1 in 88

The CDC just updated their autism prevalence data to 1 in 88.  ONE CHILD IN 88 HAS AUTISM.  And because boys are five times more likely to be affected, ONE IN 54 BOYS HAS AUTISM.  


Please, take a minute to think about that.  Think not only about how many children will be diagnosed, but how many families will face that diagnosis. 


And now look at the details of the information released.  1 in 88 is the statistic for children born in 2000.  With the rate steading climbing- 1/150 born in 1994, 1/125 born in 1996, 1/110 born in 1998,  and now 1/88 born in 2000.  The most recent data is for children born 12 years ago. What will the statistics be for children born this year? 

Autism is a life-long diagnosis. There is no cure.  Yes, we know children make better academic gains with Early Intervention services including speech and occupational therapy, but we need to be doing more than putting 1 in 88 kids through extensive therapy for their entire educational careers and beyond.  We need to be working proactively to prevent autism.  If our children aren't enough of a reason, perhaps this is: the cost of autism in the US is an incredible $126 billion annually.

Preventing autism would require knowing the cause(s).  We need unbiased research, funded and conducted by individuals without any connection to possible causes and with no personal gain at stake.  According to awareness group Autism Speaks, "More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined."  And yet, autism research receives just 0.6% of the total funding from the National Institute of Health, even though it affects one in 88 children and one in 54 boys.  

As a teacher who worked with children with autism, I had an intense physical reaction to these new statistics.  I was nauseated.  Heartbroken.  I loved my job and loved my students- challenges and all- and I look forward to moving forward in my career in Special Education.  But I wish life was easier for children with autism.  I wish I didn't have to hold back tears at every annual parent meeting when families were reminded of their child's special needs (and I wish it was okay for me to hug parents when they cried).  I wish I was worried about job security.

As April begins this weekend, so does Autism Awareness Month.  When you see blue lights as a part of the Light It Up Blue autism awareness campaign- everywhere from city skyscrapers to front porch lights- think about 1 in 88.  Consider donating to Autism Speaks, the largest autism science and advocacy organization in the US.  And please, talk about it.  If any other disease was discovered to affect 1 in 88 children and was becoming more prevalent every year, it would be front page news.  As parents, teachers, and citizens, let's at least make  1 in 88 a topic of conversation.

Let's Pretend!

Watching Tye's development through the eyes of an Early Childhood Educator has been an amazing experience.  With each new step, I'm thrilled, especially as I see her developing new play skills.  You might remember my excitement when Tye started putting blocks into a bucket, reaching the second level of basic play.  

Quite a few levels later, a child reaches imaginary play.  First, a child uses actual objects to engage in pretend play.  A perfect example is when Tye received a toy phone for her first birthday, opened the gift, and immediately held the phone up to her ear and said "Hello?"  


The next two stages of pretend play happen so close together that they often appear to evolve simultaneously.  Technically first, a child uses a substitute object in place of an item in play- for example, when Tye held a remote control or block up to her ear and pretended to talk on the phone.  Next, a child uses toys to engage with a pretend object, such as feeding a doll with a spoon.  The subtle difference between these two is that in the first, the action is performed by the toddler and includes only the child and the toy; in the second, the action is aimed at a different recipient.  Tye has been engaging in these two stages for quite a long time, though her playscapes have become more complicated as she has grown.  Most recently, Tye gives her baby doll or animal feelings.  Just yesterday, she told me, "Baby needs cookie.  Baby's belly hurts.  Baby's hungry.  Eat some cookie, baby!"  and later on, "Baby's sad.  Baby needs na-nas," as she held her baby up to her breast to nurse her.

Right around her second birthday, Tye entered the next stage of pretend play by including imaginary objects in her play.  It started with her pretending to hold a cup of coffee and asking me if I wanted some, too, then handing the imaginary cup to me.  We still do this quite often with "coffee" and "cookies."  This stage also includes running away from imaginary monsters, another one we do often, especially at the playground.  The best part of this stage is that this type of play can take place with no toys and can therefore travel easily!  Coffee party in the checkout line, anyone?  


The next stage includes stringing together play into a series of events, such as pretending to drive to the zoo and then getting out to walk and see the animals.  We are just reaching this stage, and I thoroughly enjoy listening to Tye engage in these more complicated scenarios.  


