Due Time

Where do I begin? This story begins a whole year ago, almost exactly, and it has taken me all year to get the closure I required to tell it.

Now, Emma and Ethan are 5 years old and almost finished with kindergarten! It was the blink of an eye...yet it feels like a hundred years since they were at home with Mimi or Nannie and Papaw during our work-days, a hundred years since they were too young to go to school young enough to stay home.

They have learned so much, and I am so proud of the amazing things that both of them are doing. When they were in pre-school, I was in total disbelief when Emma's teacher told me that reading was the expectation in kindergarten. I thought, no way, folks. That is not a reasonable expectation. Was I reading in kindergarten? I think I might've been sounding out words, but I couldn't really read yet. I said I'd eat a shoe if my kids were reading in kindergarten. They learned a few sight words in pre-school, but is sight word memorization really reading? Ehhh...not yet, I thought. Now, here they are with the majority of kindergarten behind them, and they know over 50 sight words each. Emma knows closer to 75 sight words. She has a memory for details. She is a little fact-repeating, song artist-naming, movie-quoting genius. Ethan has more of a mind for reasoning and analyzing. He's more of a theory-posing, problem-solving, deep-feeling genius.

I've been told to break out the salt and pepper for the shoe that I need to eat. Sure enough, the sight word books started coming home, and Emma and Ethan could point to the words and know what they said. One at a time, they take the words in. The pictures are very leading, of course, to help them predict what the words say, and they also help them to process what the words just said. It's such an amazing thing to watch: my babies are learning to read! I don't remember learning sight words except for the ones that were impossible to sound out, but it's working. It's working like I never believed it would. I don't know if I can really eat a shoe, but I stand corrected. I should eat one bite-by-bite with a fork and knife because they have exceeded my high hopes for them in the books department so far.

While it has definitely been a mostly-positive experience, it has been an especially jarring, heart-wrenching transition for all of us.

I couldn't believe it when I realized they were eligible to enroll in the pre-school program, the one my sister and my friends who have kids loved so much. I was shocked! No! Not yet! They're still three! They're barely potty trained! They're still toddlers!
I guess I was a little excited for them to go to preschool...and I knew that my mother was probably eyeing the finish line for her full-time babysitting career. But, they were still only 3 years old! I definitely wanted them to go to pre-school like Rodney and I did and like all the other kids I've known. I wouldn't want to skip it....

Then, I learned that public pre-school was an offer that came with very specific conditions in our district. A child could go to preschool if his or her 4th birthday fell in the given window of time for that year. Emma and Ethan's birthday was two weeks in to the window of opportunity. Their birthday wouldn't be in that window next year. This is when it dawned on me that Rodney and I were being given a now-or-never choice, not a now-or-later choice. I couldn't help but be pained by the fact that if they hadn't been born two and a half months too soon, they would've been excluded this year and eligible for preschool the following year. If I had just held on for two more weeks, my babies would've been able to remain in their safe and loving cocoon for another year. They'd be on the older end of the age spectrum of their class, like I was.

So I enrolled them in to pre-k with the thought in my mind that Emma and Ethan could have a 2nd year in pre-k. I thought that would be the perfect solution and reckoning for their pre-term birth date. About half-way through, I started voicing my intentions, and I was met with firm opposition. I was told in no uncertain terms that a 2nd year of pre-k was not allowed under any circumstances. I thought...surely if I explain, the administration will understand, and my kids will be compensated for the discrepancy in their biological developmental stage and their untimely birth date. I'm in education; I know the people want what's best for the children. We all do. They'll listen to reason.

To my great disappointment, that was not exactly the case. There was no law requiring this allowance, no allowance for human discernment of the facts. Since there was no mandated use of judgment, it was withheld.

