems.

fasdFL

And it's 100 percent preventable.

How often do you get those kinds of stats related to birth defects?

I received this information this week in an email about a Community Action Summit taking place here in Tallahassee, starting tomorrow, in support of a statewide campaign, launched by the Florida Developmental Disabilities Council, to eliminate FASD. "“Florida Fights FASD" seeks to engage and educate Floridians about the dangers of alcohol consumption during pregnancy and, ultimately, to reduce the number of children born with FASD in the state.

I was discussing this issue with my Mothers of Preschoolers (MOPS) group this morning, and quickly became aware of how much more complicated an issue it is to solve FASD than I had at first thought. At face value, it sounds simple: Get pregnant women to stop drinking. How hard can that be?

Then one of our moms, who used to work as a bartender, told us how hard it was for her when clearly pregnant women would come to her bar and drink heavily. HEAVILY. She wasn't allowed to refuse them service on the grounds that they were pregnant, even though it went against every fiber of her being to see them consume round after round.

Should we make it illegal to drink while pregnant? After a very short discussion, it became clear that that was impractical. Who's going to enforce this law? What if you can't tell? It's more dangerous to drink in the first trimester, when most women don't show. Should women be forced to wear a scarlet "P" as soon as they get a positive pregnancy test? Clearly not.

Maybe greater education at he OB/GYN level should take place, during prenatal care. But then you find out that some of the women most at risk never receive prenatal care. Never.

The goal of this week's summit is to debate and brainstorm these issues and ignite “torchbearers” for the cause. These torchbearers will serve as community advocates and take FASD prevention activities and public awareness messages back to their local communities and/or share information with members of their organizations. Summit attendees will participate in an educational forum where expert speakers will lead discussions about the prevalence of FASD and what can be done to combat it.

The Summit is being held at the TCC Capitol Center, just west of the Florida Capitol and next to the Brogan Museum on Kleman Plaza. It begins with an evening welcome reception on Wednesday, Oct. 20, from 5 – 7 p.m. The main event will be held Thursday, Oct. 21, from 9 a.m. – 3 p.m.

If you have any questions or need additional information, please don’t hesitate to contact Rick Oppenheim or Emma Washington at (850) 386-9100, roppenheim@rboa.com or ewashington@rboa.com.

 

Today is the last day to officially register for the summit. To register now, visit http://www.fasd-fl.org/summit-registration.aspx.

If you can't attend, but you're interested in getting involved with this cause, you can join the summit online. Just click the “Watch us Live!” link at http://www.fasd-fl.org/summit.aspx and you’ll be tuned into all the speakers, panels and brainstorm sessions.

Anyone have any great ideas to tackle this issue? I'd love to hear your thoughts ...

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A Setback for the Cause...

I heard about this study on CBC the other day:

http://bit.ly/9MtHKL

Toasting babies ... and toasted mamas.

It's so true. At the moment, the Stink Eye is the best weapon we have. And working against us, we have shows like Mad Men (totally awesome show, I should add) where gorgeous women like Betty Draper are knocking back cocktails and lighting up every other scene while pregnant.

I know the answer is education, rather than more judgment and punishment, but education is so ... hard. And time-consuming. And not cool.

And when women are drinking, they're probably thinking, "Hey, this is easy ... and quick ... and fun and cool. What time's Mad Men on?"

I wish I could tell them: Parenting a child with developmental delays is hard and time-consuming and you very very rarely feel cool. And you'll very very rarely have time to watch Mad Men.

At least I have the comfort of knowing there was nothing I could have done to prevent my child's autism. I can't imagine how heart-breaking it must be for a mother to realize that she could have prevented her child's disability if she'd gotten help sooner. Even more heartbreaking is the fact that a lot of these kids end up in foster care and they're lucky if they end up with someone strongly advocating for them.

So ... until we have something better, the Stink Eye it is!

Booze and babies

It's funny you should mention this, because it makes me think of something a friend told me not long ago. She and her husband were at a Reds game with her husband's best friend and his boozy wife who was about 5 months pregnant at the time. All night long, the pregnant woman was tossing back drink after drink, and nobody said a word to her about it.

