In the world of autism, we parents have many a battle to fight. Sometimes you don't even know there is a battle and it creeps up on you like a stealth, quiet ninja...
"I had no idea that the color of the curtain at story time at the library would set him off!!"
"I wish I had brought Honey Nut Cheerios for him to snack on instead of plain Cheerios-may I never make THAT mistake again!"
These are the things in life that you didn't see coming. If you're anything like me, sometimes you are really on the ball as far as projecting ahead at the pitfalls and bumps in the road for that day. Other times (okay, let's be honest here, most EVERY DAY), I am just in survival mode and planning ahead feels exhausting.
All you planners out there are shaking your heads...tisk, tisk...if only she was a bit more like me. Trust me, I WISH I was more on it. And, Liam has taught me a thing or two about being on it if I want to stay anywhere for an extended amount of time.
Sometimes, though, there are just those blaring, obvious markers in your day that should indicate what your outcome will be. As I have said before, you can anticipate with some certainty what will be served on Thanksgiving day. In this instance, bring a sack lunch for your little one with autism. You can bet that the doctor's office will have a long wait time, bring the Nintendo DS or there's hell to pay! You know, things like this...easy!
Then, there are those things that you KNOW better. You know in the deepest parts of your gut that it will not turn out okay no matter how much pep talk you give yourself or your little one. The thing that will set off a typical developing child, much less one with autism. You know the one...Fireworks!
In the early stages of Liam's diagnosis, I was determined not to let this autism thing get me down! People go see fireworks on 4th of July, dedgummit!!!!! This is what you do and I will not, so help me, let my son determine whether or not I will see fireworks on the 4th.
I think I thought that he would ultimately enjoy it. Yea, maybe it was loud and maybe it looked like there was fire raining down upon us, but Hey! He'll LEARN to like it. I was stubborn and deep down, I knew it.
We always go to the beaches of the gulf of Mexico during the week of 4th of July. We have a family home right in the middle of the beaches of Rosemary Beach and Seaside in Florida. It is so beautiful down there. If you haven't been, make plans to go. Some of the most breath-taking beaches in the world are located just south of Alabama and Tennessee. Anyway...
This particular year (I'm thinking it was 2004) was not unlike most years. We were down with a big group of extended family and had planned on watching fireworks in Seaside. We set up our lawn chairs, picnic basket, and blankets and settled in for what was sure to be a beautiful night. Liam was next to me and seemed just fine running around with all the other children who were there with their families.
The first batch of fireworks began...BOOM! BOOM! CRACK!
Liam looked at me with the widest eyes and the most horrific expression on his face like, "What in the freak are you trying to pull on me??" He instinctively plugged his ears quickly and again looked at me for reassurance. I was probably smiling maniacally, trying to make the whole thing seem like a normal occasion- which set him off even further.
The screaming began, other families stared as we were frantically trying to figure out our escape route. And, with each passing second, another explosion would happen, loud cheering from the crowd, and even louder screams from Liam.
Most of the businesses had closed for the evening and we were all in one car. Liam's dad, Will, scooped him up and noticed that the small record store located on the square at Seaside still had its lights on.
The guys working in the store saw the tear-stained face and heard the screams and reluctantly let Will in to the back of the store.
"It's gonna be okay, Liam. Those are fireworks. They won't hurt you, I promise." More tears, more screaming...clearly, this was not our Kodak moment we were looking for.
Will thought that maybe some music might calm him down.
"JOHN MAYER NUMBER 8, JOHN MAYER NUMBER 8!!!!!!!!!!!!!"
"Okay, okay, uh...guys, can you put on some John Mayer for my son?"
The song Liam was referring to was a song called "3 x 5" that we had listened to on occasion. And, come to think of it, it is a really soothing song. (hit the link above to hear it-I think you'll agree). For reasons unknown to us, it was the very song that led Liam into a calm trance in the back of that store. They put it on repeat and he laid down in the corner and let John Mayer take him to another place.
Fast forward several years to this same record store. I had long since forgotten this story (because with autism, there is a 'story' about once per week, so life begins to run together). I took Liam in to the record shop to look around. He was yelling out all the band names on the placards and so excited when he recognized one of them.
"Mom, we have THIS record- I LOVE THIS RECORD!!" He was enthusiastic and LOUD! The store clerk was hanging behind the counter and I kind of smiled and said, "He has autism, sorry it's a little loud."
He was totally understanding, as most people are when I tell them about Liam's diagnosis. Then he went on to say, "Yea, that's interesting because there was this one time this kid came in here freaked from fireworks. He had autism and all he could ask for was John Mayer number 8."
I laughed. "Uh, yea, well, that's Liam! That's the same guy you're talking about right here."
"NO kidding!"
So, I said,"Liam do you remember coming here with daddy during the fireworks show when you were upset? You were so little, you probably don't remember that."
Liam very nonchalantly said, "Yes, I do. And, that guy's name is Edward."
I looked at the store clerk and he nodded surprisingly that yes, he was indeed Edward. No name tag gave it away. Liam just remembered it. Liam had never talked about that incidence, so I never assumed he remembered. We both just looked sort of dumbfounded at each other. And, Liam moved on to other band names, "Vampire Weekend, we have THAT record!!"
Huh.
I was stunned. Liam's diagnosis is Pervasive Developmental Disorder NOS which is a fancy autistic name for developmental delay. But, I realized in that moment there was a lot more going on in Liam's brain than I gave/give him credit for. He knows things. He remembers a great deal. And, he is taking in a lot more than we can even know. His words and conversation do not match this knowledge, so it is difficult for me to know exactly what he sees. But, I am fascinated.
Edward has become part of our routine down at the beach. We will go to the record store a few times a year and say hello. Edward gets a kick out of how tall Liam's gotten or the obscure bands that he knows about.
And, I'm continually fascinated at the way my guy's brain really works. I get to see pockets of this every once in a while, but rarely. We mostly talk about the same few interests he has in looping paragraphs.
But, I learned a lot that day. First, never go ANYWHERE without noise-canceling headphones and NEVER underestimate your own child. They will surprise you!!
Wednesday, January 23, 2013
Tuesday, January 15, 2013
Joseph "Joby" Abbott Walker, Sr.
*Thanks for reading today's post. Due to life getting in the way (aka 'stuff happens') I am writing another post NOT directly associated with autism. I promise to get back in the swing of things, but had to just write about what was on my heart. I hope you will stick around....thanks, R*
Today was a cold, bleak January day...
I couldn't believe the temperature change from one day to the next, and then I remembered I lived in middle Tennessee. I grew up in Alabama, and we could have extreme weather too. But, those 250 miles north give it just a little more bite. A bit more than this southern girl likes.
So, today's weather sort of matched my mood.