I couldn't let it rest; I was dumbfounded. I just knew there was some mistake. I must just not be communicating this clearly or in the right way. I was so emotional. So I decided to write a letter in which I would clearly explain the problem and plead for an executive decision. All I could think of was what would become of this decision and what it would take to get what I felt was owed to my children. It wasn't their fault that their mother was not able to carry them to full-term. They hadn't even the ability to suckle or even the ability to maintain their own bodies without the synthetic womb that the doctors provided for a whole month. They had invasive and traumatic tubes and iv needles and monitors.  If there is someone to blame for that, it's me, not them. The superintendent for our district responded to my request: "I will not set a precedent for a non-mandated program." That's it, then. He wouldn't help us.

They were cut short in the womb, and now they were being cut short in the home.  If I had only done this, or not done that....

During my pity party, it hit me like lightning. I was complaining; I was being perceived as a complainer.  How could I be seen as an ally, a team-player? Then, I wrote another letter. I offered a solution that I thought was pretty simple, ridiculously simple, but also perfect: A proposal that would benefit the preemies of the future. I proposed that there be an allowable exception based on medical emergency and premature birth, a motion to allow delayed enrollment. I had to laugh at myself a little as I made out a mock form with the relevant information like the expected due date and the actual date of birth and how much time was required in the NICU. I even included research about the rate of repeated-grades for prematurely born children in elementary school. Then I made copies and sent them to every educational leader in my district.

I received timely responses from most that resolved the issue with tried and true slogans for all educational conflicts and disputes: "Thank you for your interest and commitment to your children's education. We must all work together to educate the children of our communities. We believe in our educators, and we believe in our students."

I hung my head. Maybe I've gone way off the deep-end with this whole thing. Am I a crazed extremist? With my faith in my sanity and my faith in humanity in shambles, I took a step back from this madness. I've done my part. I've blown the whistle.

They now know that preemies are being negatively affected, that more preemies survive with modern science--and then they are all nailed to the wall by their inaccurate birth dates when it comes time for their first introduction to school. 

I, for one, will go to bed at night knowing that I did what I could. I transferred that burden to the appropriate powers.

I couldn't help but think of Nate, the baby across the NICU hall 5 years ago who was only 1 pound at birth. His arm was the size of my pinkie. He had multiple complications and surgeries. I remember seeing his parents in the elevator tearfully rejoicing the fact that he had finally developed enough to accept his mother's milk. He was born right around the same time my kids were born, but even more prematurely. That means Nate's parents are being faced with this same issue today as he enters school. Nate will have to go to school when his birthday says...even though it was 4 months too soon. If Nate can do it, my kids can do it too, I thought. If Nate has to do it, then why should my kids be the exception?

I was finally able to lay the matter to rest in the name of Nate.

A few months later as I attended the last meeting of the semester for a "Leadership Group" at work, I met a person who changed everything. 

I listened as we interviewed our guest speaker, Representative George Faught. He was very down-to-earth and seemed to care about being an effective public servant. He spoke of personally digging a post hole and setting a mailbox for a woman who complained when her mail was no longer being delivered due to her blocked house-box. Did she ask him to come dig a hole in her yard and put up a mail box? No, she complained. He helped her by his own free will, no mandate needed. Then, he went on to strongly encourage us to reach out to our legislators if ever we had an issue or had something we cared about--even just a little bit cared about--that we should reach out and affect change. He said that it's incredibly rare to have a concerned citizen reach out about an issue, and sometimes, that's all it takes.

I was going for it. "If someone did have an issue, what would you say is the most effective way to reach you? What I mean is...what method would you say is most likely to get your attention as a serious matter to consider? Formal letter in the mail? Email? Phone call? Face-to-face?"
He said, "Any or all of the above would get my attention."

I couldn't help but hope this was fate.

"Ok, well, I do have an issue that I care about, so I guess I'll be writing, emailing, calling, and stopping by if that's okay."

After the meeting, he stayed back and asked me about my issue, and I talked for the first time out loud about it outside of my intimate friends and family. I had been fighting this battle as privately as possible, so as not to contaminate my purpose with my frustration. I didn't want to have a negative effect on the outcome by speaking too much too soon. I kept the matter between myself, close friends and family, and the powers that be.