I just don't understand how they could sit back and watch that happen. If I'd been there, I KNOW I would have bucked social convention and said something. And the woman would have countered with the argument that women used to drink and smoke during pregnancy all the time. And probably she would have kept on drinking. But I bet it would have made her uncomfortable enough to at least think about what she was doing, and maybe tone it down. And maybe even stop. Who knows.

I wish there were a better solution than just giving someone the stink eye to curb the destructive tendencies. Addiction complicates so many things.

Total 3 comments

Albert Einstein – who many believe was on the autism spectrum himself – once said, “Imagination is more important than knowledge ...”

S_batmanark2

Most children don't have to be taught to imagine; play is as natural to them as breathing. They push a car – or a block that they imagine is a car -- along the floor and say "vrroom, vroom" as soon as they can utter a sound. They cuddle baby dolls or pretend to eat or drink from toy cups and saucers. As they play at these things and imagine, they communicate, they connect with people, and they practice life skills.

Imaginative play is typically a challenge for kids on the autism spectrum. When most kids were starting to pretend, Billy was putting together the wooden track on his train table or linking up the trains and driving them along the track. When he played with blocks, his favorite game was "dominoes," in which he lined the blocks up one after another and knocked them down.

S_pyramid

Before we knew better, we'd try to force him to act out stories with us. We bought herds of plastic Little People, toy soldiers, Disney characters, astronauts, Thomas trains and ark-loads of plastic animals. We have two doll houses, three barns, an entire plastic amusement park, a medieval fort, a Mars rover, a space shuttle, an elaborate toy kitchen, two play houses, and yes, a Noah's ark.

The lesson we learned: You cannot buy a child's imagination. At least, not Billy's.

The second lesson we learned: We can buy Willow's imagination. She jumps on any new toy like a duck on a June bug.

Following the Floortime model of “following his joy,” we invested, instead, many hours lining up both trains and blocks. Slowly – and I mean slooooooowly – things started to change.

S_rocketshrek

At first, we were able to add a few minor “playful obstructions,” little challenges that complicate the game: Something is blocking the train track; the dominoes travel over and under objects, etc.

Billy still does a good bit of echolalia, repeating lines from books and TV shows. The next development step he made in imaginative play was to act out, in small ways, lines from books or TV shows. One day, several characters had a “jumping contest.” On another, an astronaut had a race with a pig. I couldn't have been happier if he'd composed a symphony.

So this summer I've made a point to spend a certain amount of time each day “practicing” imaginative play. Scheduling it might seem to defeat the purpose of following his joy, but there's method in my madness.

In the morning, I'll listen to whatever lines he's repeating. Then while he's napping, I'll try to set up the scene of that book or TV show with his toys.

For instance, one morning, he was stuck on “Where the Wild Things Are,” understandable since we'd read that as a bedtime story the night before.

While he was napping, I rounded up the characters from the story – or the closest I could approximate in our menagerie of plastic pets – and laid them out on the dining room table. Note: I moved this activity out of his play room so that he wouldn't be distracted by other toys while we were busy with our imagining.

I found one of his Little People to be Max and a taller female doll to be the mom. I found a dinosaur, a Shrek and a couple of other “wild things” and lined them up as well. I stole the bed from the dollhouse and dug out the toilet-paper-roll-boat we'd made in craft time the day before. Then I got a plate from the toy kitchen and put a plastic chicken leg on it, because as every parent knows, the story begins and ends with Max's dinner.

Billy surveyed all this with a suspicious eye. He suspected there was a lesson in it somewhere. “No circle time,” he informed me -- “circle time” is the way he describes any particularly boring lesson-like activity.

“No circle time,” I agreed. “This is about Max going to see the Wild Things.”

His eyes lit up. “Wild things!”

So I proceeded to tell the story with the characters I had laid out. I stopped to let him fill in some of he lines. His favorites: When the mother calls Max “wild thing!” and when Max threatens, “I'll eat you up!”

When we got to the part where “a forest grew” in Max's room, I felt a bump down at my thigh. Willow was holding a small house plant. I cannot say for certain that she was suggesting we use it for the forest, but I'm so used to things coming so easily to her (see her "Jurassic BooBoo" video for a masterpiece of imaginative play), that I didn't even blink at a 15-month-old making this leap. “Good idea,” I simply told her, and added it to the scene.

After a couple of rounds of Wild Things, Billy was getting a bit bored. At the next pause in my recitation, to my surprise, he changed the story.