I wept as I drove in to class early this morning listening to a song a friend wrote about the stuff of life. I woke up in a funk- which usually happens when I have to be coherent before 6am- but today's funk was different.
I experienced a death last week that I did not realize I was not ready to accept. My grandfather, Papa, died suddenly at the age of 85 in his home in Alabama. I include his age only because, while it is an 'old' age, there was nothing old about this guy's spirit. I have perused all of my pictures I have of him, and in every one, there is such a twinkle in his eye. There is so much life in his face. So, I think I just took for granted that I could travel to Bama and see he and my grandmother whenever I wanted to. The old cliche that you just think someone will be around forever.
I realize that the past few posts I have done have not been specifically about autism. But, I hope you will indulge me and let me share a few stories about Papa. They're not fantastical, but they are funny/special to me.
It was rumored that my grandparents' house was haunted. My grandmother would often say that she would just say hello to the 'ghosteses' as she would call them. Whenever my parents would go out of town for any length of time, I would end up staying with my grandparents who lived right next door to us in this ginormous house.
Their house was huge in my mind as an 8 and 9 year old. There were 3 bedrooms upstairs, but I would always prefer to sleep in the study which was next to my grandparents' bedroom. One time, my best friend, Katy, came to spend the night. We would scare ourselves thinking about the ghost stories and get ourselves so worked up about them. But, we secretly loved it.
So, there we were getting ready for bed in the bathroom in the long, dark hallway. We were looking in the mirror brushing our hair and teeth and whispering to each other.
All of a sudden, completely out of nowhere, Papa jumped out behind us to where we could see his reflection in the mirror. His hair was wiry, crazy, and going all over the place. He had on a white v-neck and white boxers, and his eyes were bulging out of his head.
HAAAAAAAAAAAAAAAAAAA!!!!!!
We screamed like we have never screamed before! Even after we knew it was him! It felt like a good 30 second scream.
His response was always the same after he teased one of us.
"GEEETCHEEEEEEE!!!!"
I think this was supposed to be the country version of "I got you", but it worked nonetheless. He got us. And good.
He howled with laughter while I beat on his back out of frustration, but mixed with a ton of relief that the ghosts had not descended upon us.
****************************************************
Papa grew up on a farm in the middle of the depression in the 1920's. My dad would often say he was 'depression scarred' because he would do things like leave paper towels out to dry. Or, he would fix EVERYTHING with this stuff called Shoe Goo. It didn't matter what the problem was, or if the problem really just needed to be thrown out, Shoe Goo was the magic touch. Yes, you could fix your shoes OR you could fix the seal on the window, or patch up an old lamp, or frying pan whose handle had broken off...didn't matter. It also didn't matter to him that it was urine yellow in color when it dried.
My family is much more concerned with function than form.
One time on a beach trip, my grandmother, Gran, as we call her, bought me a pack of cinnamon sticky buns to eat for breakfast. As kids do, I left the package partially opened all night on the kitchen counter while I slept.
When I woke up the next day, a pack, gaggle or herd of ants (not sure of the term there) had made their way up along the bar and into the entire package of cinnamon rolls. They were crawling in ecstasy as they were over every inch of my now ruined breakfast.
As I looked to my left, I noticed that Papa had a huge jar of honey that he had gotten from his cousin's farm. The ants, not to be outwitted, had made their way under the brass Ball jar top and into the honey. It looked like someone had taken a pepper shaker and poured bits of pepper all in the honey. You could tell these ants had their dying wish to drown in this ocean of golden, yellow delight.
I felt so guilty for leaving the package opened all night and ruining Papa's favorite honey.
"I'm sorry, Papa. I've ruined it."
"WHAT?!! Nah! There's nothing wrong with this honey."
And, I watched in horror as he spooned out tablespoons of honey and spread it all over his English muffin. He closed his eyes and ate it like it was something served on a silver platter. There was no way he was gonna let that whole jar of honey go to waste-noooooo sirrrr!!!!!
****************************************************************
I could tell you stories of how he kissed everyone he met- grown men included. I could tell you about his loud, but beautiful, tenor voice that he pridefully sang all the harmony parts of the hymns in church.
I could tell you about all the times we would swim in his swimming pool in the backyard and play tag.
I could tell you about the road trips he would take me and my two boy cousins, David and Daniel, on: to the beach, Tennessee, Mississippi, ski trips, and family reunions.
I could tell you that he would always wake me up in the mornings with the same farm boy song that his daddy used to sing to him about two cows called "White Foot and Light Foot":
Wake up, White Foot.
Wake up, Light Foot.
Come and follow Jesse to the milking pinnnnn.
To this day, I still don't really get that song, but I love that it was his routine. And, it was his little thing.
I could tell you about how he always, without fail, had Wrigley's spearmint gum in his mouth because he said it helped him clear his throat. I knew where his stash was in his office, and I would help myself to a pack or two every once in a while. (sorry, Papa)
And, I love the fact that I got to spend the most time with him in years because I was the oldest grandchild.
I could also tell you about the time a few years ago he said something so hurtful to me in passing. It cut me deeply. And, a year later, as I was sitting beside him, he looked at me and said he was sorry for what he said. He knew it was wrong, and would I forgive him.
That healed me.
Sorry's were not thrown around much growing up. So, his sorry meant something profound.
I could tell you all about the godliness of this man. A man that consistently pointed me to Jesus. A man that cried a little bit every time he said the blessing (and his blessings were always a little too long!). A man that tasted and grasped the Gospel. A man that asked everyone (much to my embarrassment) if they went to church, and if they did, did they tithe. You gotta love a man with conviction and heart. And he had both!
I guess I just wanted him to know all of these things. I wanted him to know the impact he had on me as a little girl and who I am as a mother today. So....I guess this is me doing that now.
And, as I share these memories, my mood lifts. I get a smile on my face. It gives me encouragement to be a legend in my own sphere of life. To touch those around me in ways that are meaningful and life-giving. To bring joy to seemingly ordinary days. To always laugh. And always be grateful because there is so much abundance around us every day.
This was my Papa. And, I love him.
Today was a cold, bleak January day...
I couldn't believe the temperature change from one day to the next, and then I remembered I lived in middle Tennessee. I grew up in Alabama, and we could have extreme weather too. But, those 250 miles north give it just a little more bite. A bit more than this southern girl likes.
So, today's weather sort of matched my mood.
I wept as I drove in to class early this morning listening to a song a friend wrote about the stuff of life. I woke up in a funk- which usually happens when I have to be coherent before 6am- but today's funk was different.