He said, "Apathy. That's why no one has acted. I think I can help you with just a little bit of legislation."

I can't even remember what I said for the resounding choir of angels singing in my head. He gave me his email address and told me to send him all of my letters. I rushed right home and did it immediately. "Wow, you are really on the ball, LeeAnn. I'll get right on this, and I'll keep you posted."

I never heard back after that. That figures, I thought. I refused to think of it any further. I had exhausted all of my energy for the topic, entirely spent.

The conclusion of this saga came at a most unexpected place: at the parade our daughter was marching in.

We were lost from our supposed place in the line-up and were 4 blocks out of our way. If not for that frustrating and tiring mistake, I never would've gotten that tap on the shoulder.

"Don't I know you? You were concerned about pre-k and kindergarten enrollment?"

"Yes...Hi!"

"The bill passed! The bill just passed, didn't you hear??"

I didn't even know there was a bill. I thought it was forgotten or thrown out. I couldn't hold back the tears. I hugged him and thanked him and cried all the way to our spot in the parade line.

On April 5th, 2016, Governor Fallin signed HB2404 that amends the age restriction policy to include the allowance of exceptions:

An Act relating to schools; amending 70 O.S. 2011, Section 1-114, which relates to free attendance at public schools for children of certain age; requiring State Board of Education to promulgate certain rules; and providing an effective date....
BE IT ENACTED BY THE PEOPLE OF THE STATE OF OKLAHOMA:
The State Board of Education shall promulgate rules that create exemptions relating to the maximum age at which a child may attend half-day or full-day early childhood programs.

My faith in humanity and in my sanity has been restored because one man listened and cared. One man gave his time and energy and helped the future preemies and other children who are deemed exceptional in Oklahoma. It just makes me want to sing!

"Can I get a Hallelujah? Can I get an Amen? Feels like the Holy Ghost runnin' through ya..." when the preemies get what's due to them!

Hallelujah and Amen!

Mr. Repair Man

Ethan loves getting dressed up in his costumes. It's the most frequent type of play for both kids. Lately, Ethan has been all about the tool man costume. He has a bright orange hard hat, a tool belt, and a tool box with all kinds of tools in it.

He was on "the repair man" for at least 3 weeks. He stayed in character for most of the day, fixing all of our doors, windows and air vents. He was very serious about it. He asked me what my other name was besides Mom. My name has always been tough for little kids to say. I think it's because there is no consonant sound in the middle, that mid-vowel shift, and the uncommon stress on the second syllable instead of the first. "Lee'-uhn," he'd say. I didn't like him to call me by my first name because I want him to use formal address with adults elsewhere. So, he agreed to call me "Ms. or Ma'am."

Specifically, he would make sure I understood from time to time that he was not Ethan but the repair man. I understood. He'd slip and call me Mom but quickly correct himself' "--ma'am." The repair man act went on for so long that I almost worried a little bit. I corrected him when he called Mimi by her first name as well, and I threw in an additional reminder: "When you're pretending to be an adult, you can't forget your manners and you still address real adults respectfully."

"Okay, ma'am."

He loves helping with anything and everything. He offers solutions to any minor problem we have, and he has some good ideas! I tell him so, and he gets so proud of himself. Good boy. But he sometimes forgets that he's still just a little boy. He gets a little too big for his britches. I'm always reminding him that he's not the boss of other kids, and he's not the boss of me. "Are you the boss? Or am I the boss?" I ask him.

"You are," he always concurrs. 

However...the repair man kept trying to convince me that since he was "a professional worker," he could now tell me what to do. So, I had to point out that, actually, he worked for me since he is working in my home. "Sorry, guess I'm still the boss after all..."

He didn't like that, and he walked away looking somewhat defeated for the time being. 

We decided to go to the park, and the repair man said he'd like to go too. He insisted on wearing the whole get-up to the park. I let him wear it in the car, but I started workin' on him. "Okay. Well, that sure will be nice to have an adult to visit with me on the bench while Emma plays."