Tye is also beginning to role play, yet another developmental level of play.  In our house, it's not uncommon to hear Tye say, "Tye's a turtle!" or "Tye's a kitty!"  We've also recently heard mouse, puppy, and an even more abstract concept, princess.  During our visit to my parents' home, Tye first pretended she was a princess by wrapping my scarf around her shoulders and walking around slowly, regally, her chin held high.  

She has come a long way from those first block-in-bucket days, hasn't she?

Adapting Learning Materials

You've probably seen shape sorters like this all over.  We have one for Tye.  When she and I sat down to play with it to see if she was ready for it, I could tell she was really interested but not ready to discriminate between so many shapes.  Without any direction, she was overwhelmed and frustrated.  

Out came the teacher in me.  I knew I could use this puzzle, but make it work for Tye's current skill set.  

So I cut cardboard squares to cover two of the four sides of the sorter.

Then I taped them from the inside to cover two of the more difficult sides.

I removed the blocks that could no longer be sorted, so now Tye will have to discriminate between six shapes instead of twelve.  I'm not sure the parallelogram will stay, since finding the side that needs to go in first can be pretty challenging, but we'll try.  I know she can complete the other shapes independently.  

After enough practice to ensure Tye is enjoying the block sorting, I'll remove one piece of cardboard at a time, adding blocks slowly until she can complete the whole puzzle.  Now we have a toy that will grow with Tye.

Friday Favorite- Bedtime Favorites

The only constant in our bedtime routine is that it's always changing.  The main components of the routine stay the same- put on pajamas, brush teeth, apply a calming essential oil, read books, then rock, sing, and nurse to sleep.  Within that routine, though, we go through phases. 

Our newest must-read bedtime book (and really, Tye's favorite book any time of the day) is the book The Little Mouse, The Red Ripe Strawberry, and The Big Hungry Bear by Don Wood and Audrey Wood. 

I first discovered this book when I taught a classroom of two year olds in Germany.  Daily, the majority of the students requested this book, and everyone was captivated by Little Mouse.  The simple plot, in which Little Mouse picks a red, ripe strawberry and can only save it from the Big Hungry Bear by sharing it with the reader, is easy to follow for young readers.  Children seem easily engaged by the text, too, in which the reader speaks directly to Little Mouse rather than telling a story about the character.  Each reading, the child participates in an interaction with the mouse and helps to solve his problem.  Tye, who particularly likes eating the strawberry along with Little Mouse, could read this book on repeat for hours.

After our books, we turn out lights, say a prayer, sing goodnight to Mico, Baby, Mommy, Daddy, and Tye, and then sing a lullaby as we rock and nurse.  Since April, I've been singing the lullaby "Su La Li" to Tye, one that we learned in Music Together and I have now sung for hours upon hours.  Tye's newest infatuation is "Story About Sammy," a sweet children's song I learned as a teacher.  

(I have no clue who these kids are, but thanks to a search on YouTube, you can watch their adorable faces sing "Story About Sammy")


Now as we rock each night, Tye requests "Sammy song" and falls asleep listening to my version of the song, in which Sammy is a girl with a very, very long list of animals she'd like to imitate on her way to the store.  Should I dare attempt to sing any other song, Tye will open her eyes and ask for "more Sammy song."  While I can only guess why Tye loves this song so much, I have a feeling it's because of the simple, repetitive verses combined with animals and their actions.


Many nights in the past, I've brought my phone or Nook into Tye's bedroom with me so I can play games or read as she falls asleep.  Recently, though- perhaps because her second birthday is around the corner- I've been cherishing our time together as we rock and sing.  I remind myself that today is the youngest Tye will ever be again.  Tomorrow, she'll wake a day older, and I never know when our bedtime routine just might change again.  

Reflection

So often recently, I think about what we were doing exactly one year ago.  I was off of bed rest and nesting like crazy... although without a nursery to prepare (since we kept our second bedroom a guest bedroom for the first 10 months), I was mostly tying up loose ends and shopping (mostly the latter- I'm not sure not having a nursery saved us any money).  


One year ago today, I was 39 weeks pregnant and wrote about it in my blog post that day.  I  remember, although it isn't included in that post, that 39 weeks was the point in which I decided we could start doing things that actively promote labor, like long walks and foot massages.  Tyler was so impatient (remember, it had been 5 weeks since I'd been put on bed rest and 16 since my first trip to the hospital with contractions- a long wait!) that he took me to Whole Foods to buy every home remedy for inducing labor we had ever read about.  Let me tell you, vegan eggplant parmesan and pineapple are not the greatest pairing, especially when you have occasional reflux...  


