Thankful Thursday: May 24, 2013 Edition

Look what I found on post. They were just giving them away with a free bus ride.

20130604-115710

I know I haven’t been the best blogger these past few months. For those still reading my posts, I say “Thank You!” If you’ll bear with me, things are in a huge state of flux in the Noba household right now. I may disappear for days, weeks and months at a time as our family faces reintegration. I would ask those of you who pray to do so for our family. In the ten days since my husband has been home some difficulties have already come to light and let’s just say:

“Not all homecomings are joyful and triumphant. Not all homecomings are easy. Not all homecomings are kisses and rainbows and unicorns and butterflies. But we are committed to getting through this stage of life as we have all others. There will be more on this in the future. Of this, I have no doubt.”

Thankful Thursday: May 2nd

I know I’m about two months behind on these. Life really has gotten in the way, and I do plan on catching them up, even if I have to write two or three a week.

Since today is our second birthday here at Notes From the Backseat, I thought I’d go back to just how this blog got started. I don’t think I’ve ever really gone over that other than to say it’s all my husband’s fault lol

Let me take you back in time about two and half years or so. I’m sitting in the passenger seat of our Honda CR-V as my husband drives along the interstate. In the backseat, Sissy sits behind daddy, Little Brother behind me and the cat, in her carrier, wedged between the car seats. Strewn about the floor board in both the back and front are duffel bags, diaper bags, crafting bags, supplies for the kids (such as snacks and DVDs). In the very back, a stadium stroller, a dog in a crate, two large suitcases and a bunch of pillows and blankets. On top of the vehicle was a large black bag, securely strapped down full of more travel supplies and all the Christmas presents, already wrapped and hiding from the kids so as not to ruin Santa just yet.

You see, this was Christmas 2010 and we were in the middle of a PCS from beautiful, sunny Southern California to bitter, cold, dreary Central Virginia. From forecasts like “78 and sunny” to “23 with a wind chill of 10”, we drove through snow, ice, rain, sunshine, warm and cold. Ten states in Five days. Not a trip I’d want to make in such a short time ever again.

During our trip, things would come up between the kids, or between us that just made us laugh. I used these to update my status on Facebook with the title “Notes from the Backseat #__” and had a great time with it. After a while, my husband decided that “Notes from the Backseat” would be a good blog title, though it would be a few more months before I actually started the blog, shortly before our last PCS to Middle Tennessee (which is actually on the Kentucky boarder, not sure how that works).

So in honor of our second birthday, and in being thankful for all this blog has done for my sanity over the past two years, I present:

THE BEGINNING

#1: “i can’t wait to tell people to look at my tooth hole”
#2: “ok mommy, go back to your seat please! Go!”
(This was while I was leaning over in my seat making sure her movie was playing in the right language lol)
#3: “can I get out of the car?”
“like now? Can’t you wait til we get to Albuquerque?”
“well, okay mommy”
#4: “mommy, you can close the wind”
(She meant the sunroof)
#5: “look mommy! Cows! Moo Moo Moo!” -then she proceeds to giggle for 3 minutes.
#6: “i see snow! The holidays are here!
#7: “no no no!”
“what?”
“you cannot drive in the snow!”
#8: “oops! It’s not working!”
#9: “look at all the snow! It’s turning white!”
#10: “a birthday! Is it my birthday? I love parties!”
#11: “op! You’re out! Op! You’re out! Op! Everyone’s out!”
(we think she’s playing tag by herself)
#12: “mommy, my tooth is growing up”
(I’m just glad its not growing upside down)
#12 (ish): “ok, kiddo, let’s look for some boots for you”
“And Dora too!”
“ok let’s look for some shoes instead.”
#14: “you rescued the marble! you’re my hero mommy!”
#15: “Did you steal my pizza?!”
“MMMmmmMMM” (courtesy of Little Brother, he ate it all)
#16: “mommy, I think I know why its upset.”
“why is it upset?”
“cuz its dark outside. Can I have a hug?”
(she misses her daddy already)
#17: “mommy, when the movie’s over, I can have poptarts”
(no she cant, but it was a nice try, wasn’t it?)
#18: “thank you so much, SuperHero Mommy!”
(after putting the post-it over the sensor on an automatic flusher)
#19: “mommy, the tv is big so now we can play ping pong!”
(daddy said when the tv got here she could play Kinect sports ping pong lol. It’s here and she wants to play)
#20: Daddy: “honey, do u want subway or should we try Bo Jangles?”
Sissy: “jingle bells jingle bells jingle all the way. Oh what fun it is to ride in adkfirnuch eeeeeeh!”
Daddy: “i said Bo Jangles not Jingles Bells”
(she’s not quite sure what the words are LOL)