"Yeah...." The repair man looked to be slowly drawing his conclusion. "Umm...I think I will do some work on the play ground. The slide probably needs fixing."

Nice one. 

Hmmm.... "Well...there are no repair men allowed on the play ground...only kids. You'll have to go back later after the park is closed." 

Gotcha.

"Oh...well, I think I hear your son, Ethan, in the trunk. He was hiding. So, I'll wait in the car when we get to the park, and Ethan can come out of the trunk and play."

I laughed out loud for several minutes, I bet.

Well played, Mr. Repair Man, well played.

State of Mind

Since Emma has started occupational and speech therapy, Rodney and I have been learning about all kinds of therapy methods, tools, and equipment. Emma even gets to bring some of it home. A friend whose child is further down the therapy road has given me the heads-up on a few things which has been helpful. He even suggested early on that when we get to borrow equipment, we should use it on Ethan, too! So we do! Mommy even uses it sometimes. I had no idea that Emma's therapy journey would allow and require so much of our own direct involvement as parents. I just thought Rodney and I would be taking her to appointments and speaking with therapists about how she's doing.  

This whole thing has been quite a paradigm shift for me. It started with acceptance. Then, it was blind commitment and trust in professionals. In hindsight, I think my acceptance was misplaced. I had accepted that there was a "disorder," and that it might always be there. Sensory Processing Disorder means that there is disorder in the way that her brain processes her environment through her 5 senses. Although I do accept that there is a "disordered process," I have begun to see that therapy will either work, or it won't, but we will have worked. And that can't possibly hurt. Even if we saw no progress, I'd feel much better knowing that we are doing everything we know to do. I can see a lot of progress since we started, so either "Therapy Works"...or Emma is just growing into her senses. Frankly, I don't care which. Progress is good.

 Now, I've decided that I don't accept disorder. I will keep ordering. I want to be the calm in Emma's storm. When a storm comes, I don't just want to accept that there is a storm. I will not just stand in the rainy, stormy night with my daughter, waiting it out helplessly hand-in-hand.  I will lead her to shelter or die trying. And when Emma is grown and she's ever alone out in a storm, I don't want her to process the storm or accept the storm. I want her to learn to set aside the overwhelming physical senses and listen to the quiet within. I want her to learn to accept that she won't always understand a storm until it is passed. I want her to accept love. I want her to accept help. I want her to hear a voice inside her heart that tells her that she is more than enough.

One of the first simple but amazing therapy tools we learned was the "thera-brush". Rodney came home with a small, white, plastic brush with soft, white, plastic bristles. He showed me and explained exactly how it was to be used. He said we were to apply moderate pressure and make long strokes down each of her limbs for ten reps. Then, he showed me the joint compressions. We were to take her wrist in our hands and gently but firmly pull her joint, out, in, out, in, for 10 reps on all major joints (wrists, elbows shoulders; ankles, knees, hips). This combination of stimulation is supposed to strengthen the brain's communication with the body.

Fascinating, really. The body's largest organ is the skin, so it makes sense to think that it could have a significant effect on her brain. The regimen was to be fairly intense and then lessen as time went on. She was prescribed the therapy brush with joint compressions 8 times a day for 4 weeks, 4 times a day for 4 more weeks, 2 times a day for 4 more weeks after that, then one time a day for 4 final weeks. Then, it could continue as needed or requested. That first 4 weeks was a tall order, given that she had just begun school and we have to work, of course. Since her legal accommodations had not yet taken effect, there was no way to get her a school therapist to do the sessions throughout the day.

I know schools have a lot of legal policies and security measures to navigate, and I'm glad for the precaution and protection. When I informed the principal about her new therapy regimen, she politely told me that it was impossible to get a therapist in that many times even if she had the accommodations in place.