I experienced a death last week that I did not realize I was not ready to accept. My grandfather, Papa, died suddenly at the age of 85 in his home in Alabama. I include his age only because, while it is an 'old' age, there was nothing old about this guy's spirit. I have perused all of my pictures I have of him, and in every one, there is such a twinkle in his eye. There is so much life in his face. So, I think I just took for granted that I could travel to Bama and see he and my grandmother whenever I wanted to. The old cliche that you just think someone will be around forever.
 |
| The stud that he was! |
I realize that the past few posts I have done have not been specifically about autism. But, I hope you will indulge me and let me share a few stories about Papa. They're not fantastical, but they are funny/special to me.
It was rumored that my grandparents' house was haunted. My grandmother would often say that she would just say hello to the 'ghosteses' as she would call them. Whenever my parents would go out of town for any length of time, I would end up staying with my grandparents who lived right next door to us in this ginormous house.
Their house was huge in my mind as an 8 and 9 year old. There were 3 bedrooms upstairs, but I would always prefer to sleep in the study which was next to my grandparents' bedroom. One time, my best friend, Katy, came to spend the night. We would scare ourselves thinking about the ghost stories and get ourselves so worked up about them. But, we secretly loved it.
So, there we were getting ready for bed in the bathroom in the long, dark hallway. We were looking in the mirror brushing our hair and teeth and whispering to each other.
All of a sudden, completely out of nowhere, Papa jumped out behind us to where we could see his reflection in the mirror. His hair was wiry, crazy, and going all over the place. He had on a white v-neck and white boxers, and his eyes were bulging out of his head.
HAAAAAAAAAAAAAAAAAAA!!!!!!
We screamed like we have never screamed before! Even after we knew it was him! It felt like a good 30 second scream.
His response was always the same after he teased one of us.
"GEEETCHEEEEEEE!!!!"
I think this was supposed to be the country version of "I got you", but it worked nonetheless. He got us. And good.
He howled with laughter while I beat on his back out of frustration, but mixed with a ton of relief that the ghosts had not descended upon us.
****************************************************
Papa grew up on a farm in the middle of the depression in the 1920's. My dad would often say he was 'depression scarred' because he would do things like leave paper towels out to dry. Or, he would fix EVERYTHING with this stuff called Shoe Goo. It didn't matter what the problem was, or if the problem really just needed to be thrown out, Shoe Goo was the magic touch. Yes, you could fix your shoes OR you could fix the seal on the window, or patch up an old lamp, or frying pan whose handle had broken off...didn't matter. It also didn't matter to him that it was urine yellow in color when it dried.
My family is much more concerned with function than form.
One time on a beach trip, my grandmother, Gran, as we call her, bought me a pack of cinnamon sticky buns to eat for breakfast. As kids do, I left the package partially opened all night on the kitchen counter while I slept.
When I woke up the next day, a pack, gaggle or herd of ants (not sure of the term there) had made their way up along the bar and into the entire package of cinnamon rolls. They were crawling in ecstasy as they were over every inch of my now ruined breakfast.
As I looked to my left, I noticed that Papa had a huge jar of honey that he had gotten from his cousin's farm. The ants, not to be outwitted, had made their way under the brass Ball jar top and into the honey. It looked like someone had taken a pepper shaker and poured bits of pepper all in the honey. You could tell these ants had their dying wish to drown in this ocean of golden, yellow delight.
I felt so guilty for leaving the package opened all night and ruining Papa's favorite honey.
"I'm sorry, Papa. I've ruined it."
"WHAT?!! Nah! There's nothing wrong with this honey."
And, I watched in horror as he spooned out tablespoons of honey and spread it all over his English muffin. He closed his eyes and ate it like it was something served on a silver platter. There was no way he was gonna let that whole jar of honey go to waste-noooooo sirrrr!!!!!
****************************************************************
I could tell you stories of how he kissed everyone he met- grown men included. I could tell you about his loud, but beautiful, tenor voice that he pridefully sang all the harmony parts of the hymns in church.
I could tell you about all the times we would swim in his swimming pool in the backyard and play tag.
I could tell you about the road trips he would take me and my two boy cousins, David and Daniel, on: to the beach, Tennessee, Mississippi, ski trips, and family reunions.
I could tell you that he would always wake me up in the mornings with the same farm boy song that his daddy used to sing to him about two cows called "White Foot and Light Foot":
Wake up, White Foot.
Wake up, Light Foot.
Come and follow Jesse to the milking pinnnnn.
To this day, I still don't really get that song, but I love that it was his routine. And, it was his little thing.
I could tell you about how he always, without fail, had Wrigley's spearmint gum in his mouth because he said it helped him clear his throat. I knew where his stash was in his office, and I would help myself to a pack or two every once in a while. (sorry, Papa)
And, I love the fact that I got to spend the most time with him in years because I was the oldest grandchild.
I could also tell you about the time a few years ago he said something so hurtful to me in passing. It cut me deeply. And, a year later, as I was sitting beside him, he looked at me and said he was sorry for what he said. He knew it was wrong, and would I forgive him.
That healed me.
Sorry's were not thrown around much growing up. So, his sorry meant something profound.
I could tell you all about the godliness of this man. A man that consistently pointed me to Jesus. A man that cried a little bit every time he said the blessing (and his blessings were always a little too long!). A man that tasted and grasped the Gospel. A man that asked everyone (much to my embarrassment) if they went to church, and if they did, did they tithe. You gotta love a man with conviction and heart. And he had both!
 |
| Papa and his cute little Christmas vest! |
And, as I share these memories, my mood lifts. I get a smile on my face. It gives me encouragement to be a legend in my own sphere of life. To touch those around me in ways that are meaningful and life-giving. To bring joy to seemingly ordinary days. To always laugh. And always be grateful because there is so much abundance around us every day.
This was my Papa. And, I love him.
Friday, January 4, 2013
Amish Paradise
So...it's been a while since I last posted. As soon as I would remember that I had not posted something, I would get busy with something else. This is where my ADD shows up. The amount of half-done projects around my house is astounding...
As I type this, I am multi-tasking by being on hold with my son's mobile carrier. I have them on speaker phone, and they keep playing these pre-recorded messages of different pop artists and bands announcing who they are, followed by a snippet of a song of theirs. I wonder if these artists know how completely terrible their songs sound on the phone speakers. It's pretty bad. It definitely doesn't make me want to run out and purchase their record.
So, instead of focusing on autism this blog, I decided I would venture outside the circle of trust into a broader spectrum of parenting and parenting those pesky teenagers. Ha! As I sat down to write this, I went through my list of things that i could talk about relating to autism, but this is the thing that is most vulnerable to my heart right now- the internet.
As I have said before, I am raising two boys. Two future men. And, let me tell you, this is no small task. I feel the pressure. I do. Without putting down half the population, I will just say that I know a lot more altruistic women than I know men.
#Ouch! *Biff! %SLAM! #Pow!