So there it is. The 20 status messages that got this blog started. My kids have always been a source of joy to me. Sure there are days that are long. There are days that are difficult. But all too often, the days are just days. Reflections of who we will be tomorrow and who we were yesterday. Today, while walking home from school, Sissy remembered about a trip she and daddy took to the beach during block leave last summer. Just the two of them, for an afternoon, went to the beach and made sand castles “and I got to knock them down!”

Today, I’m thankful for this blog.
For the people my words have touched.
For the enlightenment it has brought to others.
For the piece of mind it has brought to me.

Happy Anniversary, and 30 Day Drawing Challenge: Day 6-8

HAPPY ANNIVERSARY TO ME!

Or should I say “HAPPY BIRTHDAY, NOTES FROM THE BACKSEAT!”

My blog is two years old today.

Here, have a cupcake:

Ain't she cute!?! Just the sweetest little cupcake in the whole wide world!

Ain’t she cute!?! Just the sweetest little cupcake in the whole wide world!

Now, on to the drawing challenge, and yes, I’m really behind, but I will finish this. I will!

Day 6: Favorite Drink

Honestly, I don’t have a favorite, so long as it’s cold.

Day6

Day 7: Favorite Bird

I really wish these lists included less “favorites” and more random things to draw. I don’t have a favorite _____. Most of the time, I’m lucky just to have a favorite color. I really was at a loss, so I drew the first bird that came to mind while staring mindlessly at the calendar above the kitchen table.

Day7

Day 8: Amusement Park

Well that’s vague, isn’t it? Technically any park that brings joy, amazement, and fun is an “amusement park”, but I went with the good old stand by. When in doubt, go back to where it all began…

Day8

30 Day Drawing Challenge: Day 2-5

Okay, so yea… I got hit hard this month. Now, as the month is winding down, we are preparing the house and our hearts to have my husband come home sometime within the next 6 weeks, though we don’t know exactly when yet. It’s gonna be a lot of change and my blog is no doubt suffering for the changes that have happened and for those yet to come. My “29 Things to do Before 29” list seems to be a flop, but is still salvageable and I will just have to adjust some of the times on some of the items. With a little shift here and there, and having my husband home with the kids, it should be a lot easier to fit it into my schedule… I take on too much and then come down hard on myself when I can’t get everything done. This is always an issue. But I have drawing, so for the next few days I will make a mad dash to the finish (which seems to be my M.O. anyway 😛 )

So, on with the show

Day 2: Favorite Sport
To be honest, I meant to draw swimming and forgot, so I drew a football. I don’t really like football. I like to sit beside my husband and read a book while he watches football. People who know me would be shocked to learn that I really enjoy swimming. I enjoy the feel of the water gliding across my skin and I enjoy the focus. It’s one of the few times I really relax, when I’m in the water. I’m not a strong swimmer by any means. I don’t like to be splashed and I prefer to be by myself or with a small group when I swim. It takes me a long time to get used to the water temperature. I mean, like, ridiculously long. It comes to the annoyance of everyone I swim with. I know it drives my husband crazy because he likes to splash me as I’m “acclimating” to the water step by step. I cannot just jump into the pool. It is physically painful when I do this. But swimming is my favorite sport… Enjoy the football.

Day2

Day 3: First Car

1983 Datsun Nissan Pulsar NX This was my first car. Go ahead, click the link, I can wait.

Done now? That car reminds me of an uncool Delorean from the Back to the Future movies. But really, my drawing is the most accurate depiction I could come up with. Nothing like having dad try to teach you a three-point turn in a car with no brakes… I almost hit a dresser my mom was painting in the driveway… Good times.

Day3

Day 4: A Secret About Yourself

I’ll let you sort this one out on your own.