Those of you who have been reading Mama Em from its beginning know that it it took me a while to find the true heart of Mama Em and what it should contain.  Initially, I envisioned only my mom, mother in law, and maybe grandma reading it, so I wrote to them about my day and included little details I thought they might find interesting.  I soon found, though, that there were many other topics that fascinated me, from the Shedd Aquarium's beluga whale pregnancy to Project Runway episodes covering maternity fashion.  As I learned more about healthy living and pregnancy, I shared those topics, too.  My blog began to document not only my pregnancy but also my increasing awareness of holistic parenting.  


What makes Mama Em priceless to me is how it has become a journal.  Through blogging, I've learned the value of documenting my life not just in pictures, as I have for years, but in writing about my current emotions, train of thought, and opinions.  Without that, I wouldn't likely remember how much security I found in Tyler's impatient waiting for the birth and how that showed me he was emotionally ready to become a father.  I would have forgotten just how hard that waiting was for me, too, had I not posted about it almost every day for several months (you poor readers!).  I would have forgotten the details of the day before Tye was born, like the way the zipper on my fleece swayed side to side with each step as we walked to the dog park.  And I'm forever grateful to have recorded certain memories, like Tyler's brilliant takes on pregnancy. 


Through blogging, I've also been reminded of the value of journaling for self-reflection.  In college, our Education professor required short daily journal entries about our day student teaching in the classroom.  This exercise taught me to reflect on my day and how my experiences wove themselves into my training.  In the same way, blogging has, for me, become an opportunity for me to gather my thoughts in one place and reflect upon motherhood.  I believe writing about my pregnancy, from the joys to the fears, helped prepare me for the birth.  Now, writing about parenting provides me time to contemplate parenting philosophies, how they affect children, and how they might affect Tye.  I also draw (sometimes strange) parallels that reinforce my attempts to truly appreciate each moment of every day and parent with love, joy, patience, and faith.  Blogging has become therapeutic for me.


Looking a pictures of me one year ago, I can hardly remember what it felt like to have such a huge belly, to feel Baby Girl moving around inside of me, to feel the almost-constant contractions squeezing around my tummy, to be anxiously waiting for such a life-changing event.  Thankfully, I have all those memories and emotions in words, and I can go back and read about each day.  Someday, perhaps Tye will want to read about our journey into life together.  


As I've said before, I'm amazed anyone besides my mom reads Mama Em.  I love knowing that there are others out there, though, actually interested in what I write and even engaging in two-way conversation with your comments (which I love).  You provide motivation to write and to continue to document my journey into motherhood.  Thank you for listening to me for the past 19 months.

My life, according to poop...

When I taught preschool in college and later in Germany, I focused a great deal on toilet training.  When working with parents who were toilet training, their curiosity about their child's bodily functions was amazing.  They wanted to know the exact times of elimination, the location, and who initiated the event.  Communication between caregivers was important to maintain consistency, though, and I always understood how crucial toilet training was to those parents.  Life changes after diapers.  And so, we talked pee and poop every day.  I thought we talked about it a lot.  Looking back, that cracks me up.


When I began teaching students with autism, many of my students were on special diets and/or had digestive issues that so often accompany the diagnosis.  Since many of my students had difficulty communicating their daily elimination to their parents, it was again my responsibility to relay the vitals to the parents each day.  However,  simply listed a #1 or #2, the time, and the source of initiation was no longer acceptable.  So many of my students were on medications or special diets that affected their bowel movements that parents wanted to know just what type of #2 was produced.  Was it solid?  Was it large? Was it green or brown? (or purple? and yes, I had that conversation) And the thing is, because I knew the journey each of these families was making and why each question was asked, I understood the significance.  Those details, as gross as they may be to the unrelated person, were important to the child's treatment, so they were important to me.  


By the way, I knew all these details because I was in the bathroom with the children, changing them, so often.  Changes are a great learning opportunity in which we practiced communication, self-help skills, and fine motor skills.  Some days, I could swear every kid waited until they were working with me one-on-one to poop, then let it all go while they were on my watch, leaving me to change six loaded diapers in five hours.  I had no idea when I was in college how much of my teaching career would be spent either discussing bathroom patterns or changing diapers, but when doodie duty calls, I answer.  Teaching Special Ed, I thought I talked about bodily functions a lot.