Sorry, guys. But, from my vantage point, that is what I see.
By nature, it's kind of not their fault. Ever since that little wench, Eve, tasted that stupid apple, and Adam followed suit, the curse on men has been pretty much playing itself out over and over again generation after generation. Men are obsessed with careers, toiling and slaving away in an endless journey of achieving fulfillment and success. This inevitably leads to an unfulfilling life because we were (in my humble opinion) meant to be in communion with God instead of running around aimlessly plugging in our umbilical cords to work, sex, food, fill-in-the-blank obsession, etc.
And, we've got our problems too. As women, we are forever chasing our relationships and trying to get the man to be for us what only God can be.
I realize this is grossly overstated and cliche. I know every single man is not this stereotypical and every woman is not either.
But, I gotta say...this darned internet could be the life and death of us!!! Just like anything, it is both good and evil. But, today, I can only see a glimmer of the good.
I realize that I am setting myself up by typing anything about the internet and putting it up on the...[wait for it]... internet.
But, I will only be on my soapbox for a brief moment...
I consider myself somewhat 'with it' when it comes to knowing what's happening in today's world. I love pop culture, indie music, great TV, comedy, all of it. I am a consumer, without question. And, I will say, if you are not "in the know" as it relates to what your kids are in to, then you are already behind the 8 ball.
If you do not have a Facebook account, don't know what a 'tweet' or 'tumblr note' is, then start researching now.
If you don't know who T-Swift, Psy, or Macklemore is, clear your calendar and spend a night on Youtube.
If you don't know what Halo, Skyrim, or Call of Duty are, we got a little work to do.
I'm not suggesting you need to like these things, but you gotta know what your kids are in to. You've got to stay a few steps ahead. Otherwise, you've missed the opportunity to speak truth and light into kids who so desperately need it.
I have since learned over this holiday season that all phones are moving towards being "smart" phones a.k.a.- they get on the internet. Before too long, you will not be able to get just a simple phone that texts and makes calls- it's all going digital, 4G, etc.
Personally, after I got my iPhone, I do not even know what I did with my life before I got it. It has revolutionized and helped my ADD-ness (think iCalendar with alert features) and has kept me connected in ways that have helped (and probably aided in my distractibility, truth be told) so much.
But, I am a grown woman. I know somewhat of how to filter what I need to see and what I don't need to see. Kids do not. I also know what to place on the internet and what not to place on the internet. Kids do not.
So, we have equipped and outfitted this whole new generation with these portals of infinite knowledge, with one click of a button. If my 14 year old wants to know how to do something, he will not ask me how to do it, he will ask Google or Bing or Yahoo.
And, as one male friend told me, these smart phones are little porn portals. Sorry, folks, but that's what they are. And, moms, you need to get your head out of your @$* if you don't think that YOUR boy is doing that. It's basically like placing a big box with a shiny bow on top of their laps and saying, "Sorry, don't look at what's inside!" It's too much to handle. It is asking WAY too much of them.
Then, if you think, well, I'm out of the clear, I have girls!!
NOPE. Think again.
The popular thing for girls to do now is post nude photos of themselves with the cameras that are on these little phones.
NOT MY LITTLE PRINCESS!!!! Uh, yea. It's happening.
And, why wouldn't they? If they are not getting the appropriate attention they want at home, they look to their peers, and then, if not there, let's take it up a notch. This'll get 'em talking!! *click*
So, I can protect my guys from my end, but I cannot protect them from other people. And, the way that men are wired and the way that women are wired...it's the perfect storm.
Some of you may be wanting to move to Pennsylvania on an Amish farm about right now. Believe me, it sounds tempting. You might think, "okay, I could pump my own water!" "I can rock a skirt and bonnet!"
But, it's probably not going to work. And, I went on that field trip with my kid, and it ain't all that. There were women with beards...
So, what do we do with Pandora's box infinitely open?
My only answer is logic and communication. It is not fool proof, but it is a good enough start.
The bottom line for now is that my boys can't have internet on their phones. Hence, the hours of phone time for me with customer service. These companies do have a way to disable internet access. It takes a little finagling, but it can be done.
Even iPods. My son has a classic iPod and not an iPod touch. Sorry! Lame-o mom, at it again!
Also, computers are in all the main parts of the house. No computers in the bedrooms and hiding in closets. Anyone can walk in at any point in time, so no funny bizz-ness. I also have software that sends me emails to my account that lets me know what's being looked at. It is not fun to peruse through the stupid stuff that is googled, but it beats the alternative.
I know what you are thinking...uh, duh! Your son will not always be in your house. What will happen when he leaves for college. Guys, I've got this! I will simply put a police type "house arrest" ankle bracelet and shock collar for any websites that are PG-13 and above. Done and done.
I kid, I kid.
The answer is. I don't know.
This is where trust, grace, faith, prayers, and all of that combined come in to play. I will not always have the filters on and around my children.
But, my hope is that maybe they learned a little something along the way. Maybe they listened to me at some point. Maybe when I am on the edge of their beds with quiet tears letting them know the dangers of the world, they get it.
Maybe I won't try to lecture them in the morning since all I get is glassy-eyed stares. Maybe night time is better.
I do not know.
But, my hope is that the "lame" rules that are in place now will be seen as protective shields later on.
Plus, I am definitely too lazy to live in an Amish community.
P.S. Hopefully no men were 'harmed' in the writing of this blog. :)
As I type this, I am multi-tasking by being on hold with my son's mobile carrier. I have them on speaker phone, and they keep playing these pre-recorded messages of different pop artists and bands announcing who they are, followed by a snippet of a song of theirs. I wonder if these artists know how completely terrible their songs sound on the phone speakers. It's pretty bad. It definitely doesn't make me want to run out and purchase their record.
So, instead of focusing on autism this blog, I decided I would venture outside the circle of trust into a broader spectrum of parenting and parenting those pesky teenagers. Ha! As I sat down to write this, I went through my list of things that i could talk about relating to autism, but this is the thing that is most vulnerable to my heart right now- the internet.
 |
| *sigh* Simpler times. When he would just show up with the boom box and not the phone. |
As I have said before, I am raising two boys. Two future men. And, let me tell you, this is no small task. I feel the pressure. I do. Without putting down half the population, I will just say that I know a lot more altruistic women than I know men.
#Ouch! *Biff! %SLAM! #Pow!
Sorry, guys. But, from my vantage point, that is what I see.
By nature, it's kind of not their fault. Ever since that little wench, Eve, tasted that stupid apple, and Adam followed suit, the curse on men has been pretty much playing itself out over and over again generation after generation. Men are obsessed with careers, toiling and slaving away in an endless journey of achieving fulfillment and success. This inevitably leads to an unfulfilling life because we were (in my humble opinion) meant to be in communion with God instead of running around aimlessly plugging in our umbilical cords to work, sex, food, fill-in-the-blank obsession, etc.