Day4

Day 5: Favorite Movie

This one was hard because I love so many movies. I chose a movie that I felt represented a multitude of great things and storylines that have lent themselves well to other stories and other mediums. Whether it’s “Oz: the Great and Powerful”, “Wicked: the Musical”, or the Gregory Maguire novels, it all started in one place, with one pair of silver slippers (yes, in canon they were silver, not ruby. Ruby filmed better, for those who don’t believe me, open a book). I think on some level, we are all captivated by the land of Oz, the magic of the “horse of a different color”, and the characters we meet along the way. From the fearfully coward to the heartless metal man to the ignorant brilliance of a man made of straw, we understand these characters and their quest. Secretly, we all wish we could go “somewhere over the rainbow”.

Day5

30 Days with Autism, Day 13

ORIGINALLY POSTED APRIL 13, 2012

April 13th: Autism has taught me that just because emotions are harder to articulate doesn’t mean they aren’t felt.

When you can say anything, nothing you say feels important. When you can’t say anything, everything you say is important. Before K could ask for a glass of milk, she could recite Dr. Seuss’ “Green Eggs and Ham” from memory. She could turn a page, look you straight in the face and tell you, word for word, the part of the story that played out on that page. Echolalia (seriously, don’t ask how to pronounce this, everyone seems to do it differently and I’m beginning to wonder if any of us are right.), anyway, echolalia is a form of communication. According to Dictionary.com, it’s a noun meaning:

1. In Psychiatry . the uncontrollable and immediate repetition of words spoken by another person.

2. the imitation by a baby of the vocal sounds produced by others, occurring as a natural phase of childhood development.

Now, I have to tell you, in my experience echolalia is not something that has to be immediate in response. It can be immediate, such as when you ask a toddler if they want some milk, and they reply “Want some milk”. Or when you ask a child if they want “milk or juice”, they answer “juice”, but when you ask “Do you want juice or milk?” they change their answer to “milk”. That’s an immediate echolalic response based on the last option in the series. This is not always the case for children who, like K, use echolalia as a primary form of communication. It took a lot of frustration on my part to understand that she was only using what she had available to her. There were times in my most frustrated moments where I would say things like “I don’t want to talk to ‘Olivia’, I want to talk to K.” or “Do I have to talk to Kai-Lan, today? Can’t I talk to you.” I didn’t realize then that she was using the only thing she had, scripted phrases.

Is that filed under “WTF” or “LOL”?

The easiest way to describe it is this:
Picture a Rolodex.
In it, most people keep contact information for family, friends, business partners, co-workers, the dry cleaners, random people, or places they may need the phone number of. For people like K, they put phrases in their Rolodex. They may be phrases from books that have been read to them or TV shows they have watched, even lyrics from a favorite song. While we group our phone numbers by relationship to us, or alphabetically, K has put her phrases in order of social situation. These are phrases you use with family, these with friends, and these when conveying emotions. When a question is asked or some response is expected, K can flip through her Rolodex, find a phrase that best matches the context of the situation and apply it. After a while she is able to substitute certain words for others and make her meaning more clear. For example, in the Nick Jr. show, “Ni Hao, Kai-Lan”, Kai-Lan is a young Chinese girl who lives with her grandfather, whom she calls “Yeye”. When something happens in the show to make Kai-Lan excited or happy, she says “(insert item, place, or person here) makes my heart feel super happy!” K attended mid-week Bible studies. In the AWANA program, at that time, she was a “Cubbie”. After study one week, we were leaving the church and I asked if she had fun at Cubbies. She replied with a long thought and they blurted out, “Being at Cubbies makes my heart feel super happy!” That meant, “Yes mother, I had a wonderful time this evening at Cubbies with all of my friends.”

When K gets too excited for an event, she gets sick. To illustrate this concept, let me tell you a little story. Close your eyes (but not for too long or you won’t be able to keep reading), now imagine you’re sitting at a table in a restaurant, say Olive Garden. You, your spouse, your children. You’re all sitting there enjoying your meals. Your oldest child is having a birthday today and after dinner you have a special surprise. You are going to take them to Toys R Us after dinner to pick out their own birthday present and then to a Chick-Fil-A for ice cream. It’s been planned for weeks. You’ve told your child there will be a surprise after dinner. So, you’re sitting at the table finishing your meal. The server brings you the check when the birthday kid claims to not be feeling well, very suddenly, and after no previous sign of any illness. After a few minutes, your child again tells you that they are feeling “sickish inside”. At which point you clarify, “sickish in your bottom or sickish in your mouth?” (I should clarify that when K gets constipated, she often feels the same as when she feels ill. “Sickish in her bottom” means she needs to go poop. “Sickish in her mouth” means she’s going to throw up.) Your child tells you “in the mouth”, at which point you get up from the table headed for the bathroom with your child. No sooner do you get out of your chair does your child stand and promptly throw up all over the table! Did I mention they serve chocolate milk at the Olive Garden? Your server, who was nearby at the time, rushes to the table, dumps the bread basket out and holds it under your child’s face while you rush to hold hair and clothes out of the way. Walking to the bathroom, your child seems fine again. In the bathroom, your child is cracking jokes and making silly faces in the mirror as you wipe vomit from their face, sleeves, shirt and pants. To see your child now, you would never guess they had just puked up three glasses of chocolate milk all over the table in a semi-crowded restaurant. Talking to your child, you discover the reason for the whole trip to the bathroom: butterflies. (When K gets excited, we call them butterflies, so she can identify the feeling in her stomach.) There were so many butterflies in your child’s stomach; they had no choice but to get sick. Your child is disappointed and upset that they will have to go home and change and won’t be able to have their surprise tonight.