I was reminded of those conversations this weekend when a visit with friends, whose son is three weeks younger than Tye, turned to the babies' bowel patterns.  Parents love their children so much that even their poop is worth talking about.  We are now those parents.  I talk about my daughter's poop.


Now that I've cleared the air on that topic (hehe), I thought I'd update on our ECing because, like I said, I talk about my daughter's poop.  We started using Elimination Communication with Tye when she was two and a half months old, and since then, we've been having good success with the method.  We aren't diaper-free, but I'm really happy with where we are.  Every time we change Tye's diaper (every 45-90 minutes, depending on the time of day), Tye sits on the little potty chair in our bathroom.  We've had at least one caught pee (in the potty) every day, even when traveling (then it's in the sink).  When we're home, we usually only have 3-4 wet diapers all day.  This makes laundering our cloth diapers a lot easier!  


The biggest success for us has been in catching poops.  Aside from the time I was pooped on in public and one full diaper on vacation, Tye has pooped in her potty for every bowel movement for the past few months (and probably 98% of her BMs since we started!).  Sometimes I see or hear Tye getting ready to go (can I tell you how cute and dainty her grunts are? I love them!) and rush her to her potty.  Other times, when provided a potty-tunity, she takes advantage of being on the potty and goes.  A few times, she has yelled at me when I try to put on her diaper after a changing, so I give her more time on the potty and then she goes.  Can I tell you how great this is?  When she goes in the potty, there are no blowouts, no leaking, no diapers to rinse the poop off of.  It changes diapering completely. 


I haven't changed a poopy diaper in almost a month.  I realized the other day that I'm changing fewer poopy diapers now than I have since I was a sophomore in college.  And yet, here I am, talking about poop.  Because I am that person.  I talk about my daughter's poop.  The other day, I texted Tyler a photo of Tye's poop.  Yup.  Some things never change... Or they just get better with technology.  


Poop.

Seeing the blessings

Being an Early Childhood teacher with a background in child development is a mixed blessing and curse.  It means I know the major developmental milestones, their average time frame, and their order of appearance.  The most important detail about each of those is that they are all averages.  Each child grows at her own pace, in her own way.  That can be so hard to remember sometimes.

For example, I'm quite perturbed at the moment at Tye's lack of a developed pincer grasp.  She is close, but she doesn't use it well or often.  Is it simply because I don't provide many opportunities to practice because items that tiny are choking hazards?  Or is it because the items she's trying to pick up- slimy banana, mushy avocado- are challenging pincer-grasp materials?  All this concern, and Tye's still within the realm of normal.

I'm much less worried about Tye's mobility, even though so many kiddos her age are crawling at high speeds.  Some of that is simply because I am trying to enjoy every day I have before my job difficulty increases tenfold with her locomotion.  Perhaps it's also because Tye is so very, very close to crawling.  She scoots all over the place on her belly using a version of an army crawl, arms and legs propelling her across the hardwood, tile, or rug with her belly hugging the floor. Yesterday, she scooted herself backwards into a corner, looked at me and chuckled, then pulled herself away and back to her toys.  She's a good example of enjoying the journey as much as the destination as she grins at the act of moving herself.  She's also good motivation to keep my floors nice and spotless, because otherwise her clothes rubbing on the floor will show the dirt I've not yet scoured.  

Tye is also pulling herself up to stand next to items that are coffee-table height.  With that comes the need to babyproof beyond just outlet covers.  I'm sitting on my couch writing this, looking at the bookshelves on either side of our fireplace in front of me.  Yup, there's a lot of stuff we need to move- the reed fragrance diffuser on the bottom shelf, the potted orchid on the second shelf, the Wii with the power cord hanging within reach.  And I should probably dust behind the books, because they'll be cleared by little hands soon enough.  

Also relatively recent for Tye: the application of the law of object permanence.  She has loved peek-a-boo for over a month, but now she applies the rule to situations as they arise.  Most notably, she now knows where to find her favorite food sources even when they're hiding under my shirt and will reach in to grab them when she's hungry or tired.