And, we've got our problems too. As women, we are forever chasing our relationships and trying to get the man to be for us what only God can be.
I realize this is grossly overstated and cliche. I know every single man is not this stereotypical and every woman is not either.
But, I gotta say...this darned internet could be the life and death of us!!! Just like anything, it is both good and evil. But, today, I can only see a glimmer of the good.
I realize that I am setting myself up by typing anything about the internet and putting it up on the...[wait for it]... internet.
 |
| Love it, hate it. It's here to stay. |
I consider myself somewhat 'with it' when it comes to knowing what's happening in today's world. I love pop culture, indie music, great TV, comedy, all of it. I am a consumer, without question. And, I will say, if you are not "in the know" as it relates to what your kids are in to, then you are already behind the 8 ball.
If you do not have a Facebook account, don't know what a 'tweet' or 'tumblr note' is, then start researching now.
If you don't know who T-Swift, Psy, or Macklemore is, clear your calendar and spend a night on Youtube.
If you don't know what Halo, Skyrim, or Call of Duty are, we got a little work to do.
I'm not suggesting you need to like these things, but you gotta know what your kids are in to. You've got to stay a few steps ahead. Otherwise, you've missed the opportunity to speak truth and light into kids who so desperately need it.
I have since learned over this holiday season that all phones are moving towards being "smart" phones a.k.a.- they get on the internet. Before too long, you will not be able to get just a simple phone that texts and makes calls- it's all going digital, 4G, etc.
Personally, after I got my iPhone, I do not even know what I did with my life before I got it. It has revolutionized and helped my ADD-ness (think iCalendar with alert features) and has kept me connected in ways that have helped (and probably aided in my distractibility, truth be told) so much.
But, I am a grown woman. I know somewhat of how to filter what I need to see and what I don't need to see. Kids do not. I also know what to place on the internet and what not to place on the internet. Kids do not.
So, we have equipped and outfitted this whole new generation with these portals of infinite knowledge, with one click of a button. If my 14 year old wants to know how to do something, he will not ask me how to do it, he will ask Google or Bing or Yahoo.
And, as one male friend told me, these smart phones are little porn portals. Sorry, folks, but that's what they are. And, moms, you need to get your head out of your @$* if you don't think that YOUR boy is doing that. It's basically like placing a big box with a shiny bow on top of their laps and saying, "Sorry, don't look at what's inside!" It's too much to handle. It is asking WAY too much of them.
Then, if you think, well, I'm out of the clear, I have girls!!
NOPE. Think again.
The popular thing for girls to do now is post nude photos of themselves with the cameras that are on these little phones.
NOT MY LITTLE PRINCESS!!!! Uh, yea. It's happening.
And, why wouldn't they? If they are not getting the appropriate attention they want at home, they look to their peers, and then, if not there, let's take it up a notch. This'll get 'em talking!! *click*
So, I can protect my guys from my end, but I cannot protect them from other people. And, the way that men are wired and the way that women are wired...it's the perfect storm.
Some of you may be wanting to move to Pennsylvania on an Amish farm about right now. Believe me, it sounds tempting. You might think, "okay, I could pump my own water!" "I can rock a skirt and bonnet!"
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| Exhausting! |
But, it's probably not going to work. And, I went on that field trip with my kid, and it ain't all that. There were women with beards...
So, what do we do with Pandora's box infinitely open?
My only answer is logic and communication. It is not fool proof, but it is a good enough start.
The bottom line for now is that my boys can't have internet on their phones. Hence, the hours of phone time for me with customer service. These companies do have a way to disable internet access. It takes a little finagling, but it can be done.
Even iPods. My son has a classic iPod and not an iPod touch. Sorry! Lame-o mom, at it again!
Also, computers are in all the main parts of the house. No computers in the bedrooms and hiding in closets. Anyone can walk in at any point in time, so no funny bizz-ness. I also have software that sends me emails to my account that lets me know what's being looked at. It is not fun to peruse through the stupid stuff that is googled, but it beats the alternative.
I know what you are thinking...uh, duh! Your son will not always be in your house. What will happen when he leaves for college. Guys, I've got this! I will simply put a police type "house arrest" ankle bracelet and shock collar for any websites that are PG-13 and above. Done and done.
I kid, I kid.
The answer is. I don't know.
This is where trust, grace, faith, prayers, and all of that combined come in to play. I will not always have the filters on and around my children.
But, my hope is that maybe they learned a little something along the way. Maybe they listened to me at some point. Maybe when I am on the edge of their beds with quiet tears letting them know the dangers of the world, they get it.
Maybe I won't try to lecture them in the morning since all I get is glassy-eyed stares. Maybe night time is better.
I do not know.
But, my hope is that the "lame" rules that are in place now will be seen as protective shields later on.
Plus, I am definitely too lazy to live in an Amish community.
P.S. Hopefully no men were 'harmed' in the writing of this blog. :)
Sunday, December 16, 2012
To Know Is To Love
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| Candles light up the memorials of the victims of the CT shooting. |
I, like you, have been staring at the television the past few days trying to organize, file, and store the tragedy that occurred on Friday morning.
There are no words...I wonder how many times that has been written on the internet the past few days. Or, "our hearts go out", or "condolences"... We try to form sentences to say, but we cannot.
Just this morning, I read a post from a mother who struggles with a son with violent tendencies. Her blog post can be found here.
It is a poignant, open, and honest column about the real life struggles of what some of us live with as we deal with children who run against the grain of life. I was so glad to see this woman (who seems to have a big following) have the courage to show her 'underbelly'.
I do not want to speculate on unknown facts surrounding the motive of this shooter. I do not want to try to piece together what may or may not have happened in the life of this guy or the life of his mother. From all accounts, it sounds like his mom was just like me- just living life, having friends, decorating for Christmas, making dinner, checking off her list of stuff she needed to get done.
I bet she did not have this ending written down. She would have never known the evil capabilities of her son. A son that, in her mind, was someone she loved- maybe to her he was just her quirky, little guy. We may never know.
With all the talk on the tv from 'experts' and pundits about blame and what is happening to our society, I began thinking about what my responsibility is in this life. What am I held accountable for? I am responsible for myself and the actions I take. And, I am responsible for my two boys. The government is not responsible for us, we are. The organizations I am a part of are not responsible for us, we are.
I, too, have a son that is different from most of his peers. He has difficulty making friends, social interactions are forced and hard, and his capacity for empathy is severely lacking. It took me a few years to accept this realization, but I had to. Because, he is my son. He belongs to no one else on this earth but me.