 So, I came to her school and did her therapy myself. I could only come one time a day, but I thought that was better than nothing. I'd rush over at lunch, sign in, get my visitor's pass sticker with my I.D., and go get her from her classroom. They didn't have a private therapy room, so we made due in the principal's conference room when she didn't have a meeting. I'd get Emma undressed and do all of her skin brushing and compressions, and then hurry and get her dressed again. I liked to finish off with some jump-and-jacks, crab-walks, and wheelbarrow walks (exercizes I know her occupational therapist uses). I'd pick up her feet and push her like a wheelbarrow all around the conference table. It was fun. And I thought it might help her to get some of that energy out, re-group and hope for a "green monster" day. Then, I'd walk her back to class and be on my way.

I was in a hurry to get back to work, but I always at least peeked into Ethan's classroom to see how he was doing. He always looked so happy and busy. But...one day, he got off of the bus and the first thing out of his mouth was, "Why does Emma always get a green sticker with your picture on it every day, and I don't?? I want a sticker, too," and he cried. My poor baby! I stopped right there on the street and lowered my face to his.

"Ethan...oh, my gosh, honey, I am so sorry. I didn't know you wanted a sticker. I always give my pass to Emma when we're finished with therapy because she wants it. Mommy just comes to see Emma because she has to have her therapy. How about if I start bringing a special sticker every day just for you? Would you like that?"
"Yes."
"Okay." I thought my heart was going to fall out. So, from then on, I signed in and out twice just so I could get two stickers with my picture on them. And I loved seeing Ethan's proud face when I came to give him his sticker for the rest of those 4 weeks. :)

Karli's Story: "My Night with E & E"

This post was written by Karli Ashing:

Dear Emma and Ethan, I am about to tell you about the first time I baby sat you. It was kind of a long night lol! When I first got there you guys were so excited. Emma kept saying HI KARLI! It was so cute. Ethan just said hi Karli once. When I first got there we rode scooters and bikes. But Ethan wouldn't ride his bike until I put his helmet on. He said Karli are you forgetting something? I said what do you mean? He said you forgot to buckle my helmet. But when it was Emma's turn she didn't care about her helmet. I had to put it on her or she wouldn't have worn it. While we were riding bikes Ethan and I decided we were going to race. Emma wasn't quite fast enough to race yet though. So Ethan and I raced to the end of the street and the first time he beat me. P.S. I let him win! But the second time I won. After we played outside we went inside. All Ethan wanted to do is watch Batman. He was so happy he could watch a big kid movie. He was saying I watch this movie and it is SCARY! And I don't even get scared. When we put in the movie Ethan didn't watch it at first. But after a while he started to watch it. Every time a scary part would come he would run to me and say that was a scary part Karli! Emma was asking me to do the airplane the whole time. The airplane is when I pick her up with my feet on her stomach. When she was in the air she would try to flip over. She loves doing that. As the night went on Emma decided she wanted to pee the floor. Then after she peed she thought it was funny. It was kinda funny how she did it though. She was wearing a dress. So she hiked up her dress, squatted, and peed. So let's just say her momma and daddy were not to happy about it! So this this my story of the first time I babysat.

I had a great night with you love you E&E.

                                 - Karli Nicole Ashing

[LOST FILES TWINCIDENT!] Dear "Baby,"

As Rodney was rearranging his vinyl record cabinet, he stumbled upon a small piece of paper folded in half....

Later, he handed it to me, and I read it for the first time since I wrote it...

I thought it would make a perfect "Throw-back Thursday" post for the blog...way back to when I was only a few months along and hadn't yet learned what was in store.

This, beloved Twincidents Readers, is the 1st Twincident ever. I give you..."The Lost Files Twincident," The Original Incident:

4-year-old Dempsey sayings...

"Is that our local library we just passed?" [Yes, it was.]

"Mom, someone disturbed me while I was eating." [At a birthday party]

"Mom, does Mimi wanna play with me bad, bad, bad?"

"Jesus wants us to brush our teeth. He's in our hearts and he doesn't wanna smell stinky teeth."