If only real emotions were as simple as emoticons.

That’s the way it is sometimes. Just because your brain won’t let your mouth articulate what your heart is feeling, doesn’t mean you’re not feeling it. It doesn’t mean you feel it any less. It doesn’t necessarily mean that you feel it differently. It means you can’t always communicate it. When you are worried, scared or frightened, you might throw fits to have your mom come closer. You might get out of bed for several trips to the bathroom, you might request the cat sleep in your room or that you have three flashlights because one might burn out. When you are sad, you might not be able to handle people being near your stuff. You might get into more fights with your siblings because they usually make you happy. Just because you can’t look at someone and tell them, “you hurt my feelings”, doesn’t mean your feelings weren’t hurt. Everybody has feelings. Sadness, happiness, joy, hate, rage, anger, contentment, disappointment, fear, love, worry. Everybody feels them, not everybody can tell you about them.

30 Days with Autism, Day 12

ORIGINALLY POSTED: APRIL 12, 2012

April 12th: Autism has taught me caution when hyping an exciting event that may not happen.

Some people aren’t dependable. We’re adults (well most us), we understand that sometimes people are gonna flake out on something important to us. People are not gonna show up, they will come up with lame excuses they see as valid or won’t call at all. Some people can’t put themselves second to someone else. When push comes to shove, they just aren’t there to back you up. We all have these types of people in our lives. People who really infuriate us. People who don’t always deserve our forgiveness for missing certain events. Knowing that people can’t be depended on is easy for us. You invite them, they never come, never have a good reason, and so you stop inviting them altogether.

For parents of kids with autism, we sometimes find ourselves in unique situations. When people aren’t dependable, it can throw our kids into A tailspin of fits, tantrums, hypersensitivity and chaos. Our poor children do not understand why you said (so and so) was coming to visit and then didn’t. Our children do not understand that sometimes things come up preventing an event from occurring. They don’t understand that people can love without showing support. It’s harder for our kids when people let them down. It’s harder on us, the picker uppers of flailing children, to comfort them when an event doesn’t take placed as planned for days, weeks or even months before. It’s hard to be vague about things, so I’ll give you an example from several years ago:

I was pregnant with my son at the time, before we knew our daughter had autism. I was months before I was due, but I was so excited to have my mom coming to visit after the baby was born. At that point, I hadn’t seen her in more than three years, though we’d tried to get her to come visit us, it never worked out. I was telling K all about her “Mima” (pronounced ME-mah), and getting her excited to see Mima for the first time in so long. For weeks, I told K that her Mima was coming. Two weeks before I was due, the doctors began to get concerned that LJ was too big (K was over nine pounds), so they wanted to run some additional testing to see if he was healthy enough for an induction. I told my mom that on Monday I would have the test and they would tell me if when the baby would be born. LJ had other plans, as babies often due. My water broke early Friday morning before we had time to set my mom’s plans to come. I delivered him later that morning. I never got a call from my mom, no text messages, nothing. All weekend I sat in the hospital crying because my mom couldn’t even bother to congratulate me on the birth of my second child. She called me late Monday night and told me she wasn’t coming to visit. She couldn’t handle seeing her grandchildren and then leaving them. (Those really were her words.) She told me that while most grandparents run up and down the street cheering to all who will listen, she laid in bed mourning. (Again, her words.) So, in the end, she didn’t come. In fact, the first time she met my son was the summer of 2011 just before his second birthday. The point is, while I was heartbroken that my mother refused to come see me after so long, couldn’t make the effort to see her grandchildren and came up with some really lame excuses, I had to deal with the birth of a new baby and the three-year old big sister who didn’t understand why any of this was happening. Thankfully, there were few issues getting used to the new baby, but it taught me a valuable lesson: Unless, she’s in the driveway, don’t tell the kids Mima is coming to see them. There have been other times when we told K that someone was coming to see her and for one reason or another it didn’t happen. We have learned that if this is the case, to simply stop talking about it. If we don’t bring it up, she doesn’t know it’s not happening. She forgets it was even an option and moves on to other things.