And part of that responsibility piece is for me to know my son to the best of my ability. Some days it is difficult to know what in the world is going on in that little head of his. He is fascinating and curious. He is difficult and lovable- many times all at once. He is quirky, funny, but sometimes he is downright mean and abusive.
Some days I feel like the worst parent in the world, and other days I shrug my shoulders and say, 'only by the grace of God go I'. But, my guess is that most of us feel that way. Sometimes we are high-fiving ourselves internally (or externally, which looks really weird), and other days we are bludgeoning ourselves with shame and doubt.
But, it is most imperative that I know my children. There are sometimes two different rule books in my house- one for Walker and one for Liam. This may seem unfair to the outside world, but I have learned that I must parent these two very differently. My son Walker is allowed to play video games with warcraft in it, and Liam is not. Liam is 'allowed' to be a picky eater at dinner time, and Walker is not. At one time, Walker was allowed to have a smart phone/iPod, but now neither can have one until they are on their own.
These are a few of the working rules in our household. For now, they work. But, I may have to be willing to change directions at any given point in time.
One of the hardest things to do as a parent is being willing to admit that our children are capable of great evil. Who wants to dwell on that???!! NO ONE!
We all have these skewed views of our precious, little ones.
"Not my little guy, nope, he is the most generous, tender-hearted one of the bunch."
"REALLY? Because I just saw your generous one give a generous shove to my son on the playground."
Yep. This is a tough one. I don't want to admit that my kids are capable of evil because I believe they are an extension of me. And then, I would have to be willing to look at the evil in my own heart. All the little murderous things I do in my own heart when someone pulls in MY parking place. Or, when someone (as happened yesterday) cuts me in line at Target. Or, when a friend calls to share about her ex-husband's mind games, I am thinking of people that could break his kneecaps.
I won't go on and on. You're a smart bunch. But, as the woman said in the aforementioned blog post:
God help me. God help [her son]. God help us all.
Wednesday, December 12, 2012
'Tis the Season to Share the Diagnosis
It seems that one sweet little girl got her name called during the announcements for winning a character award that Liam did not win. This was, apparently, unacceptable in his mind, so she deserved to have a few school supplies missing from her cubby when she got back from snack time.
Poor guy. In Liam's eyes, life is just not very fair. He doesn't understand why sometimes his name is called to win a character award (Perseverance three years in a row-can't say he doesn't deserve THAT one!), and why sometimes other people's names are called.
I've tried to explain sometimes you win, sometimes you lose. I think I've even sung Kenny Rogers "The Gambler", but nothing seems to make sense to him. And, if I stop to think about it, to explain this concept is pretty difficult. It is very abstract- something that Liam cannot categorize in his mind full of folders and filing systems.
What he understands are things that are never-changing and constant. Like concepts of math and grammar, and the news anchor, Holly Thompson, at 7:27am on Channel 4 news. And, like whenever he says, "But, mom, I don't want to do that," I always reply with, "Too bad." (Sometimes when I don't say, 'too bad', he asks me to say it just so all is right with his universe--- I wish I was kidding.)
This poor little girl probably got really upset by the fact that Liam stole her goods. But, I know she understands the big picture.
I know this because every year I go into Liam's classroom and give a little presentation about autism. I tell the class a bit about how the brain works and how Liam's brain works differently than theirs. Many times they will ask questions about Liam and his behaviors. We usually do it when Liam is pulled out of the classroom for reading, so his classmates feel the freedom to ask the sometimes tough questions.
Some of you may question my reasons for doing this. Don't you want him just to blend in with his peers? Don't you want him to feel as 'normal' as possible?
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| Cerebral scan of autistic brain. |
I have found that the more information people have, the more equipped they are to have empathy and understanding for the situation. I can see the lightbulbs go off in these children's minds when they start to understand what Liam is going through.
The fact is that Liam is not 'normal'. He doesn't behave in appropriate ways a lot of the time. He's getting better, but it's not missed on the other children that he is sometimes talking to himself or laughing out loud when he shouldn't be. But, the other tricky part is that Liam also doesn't 'look' the part of an autistic or special needs child. He does blend in at first with his peers, and if you are not looking for symptoms, you might not notice.
But, that can become problematic when he does break a school rule and gets a consequence that may look different than what the other kids get. If he throws a book across the room, he might be asked to simply take a break. If these kids did not know his condition, they might begin to hold him in contempt. "Why does he get special treatment?" "If I did that, I would lose all of my recess.""Hey! That was a perfectly good book!"
I did this when we played baseball (or attempted to play). I sent an email out at the beginning of the season explaining Liam's condition and that I would appreciate their patience. I was amazed at the compassion that the parent's had on Liam, and even that they would explain things to their own children about learning to cooperate and being patient with others that are different.
Being open and honest has worked for us. I know there are some families who choose not to be open about their child's diagnosis, and that is okay too. But, it seems that when I am comfortable with my son and autism, everyone else seems to relax too.
And, hopefully, these trips to the principal's office will be fewer and farther between. Mr. Parman, our school's principal, is a kind and patient man and has watched our little Liam grow up leaps and bounds over the years. He admitted the other day that he will be really sad when Liam and his ever-present light leaves his elementary school next year.
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| Liam with two of his buddies. So sweet!! |
If the latter happens, that's one opportunity that being uncool will be just fine with me.
Monday, November 26, 2012
Road Trips and Tryptophan
Whew! So, you made it through! Round one of family gatherings, tryptophan, over-eating, and endless road trips. Pat yourself on the back for that one. No, seriously!
Family gatherings and autism do not necessarily go hand in hand. For one, we are completely off any sort of routine. And, we are scrambling on Turkey Day to find something for little junior to eat since we all know he won't even begin to touch anything on the buffet line. I think one year I ended up feeding Liam peanut butter crackers. Just hand over the "Mom of the Year" plaque for that one. Oh, and he probably ate all of the Sister Schubert rolls too! Guys, there's totally like 5 grams of protein in one of those six pack of crackers, right?
Honestly, I am grateful I have a family of which I can let my hair down. My precious Grandmother let go of the fact that Liam wasn't going to eat any veggies a long time ago, and things have been pretty smooth ever since. My family also gets quite the kick out of him like I do. They love quizzing him on everyone's birthdays and birth years. And, this year, they set up a basketball goal that allowed him to 'dunk' away any anxiety that may have crept up with all the people that were there.
I come from a huge family. Every second Thanksgiving the big Walker family gets together for our dinner where we celebrate Christmas and Thanksgiving together. We had to do this out of necessity since there were so many of us (I think there are almost 50 in just the immediate family). Sure we put the 'fun' in dysfunction like every other family, but for the most part, it is pretty enjoyable.
And, having understanding family members is key!
If you are one of the millions of immediate families that have autism in your clan, being a sympathetic person can be a lifesaver during the holidays. These parents do not need lectures or suggestions. They just need a safe place that they can take their child and let him/her be whomever they need to be.