Another developmental area that doesn't concern me is play skills.  While most of us don't recognize the very earliest stages of play because they happen so early and usually effortlessly, my experience teaching students with autism provides me with heightened awareness of the most basic skills.  Because children with autism often have very minimum functional play skills, we had to start at the beginning.  The first play skill to develop is taking out- everything from removing items one at a time to dumping.  Tye has that one down, although it's one that kids love and makes them famous later on when they remove every pot and pan from the cupboard or dump out the entire box of cereal onto the kitchen floor.  

The next developmental step is to put in, which starts with simply putting an item into a container.  This step is a special one to me because it was the first play skill we taught most of our students (most came in knowing how to dump all too well).  Two days ago, Tye started putting her toys into the empty cardboard oatmeal container.  Stage two reached.  (With these developmental stages of play, she'll continue to practice each previous stage as she reaches the next- for example, she'll need to take an item out of the container to put it back in; for the rest of her life, she'll use that skill of "taking out" to access the materials she needs, like crayons out of a box or blocks out of a bucket.  The skills build on each other, utilizing previous skills as she advances.)

Watching a tiny human develop is amazing.  I'm amazed by Tye's constant growth and especially intrigued by each new milestone, whether she reaches it ahead of or behind that designated "average" age.  She's my own little longitudinal case study.  Even when her growth is further behind in that range of average, I find the blessing in being reminded to enjoy each stage while it's here and focus on each step- or army crawl scoot- of the journey.

On blogging...

I haven't always been a blog reader. During the original blogging craze, I heard bloggers described as people who spend their lives writing about their lives, and I was certain that anyone who lived in front of their computer had little interesting to share. The few blogs I came across were just that, and so I decided that blogging and following just weren't for me.

A couple years ago, while teaching in Northbrook, the social worker on our team stumbled across a blog kept by the parent of one of our students. I read several posts and found it charming, insightful, and witty, and because much of it revolved around the student I taught, I found it highly interesting. And yet, I felt somewhat uncomfortable reading it because it was such a personal view into the family's life. Reading it felt almost like eavesdropping on a family conversation to which I wasn't sure I was invited. I believe I complimented the mother on her beautiful writing at the time, but I decided that our communication should happen in modes that encouraged two-way dialogue, like the communication notebook that went home every night.

As a Special Education teacher, I always worked very hard to establish deep connections with all of my students. Even in a population known for difficulty showing and interpreting emotions appropriately, a strong relationship can motivate a student to work hard when little else can. With some students, this bond takes months of effort to establish. With others, it happens easily, as if you just know that this child would have been your own best friend had timing been different. One of my students in Northbrook was like this. She was a tiny, sensitive-skinned girl with a beautiful mess of brown hair that seemed as big as she was some days. She ate the foods I liked, like spicy curries, salads with dried cranberries and blue cheese, and salsa by the spoonful, and we preferred many of the same activities- finger painting, swinging, cooking, and walking the therapy dog. She wore hand-knit dresses and home made coats that made me enviously wish the same items were available in my size. It was her mother who kept the blog, beautifully intertwining stories about her daughter's growth with her passion for knitting intricate works of wearable art.

When she left our program, I missed this student like I would miss a friend. I began reading her mother's blog daily- the first I ever followed. I chuckled when my little friend used scissors to take some length off her own hair, cheered on her progress with her private speech therapist, and literally screamed with joy when she was accepted into an excellent new school... but I never commented on the posts for fear her mother would think, for any number of reasons, that my continued interest in her daughter was somehow crossing the line. Two years later, she posted her first video of her daughter. You know how a picture is worth a thousand words? I think a video is worth several million, and I just had to comment on it. It was a big move- I was loosing my anonymity. Much to my relief, instead of posting about how creepy it was that some teacher never stopped following her child, the mother wrote me a friendly email in response to my comment. I was grateful to receive it, to re-establish two-way dialogue, and to be accepted as a blog follower.

Yesterday, I checked my email and discovered that I had a comment on one of my own posts- the student's mother, Jen, asked for my address so that she could send something to Tye. I checked her blog for her email address, and when I did, I saw her most recent post, titled "Bucktown Baby Dress." As I read it, looking at the photos of itty-bitty patterned stitching, my eyes welled with tears. Could it be for Tye? Really? I started following Jen's blog, the first I ever read, because I loved her daughter. Now I have my own daughter, and my own blog, and I'm reading a post about a beautiful dress that might be for my daughter and writing my own post about both of our daughters. I've decided that blogs can be pretty great after all.