“We have to find Saturn!” he told me and flew Max around the table.

“Saturn?” Then I realized that he was switching to his favorite episode of Little Einsteins. “No, Billy,” I corrected him, “This is Where the Wild Things Are.”

I tried to get him to bring Max back so that he could get in the little boat and sail to the window sill where Shrek and the plastic alligator were waiting. Completely forgetting that the point was for him to imagine something NEW, I was slightly irritated that my carefully laid out world wasn't getting used.

He sighed and came back to the table. We walked Max through his paces, sailing him back home to where his dinner was waiting for him. “And ...?” I prompted Billy.

He picked up the plastic chicken leg and bonked the mother on the head with it. The doll fell over. “She's dead,” he informed me, and hopped on his scooter and pushed off. I tried not to take this plot twist too personally.

Willow picked up the Mama doll, gave her a little kiss -- “Mmwah!” -- and put her in the bed. “Seepy (sleepy),” she said, pulling up the covers. She certainly is.

I learned an important lesson: Let Billy do the reciting. If he takes one look at the Wild Things set-up and wants to act out the Little Einsteins with Shrek and the dinosaur driving the Rocket, that's great.

I've gotten a little better at play time over the weeks. We used the toy barn and animals to act out the story Click, Clack, Moo. We used his Thomas trains and Little People to pretend The Little Engine That Could. And we've acted out Noah's ark ... with Batman.

And we made a Little Einsteins “golden pyramid” out of cardboard that Billy loved as much as any store-bought toy. He immediately swam all his Finding Nemo characters in and around it.

In fact, we find ourselves in a new development stage. While not inventing completely new stories yet, Billy is mixing and matching his favorites joyfully. A cow might say, “I think I can, I think I can” and a train might travel to the land of the Wild Things. Batman moves in an out of diverse roles with the ease of a plastic Lawrence Olivier.

On Monday we're going to make totem poles out of cardboard tubes, inspired by another favorite Einsteins episode. I wonder what Batman will make of those...

Reader Comments

pretend play

So great that you put in all that effort...now I feel like a slug! Sounds like Billy and Audrey have similar loves...Wild Things and Little Einsteins. You do such a great job with the imaginative play. I find it so hard....I guess I'm rusty after like 30 years away from it! I literally have to watch other kids play to get ideas...they come up with some weird stuff!

From Amanda on Imaginative Play

Lynn, I'm on the same page, my friend. I was amazed to find how lost I felt the first time I sat down to do any imaginative play. I found it difficult ... and boring. I thought, "What happened to me?" As a kid, playing Barbies and "Let's Pretend" were my favorite games.

But my lack of skills in this area is one of the big reasons I started acting out his favorite books and TV shows: It turns out that BOTH of us are really more comfortable with a script :-)

Maybe over time, he and I will both advance to the next development stage!

pretend play

Amanda, there are two things I always love about your posts: 1) They're always full of hope. Always. Even when you're frustrated. That's awesome. 2) You approach Billy's development in the most creative ways! I'm taking what I'm learning from you, and applying them to my own boys.

It's just nice to have the reminder: Work with your kids, and help them be who they are. Nudge them, sure, but let them be themselves.

Kudos to you. Great post.

From Amanda on Hope

Hi Maura,

Thank you so much for your kindness. Nothing makes me happier than to think what I write reflects hope, because that's certainly what I feel: hope and joy. My kids drive me bananas sometimes too -- I'm not for a second pretending that every moment is full of hope and joy. We have plenty of tears and meltdowns -- and that's just me -- but I try to remind myself constantly, "We're ALL on a spectrum." Whether it be a spectrum of joy, normalcy, contentment, fulfillment, etc. We can't expect to live at the giddy end of the joy spectrum 24/7, but I'm happy to report that with each passing month, we spend more time there.

And it's a good point you make about certain ideas being good for ALL kids. I love the book "The Out of Sync Child Has Fun," because it has all kinds of ideas and games for kids with sensory processing problems -- but their normally developing siblings and friends will love all the games just as much. I joked to my sister once that most "therapy" for autistic kids is based on sound parenting principles; it's just "extreme parenting:" you have to do more of the same stuff, more of the time.

I hope you and yours have an awesome weekend!

A.

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