Sometimes this is the hardest part! We all have expectations for our children and family members. We want our kids to act a certain way when they open a gift, or to be nice to someone they hardly know. ("ooohhhh, say thank you for such a nice gift" or "give aunt so-and-so a hug") But many times our kids don't want to be touched. Or, they may announce "Mom, she got me the same gift that you got me last year!!"
****head in hands****sigh!****
The best moments are when everyone just kind of happily ignores the rude comments or the freak outs. Or, even better, looks at you and says, "hey, I got this!", and takes your little one out to shoot hoops.
And, as parents, we need to be better about asking for what we need. Our family members cannot read our minds. And, if leaving a few minutes after dinner to go home is what is better for you, then do it. Or, if stopping by KFC on the way in to bring a bucket of chicken because turkey and dressing is NOT on the short list of foods they eat, then let the Colonel in.
Communication is everything, and once people understand what you are going through and what is most helpful for the family unit-- folks begin to get on board to help!!
This year, I had to drive from Tennessee to Florida and back up to two different cities in Alabama somewhere in between. As Liam was kicking my seat and backseat driving--("Mom, why are you going slow???" "I will freak out if you let Grandmama beat us!!") I actually thought to myself, "you know, if Liam were not in my life, it would be so boring!"
Yes, I would have more peaceful road trips and less gnashing of teeth, but I wouldn't have his light.
"Liam, you light up my life, do you know that?"
"Yeah, I know."
Of course, he does.
Family gatherings and autism do not necessarily go hand in hand. For one, we are completely off any sort of routine. And, we are scrambling on Turkey Day to find something for little junior to eat since we all know he won't even begin to touch anything on the buffet line. I think one year I ended up feeding Liam peanut butter crackers. Just hand over the "Mom of the Year" plaque for that one. Oh, and he probably ate all of the Sister Schubert rolls too! Guys, there's totally like 5 grams of protein in one of those six pack of crackers, right?
Honestly, I am grateful I have a family of which I can let my hair down. My precious Grandmother let go of the fact that Liam wasn't going to eat any veggies a long time ago, and things have been pretty smooth ever since. My family also gets quite the kick out of him like I do. They love quizzing him on everyone's birthdays and birth years. And, this year, they set up a basketball goal that allowed him to 'dunk' away any anxiety that may have crept up with all the people that were there.
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| Papa Walker- Warning: He is always looking for free hugs! |
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| 'Gran' Walker- isn't she cute? |
And, having understanding family members is key!
If you are one of the millions of immediate families that have autism in your clan, being a sympathetic person can be a lifesaver during the holidays. These parents do not need lectures or suggestions. They just need a safe place that they can take their child and let him/her be whomever they need to be.
Sometimes this is the hardest part! We all have expectations for our children and family members. We want our kids to act a certain way when they open a gift, or to be nice to someone they hardly know. ("ooohhhh, say thank you for such a nice gift" or "give aunt so-and-so a hug") But many times our kids don't want to be touched. Or, they may announce "Mom, she got me the same gift that you got me last year!!"
****head in hands****sigh!****
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| This is a portion of my crazy family from 2009. Again, 'fun' in dysfunction. |
The best moments are when everyone just kind of happily ignores the rude comments or the freak outs. Or, even better, looks at you and says, "hey, I got this!", and takes your little one out to shoot hoops.
And, as parents, we need to be better about asking for what we need. Our family members cannot read our minds. And, if leaving a few minutes after dinner to go home is what is better for you, then do it. Or, if stopping by KFC on the way in to bring a bucket of chicken because turkey and dressing is NOT on the short list of foods they eat, then let the Colonel in.
Communication is everything, and once people understand what you are going through and what is most helpful for the family unit-- folks begin to get on board to help!!
This year, I had to drive from Tennessee to Florida and back up to two different cities in Alabama somewhere in between. As Liam was kicking my seat and backseat driving--("Mom, why are you going slow???" "I will freak out if you let Grandmama beat us!!") I actually thought to myself, "you know, if Liam were not in my life, it would be so boring!"
Yes, I would have more peaceful road trips and less gnashing of teeth, but I wouldn't have his light.
"Liam, you light up my life, do you know that?"
"Yeah, I know."
Of course, he does.
Friday, November 16, 2012
Siblings Matter Too
Good morning, readers! I only put one exclamation point because I am NOT a morning person. There is only so much enthusiasm I can take in the mornings. You can bet that Liam's feet hit the ground running when the day begins. For years, he would barge into my room-quite literally-announcing his presence with, not a "good morning, mama", but a "(annoying whine sounding like a shortened ambulance siren)...MOM, GET UP!!!! GET ME SOME BREAKFAST!!!"
And, I am sure that you can imagine my less than enthused response to this assault on my sleep and my morning with a sigh and a disgruntled look on my face. Eyes half-closed, breathing heavy, limbs not fully functioning yet- "MOM, Why don't you look happy??!! LOOK HAPPY!!!!!"
This is where I perfected the fake perma-grin- no teeth, just a plastered smile, with my eyes still closed. From this point, I go through the motions of shuffling feet into the kitchen to pour a bowl of cereal, put it on the table, crawl back into bed, and pray that he would eat his cereal slowly enough to give me ten extra minutes of sleep.
Sometimes I wish I was a morning person, but,... alas, I am not. I long to be one of those people who slaps their knees when they get up and can't wait to tackle the day and whatever problems arise. I wish that the world and work day didn't really start until 10am. This seems reasonable to me. Leisurely starting the day at 8am, slow drink of coffee (I am picturing the Folgers commercial with the woman staring out at the sun coming through the window), the kids come in around 8:30-8:45-very slowly- giving me a big hug and kiss, "mom, how was your sleep?" Because I have had this quiet time to myself AND a full 10 hours of sleep, I am sweetly humming to myself and whipping up blueberry scones and fresh squeezed orange juice. "I'm such a good mother," I think to myself.
Nope. This is not our life.
And whoever the genius on the school board that makes the older kids get on the bus at 6:50am is clearly one of you morning people. (said with disdain and judgment)
I know, I know. My utopian dream of late start mornings is just that--a dream. But, this is why we all need each other. Our differences are what makes the world go 'round. I just happen to think that night owls like me are better people, in general. ;)
I wish that I could operate a giant fader, like on a music console, that slowly fades the day in.
Speaking of sleeping in, my oldest son, Walker, is a sleep champion. If there were awards for longest sleep, deepest sleeper, and least likely to be awakened by a nuclear crisis, these would be bestowed upon Walker. On Saturdays, I feel like I am being abusive by making him get up before 11am. The amount of effort it takes for him to put his feet on the floor is astounding! How many of you mothers use "Feet on the floor!" as your code for, "don't make me ask you more than two times to get up!" It is probably a scientific fact that 'feet on the floor' is the only way to ensure that these people will get up. Even turning on the light and ripping the covers off are not adequate for getting Walker up.