"No! I can't just wear my beater because it won't make me warm as toast!!" [After I tried to convince him to just wear his undershirt with pajama pants instead of a pajama shirt]

"Mom, I'm hungry. And one thing you can't do is leave a man hungry and thirsty." [After repeating that he's hungry several times while Mommy was putting away laundry]

"And even I'm kinda thirsty in here." [Frequent tag]

"Mom, Emma's got her jynis out. She needs to put on her panties, so I don't have to see her jynis. That's private."

Did you pee-pee in the bed last night?

"Yes, but I didn't poo-poo." [Okay, he never poo-poos the bed....]

Well, that's good, but you need to wake up and use the bathroom instead, don't ya?

"Yeah, but I was just sleeping and doin' my sang...I didn't know I had to pee-pee."

You are so smart, Ethan.

"Sanks."

"When I'm an adult, I'm gonna buy that."

Ugh, this mess. You kids keep making huge messes every time I turn around...

"I'm a kid. That's why...."

"Mom, the Easter Bunny wears shoes under his fur. And he has skin on his arms because his fur...is a sleeve!! And his head...is huge!"

4-year-old Lynny sayings

"Mom, guess what?"
--What?
"Poo-poo head."

"I need granola bar. Can I--granola bar, pwease? Say, 'Yes, you may, Emma.'"

"Ice cream--shut it." [When she can't have ice cream]

"Five. Five candies, pwease." [After learning how to count and how to choose only one candy instead of a huge handful, this is her new candy strategy.] 

"Hi, Chuck. 'I not Chuck'." [I have no idea why this happens.]

"This is terrible!" [Having her hair brushed] "I got tangles. I got pizza on my hair."

"Get off a my spot."

"Weave. Me. A. Wone!"

"'You needa say you sorry'--Sorry!"

"This makes me so sad."

"Mom, sing the Ariel song!" [Again.]

"I'm tellin on you. I'm tellin' Mimi on you, Mommy."

"Shhhh, let Emma rest."

"Emma's talkin'--shut it." [Oh, yes, she did.]

"You not listen-ing"

"Hi, tree! You so beautiful. That's a big ol' tree."

"Really?"

"Absolutely."

"Exactly."

"Whadiya want for breh-fixt? Eggs?" [Takes order with pencil and pad]

"Bus rid-ers--STAND UP!!" [This one cracks me up, so I say it a lot too. ;)]

Bawkin' Bunny

We were just pushing our cart up to the back of a long line at the grocery store, and Ethan had already honed in on the candy.

"Mom, you should get us some of that candy. Because you never let us have candy. You always say no. So we never, ever get candy."

"Well, that's because I don't wanna get somethin' started, so you think you're gonna get candy every time we go somewhere."

"Because of you, I'll never have candy every day."

I laughed. "You're welcome."

Emma noticed some shiny eggs. "Eggs! Mom, what's a chicken say?"

"Bawk-bawk," I said.

Then, Emma noticed the bunny on the egg box. "A bunny!! Mom, what's a bunny say?"

And she looked back at me, waiting for me to do the bunny face. I never have a sound for a bunny when she wants one, so I just pucker my lips and move them up and down like a bunny. She loves it. She does the bunny face back to me, and we both smile every time. It's like our own little inside joke.

I made the bunny face but then said, "But this bunny right here says bawk-bawk-bawk like a chicken. It lays these chocolate eggs, and there's creme inside them. I never did like them. I'm not big on creme-filling."

"That bunny says bawk-bawk-bawk? Like a chicken??"

"Yes, I promise. What a silly bunny, huh?"

Ethan laughed very hard and told the man in line behind us all about the confused bunny. "This bunny thinks it's a chicken! It says bawk-bawk-bawk like a chicken! And it lays chocolate eggs!"

"Yes," the man laughed along, "the Cadbury Bunny!"

"Me. Mom, pwease. I need 5 eggs," Emma said as she pointed to the eggs.

"When I'm an adult, I'm gonna buy one of those. And one for Emma, too," said Ethan.

"Awwww, you are a sweet brother," I said.

"We would like those, Mom. They're not gross. They're yummy!"

"Oh, yeah? Well, how about I buy you and Emma both one, so you can try it for yourselves?"