Please understand, I love my mother very much. She did her very best as a mother with the very least of resources. I’m grateful for the things she has done in my life. She makes me a better person and a better mother every day. Loving someone doesn’t make them dependable, however, and sometimes even the people we love can’t be counted on all the time. This was just one of the examples of people who have let us down for visits or special occasions. It’s tough, but when it comes down to it, not talking about a trip we may take or a visitor we may have is much simpler than having to let K down if plans don’t work out. The fights, the fits and the tantrums just aren’t worth it to have her heart-broken.

 

(AUTHORS NOTE: As of this post, April 13, 2013, the only time my mother has seen my son was the one time in 2011 just before his second birthday. He’ll be four this summer and she has seen him once, despite living four hours away from us.)

30 Days with Autism, Day 11

ORIGINALLY POSTED: APRIL 11, 2012

April 11th: Autism has taught me that sometimes freedom of speech is a hard fought battle.

“I would like a glass of milk, please?”
“Can I play video games on the Xbox?”
“Mommy, I need help putting my shoes on.”

These are phrases kids use every day. All over the world, would be my guess. For kids like mine, speech is a hard fought battle every day. Each new thing said, or connection made, makes me so proud. Speech, or lack of it, was the first thing we noticed as K was getting older. It was the first thing we brought up to the doctors. When she was a year old and not pointing, or gesturing, to things she wanted, we knew something wasn’t right. When she was 18 months and still not raising her arms to be picked up, we knew something wasn’t right. I vividly remember one occasion when she was 2. She was sitting in the high chair screaming as my husband and I grabbed one thing after another off the pantry shelf in an attempt to figure out what she wanted. For nearly 30 minutes, this went on before we figured out what it was. “Use your words” became a phrase of necessity at our house, a phrase we still use to this day. To try and have a conversation with her was useless. You could ask questions, but you weren’t gonna get a discernible response. She was nearly 4 when her speech finally started to pick up and become semi-normal for age.

Before then, we often heard things like “we don’t understand what she’s saying” and “why doesn’t she talk good” from the kids in her Bible study. We were naive. The doctors told us “she’s just a late talker”, “all kids are different”, “her hearing is fine”. Believe me, I was grateful to hear it wasn’t an issue with her hearing, but why couldn’t she talk? My child who could name any flash card she was shown, but couldn’t form a sentence long enough to ask for a cup of juice. My child who could recite Dr. Seuss books from memory, but couldn’t ask for help in the bathroom. My child… Why couldn’t she talk?

I say “talk” because she understood everything just fine. She was incredibly intelligent, oh she was so bright, she still is. The child is a literal sponge, always so excited to learn something new. It was as if her brain was absorbing everything it could, but couldn’t make her mouth work properly. She understood when we asked her to do things; she could follow simple one step directions. She did her best to communicate with us, but just couldn’t. Even when she had a word down, sometimes they would change. For a long time, she could say the word “cup” just fine. Several months later, “cup” became “puck” and it remained “puck” for nearly two years. For a while, we worried she had apraxia. She knew what we were saying, she just couldn’t reciprocate. It’s the most frustrating thing in the world, having to rely solely on echolalia to understand your child when they finally do start talking.

In the past two years, her ability to communicate verbally has come a long way. After a year in speech therapy, she’s finally within normal range for her age. She no longer requires an IEP at all, but her teachers are continuing to work with her to help her improve her free association. She still relies heavily on her Rolodex on social cues, but you don’t really notice unless you spend a lot of time reading or watching TV with her. Most people don’t realize how precious speech is. Many people on any given day, say the most hateful things to friends, family, and perfect strangers. It’s a shame because there is a whole culture within our society of young children, adolescents and adults who would love the chance just to say “I love you”.