"Okay!!" said Ethan.

"Yeah!!" said Emma.

When we finally got to the car, they both concentrated and worked very busily to get that shiny, smoothly wrapped foil from their prizes.

I smiled as I drove home in the complete quiet except for the "Mmmmm's" and the satisfied smacks of those little shugs in the back seat.

Sensory Overload

Emma has been struggling with her language and communication and I noticed it fairly early on. I think I flagged it early only because she is a twin. If I didn't have another child of the same age, I don't know if I would've noticed it as a problem so soon. Then again, I feel guilty for not doing something about it sooner.

I had been noticing some strange behavior...like the repeating and reciting and the distorted or inappropriate responses to questions. She seemed to know a response was required, so she'd just repeat my question. There were also times that Emma would completely fall apart and cry when interacting with some of her loving family members like her papaws. They looked at her too long? Too soon? She wasn't ready for that head-pat? She suddenly felt social pressure or intense discomfort for whatever reason. It was sad. It was scary. I'd hold her and try to comfort her. She'd eventually come through the panicked crying and heavy breathing. I felt a need to apologize to her papaw and explain that she really does love him. Ummm...I'm so sorry that Emma seems to find you horrifying. Haha! It was a little embarrassing. But I think they understood. We all understood that something was going on inside of Emma that we didn't understand.

But I think I do kind of understand. I was a very sensitive child. I remember feeling intense waves of emotions with every vulnerable moment or awkward exchange. Anytime I was spotlighted, I felt it. Anytime I was singled out at all for any reason, I was extremely uncomfortable and could be easily brought to tears over anything. I couldn't help it. My feelings were so intense and out of my control. Maybe that's what Emma's feeling. But maybe it's a little bit more than that. She says things totally out of context. For example, her latest strange repetitive go-to is "I can't see." Yes, she can see. This is something she says when she needs an escape clause.

Emma, don't hit your brother!

                  "I can't see..."

Emma did you make this chocolate syrup mess?

                  "I can't see..."

She started saying it after school one day when apparently other kids were saying they couldn't see the tv because she was standing in their way. I imagine she was then told to sit. She must've seen this as a valid excuse that requires the other person to move. "I can't see," is the trump card...the I'm-right-and-you're-wrong card...the it's-not-my-fault card. For now. Before "I can't see," the trump card was, "I have to go home." She'd say it every time she faced resistance of any kind. Even when we were at home, she had to go home. She'd say it at everyone else's house too, and I'd worry about her rudeness. Ugh, why does she have to have these strange, rude outbursts? Sigh... she'll be okay. Before "I have to go home," the trump card was: "Melmon, now, shut up!" That's a line from a movie. She said it when she was mad. She'd yell it out in church when she couldn't go sit with Mimi in the choir loft. Ummm...she doesn't mean that, guys.... I promise she's a sweet little girl.... lol

I'd swear sometimes that she was just parroting everything and not taking in any meaning at all from language. But I knew that wasn't true. She knew when to protest. I knew when "I have to go home" was coming. But I couldn't excuse her behavior and ignore her intelligence. I was taking meaning from hers. I knew what melmon now shut up and I have to go home meant.

I know what "I can't see" means. But that won't help her. No one else knows. I can't accommodate her by ignoring it and adapting to it. "Use your words, Emma, ...the right ones."

As this problem was surfacing, I was aware of my brain shutting it out. I know denial is usually not something you are aware of...but I was a little aware. I knew something was different, something that might be bad. What if my baby has something that may make all of my dreams for her out of reach? What if there's nothing we can do to help her? I'll just not worry, I said. She'll be fine, I said. I'll just wait for...whatever this is to go away. 

What if it doesn't go away?

When the kids were starting school, I was so excited and anxious. I was well-aware of Emma's verbal weaknesses and her destructive tendencies, as I have written about in Pick-it-up-now... and Tay inna Win., so I was sure to warn her teacher at the 1st meet-and-greet. Judging by the look on her face as I tried to explain, she probably thought I was one of those mothers whose baby is always the exception, who's always in need of special treatment. But she was nice, and she listened.

Then, the folders started coming home with daily behavioral marks. It has been interesting to see how differently the kids' teachers manage their classrooms. I truly appreciate all of their differences. Ethan's teacher doesn't send home a behavioral mark or grade at all. I've yet to hear a peep about Ethan's daily conduct. Emma, however, has not escaped the radar. And that's good, right? Green monster for Emma's sweet teacher! ;) That's what I think she needs, to be on all of our radars. Ethan, on the other hand, is yelling out his coordinates at every turn, so we don't have to radar him as closely.

The behavioral scoring system in Emma's class is Green Monster, Yellow Monster, and Red Monster. Her teacher made sure to clarify that "monster" was a term of endearment, her whole class being known as "The Marvelous Monsters."

On the first week, Emma had a yellow monster and a red monster. That escalated quickly. My heart started racing. I didn't know what to do. Should I punish her? I was so worried because she couldn't/wouldn't tell me anything. She couldn't/wouldn't answer any of my questions. She'd get a far-off look in her eyes and be babbling or la-di-da-ing to herself, but somewhere in the distance, she must hear me saying: "Emma, why did you hit your friend at school today? Emma...Emma, honey, look at Momma."

We took her to her doctor and he referred us to an occupational therapist. When he first walked in the door, he spoke to Emma:

"Hi, Emma."
"Hi."
"What book are you reading?"
"Library..."

He was quick to tell us that he doesn't think she has..."The 'A' Word." Yes, he used that term: "I'm certain just from that brief encounter that she does not have...The 'A' Word."

He knows how afraid parents are of that word...of autism. I was afraid of autism...of that word and what I don't know. I had wondered if she was on that vague phenomenon known as "the spectrum" before, but I decided that it didn't matter. Whatever it was, I love her still the same.

One day after Ethan had a failed interaction with her, he asked, "Mom...why are Emma's words wrong?" He had never asked that before and I was glad because before that time, I wasn't prepared to confront that question. I was too scared and frustrated and powerless. There was nothing I could do about the red monsters and the wrong words. After all the worry and fear, I think I am winning the battle with my own red monster. I know that no amount of discouragement will help her. Only love will.

"I don't know, brother, but she is working on it, and someday her words will be right. We just have to help her and love her."

"I love Emma," he said. "And I'll help her."

We all love her more and more every day, and we know that her speech and occupational therapy are some great things we can do to help her make her own dreams come true.

Alpha and Omega

After the death of Ethan and Emma's Papaw Jack, Ethan was confused and thoughtful. Emma would state now and then that Papaw was in heaven, and we would gently confirm. They both seemed to accept this as a vague fact, but Ethan was more concerned about the concept than Emma. They do go to church on Sundays, but I really didn't think my 4-year-olds were taking away any religious concepts other than "Jesus Loves Me."

One day as we were lazily playing in the front yard, Ethan made a comment that was disturbing for me, and a very significant conversation ensued:

Ethan: God's dead.

Me: --No, He isn't. [stunned] God is alive. Ethan, why did you say that?

Ethan: Because he's in heaven like Papaw.

Me: He's alive in heaven and in your heart.

Ethan: [Looking down at his shirt] How does God fit in my chest?

Me: God is in your love. That love you feel for Mommy and Daddy and Emma, that happy in your heart, that's God.

Ethan: Is this leaf alive?

Me: Yes. [feeling somewhat relieved of the gravity]

Ethan: And when it dies, it'll go to heaven.

Me: Ummm...if it has love in its heart.

Ethan: It does have love in its heart.

Me: Ok. Then, it will go to heaven.

Ethan: ....Why did God make his son die? ...on the cross.

Me: [stunned again] He didn't make him die. He died on the cross because of mean people.

Ethan: Is my dad gonna make me die?

Me: No. Never. Ethan you are such a deep little thinker. God loves that about you, and so do I.


Amen.