On a side note, a friend of mine's dad used to wake up his 5 boys (ay caramba!) with water guns. I haven't tried this yet because it would require too much thinking and assembly in the morning. But, it intrigues me nonetheless!
So, yes, you can just know that whatever child you were born with first- whether they are easygoing or difficult, the second child will be the complete opposite. Walker was born with the most calm affect you have ever seen. As a baby, I would bring him to restaurants with me and a friend, and he would literally sit and just look around- completely content to just hang out. It was ME in a male, baby body!!
(I have often said that "hanging out" is my spiritual gift)
I remember having one mother so alarmed by his calm-ness that she suggested I have his hearing tested.
He is still that calm, easygoing guy. So, you can imagine when Liam hit the scene- our calm, little world was turned upside down!!! (easy does it, almost too many exclamation points)
I thought I would talk a little bit today about the siblings of our autistic children. So much emphasis has been placed on the research and the autistic children themselves. And, rightly so. The research is going to be the thing that hopefully changes the diagnoses and ultimately our lives for the better. And, there is a lot more information on the autism itself which helps the public understand what it is all about.
But less understood is the role that siblings play in the care-taking of these children. These kids have to grow up so fast. They are not allowed to have their own needs and concerns because they live with an autistic sibling that overshadows them.
It has also been hard to watch sometimes as Walker longs to have an emotional connection with his brother. But, by the very definition of autism- emotional connection and empathy are qualities severely lacking with these children. Many times, Liam will want to 'bond' with Walker by being rough and tumble (sounds like normal boy stuff), but he lacks the social and emotional cues of when it is okay to be rough and when it is just not.
Or, as in the recent season of Parenthood (NBC, Tuesday nights, 9pm CST), when Haddie leaves for college, all her autistic brother can do is play with his toys in front of him and not look her in the eye. It is heartbreaking to watch (I wept!) because it is exactly how it is at home. Haddie feels unimportant and devalued as she has been a huge advocate for her brother his whole life. (If you are not watching this show, stop what you are doing and start from the beginning- the portrayal of Max, the younger bro with ASD, is quite accurate!)
Most of the time, as normal siblings get older, they can set aside their "annoying-ness" and selfish agendas to realize when something greater is going on. If an older child is leaving for a mission trip or camp for several weeks, other siblings can rally and give a somewhat meaningful hug, fist bump, or SOMETHING. But, kids with autism will almost seem numb and unaffected to what is happening.
Or, another example would be if Walker is clearly upset by something happening in his world, it's probably not the best time to gut punch him in the stomach because he walked in front of the TV.
These siblings expect there to be conflict. What brother and sister don't fight?? But, this goes beyond the normal scuffles. These sibs have to be patient and long-suffering. They are forced to see a bigger picture that is difficult for us to do as adults, much less when you are an adolescent. They must learn to deal with the meltdowns that occur when you are trying to do something 'enjoyable' as a family.
There have been many times when I have had to look at Walker and say, "I'm sorry, but for the sake of the peace and harmony of our family, you will need to give up what you want right now for Liam." Almost all of the time, he will concede defeat and give up his cause for the greater good.
Things have gotten better over the past year or so. I think Liam is maturing. But, that doesn't stop him from slapping Walker's brand new glasses on the floor, or yelling, "HEY, WHAT ARE YOU DOING, GET AWAY FROM ME!" when Walker is just simply walking outside of Liam's room. To say that these siblings walk on eggshells is an understatement. The kids with autism didn't ask to born with their diagnosis, and the siblings didn't ask to have a brother or sister with autism. And so begins the difficult task of wrestling with hard issues early on in their lives.
Like anything in the realm of the complicatedness of life, people will say that it is good for them. They'll say it's good for these kids to realize that the world doesn't revolve around them. And, I would agree with that. These siblings have a greater understanding of what suffering is and is not. They have a deeper capacity for empathy. I tend to think Walker may make an amazing therapist one day. I will let him decide for himself what he wants to do, but God may just use him in the lives of others because of what he has had to go through.
But, I want to make sure that we don't take these sibs for granted. These guys need a break from it all. Make sure you are taking time out for just them. Ask them to talk about what it feels like to have a bro or sis with ASD. (autism spectrum disorder- in case I haven't said that before) Ask them if they feel like they need to be heard sometimes. Make sure they have another safe place to go if things at home feel like too much. You don't want them to feel as if they are in a pressure cooker that cannot be turned off. Much like us mommies and daddies, they want to know that someone cares about them and they don't have to carry this huge weight all of the time. One family I know takes their vacation time when their son with autism is away at a special camp for a month. You have to do whatever it takes to get your sanity back.
Walker and I watch Parenthood together. We haven't talked specifically about it, but I think it makes us feel normal. We will make knowing looks at one another when something with Max happens. And, we feel genuine excitement and relief when the parents of Max have a small victory with him.
Other times, jokingly, Walker will refer to "our son" as in, "Mom, our son is getting in trouble outside with the neighborhood kids. You may want to deal with that." We will laugh, and I will say just add it to the counseling bill that is inevitable to follow.
The point is, let's not forget about these little super heroes. Go give them a big hug and tell them how proud of them you are. Or better yet, text them a sweet note or leave one on their bathroom mirror. If they are teenagers, they will likely not respond in kind or at all. But, they will not forget it. This will make their burden just a little bit lighter- if only for a moment.
And, I am sure that you can imagine my less than enthused response to this assault on my sleep and my morning with a sigh and a disgruntled look on my face. Eyes half-closed, breathing heavy, limbs not fully functioning yet- "MOM, Why don't you look happy??!! LOOK HAPPY!!!!!"
This is where I perfected the fake perma-grin- no teeth, just a plastered smile, with my eyes still closed. From this point, I go through the motions of shuffling feet into the kitchen to pour a bowl of cereal, put it on the table, crawl back into bed, and pray that he would eat his cereal slowly enough to give me ten extra minutes of sleep.
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| It IS hard to be mad at this face for TOO long! What a smile that boy has! |
Sometimes I wish I was a morning person, but,... alas, I am not. I long to be one of those people who slaps their knees when they get up and can't wait to tackle the day and whatever problems arise. I wish that the world and work day didn't really start until 10am. This seems reasonable to me. Leisurely starting the day at 8am, slow drink of coffee (I am picturing the Folgers commercial with the woman staring out at the sun coming through the window), the kids come in around 8:30-8:45-very slowly- giving me a big hug and kiss, "mom, how was your sleep?" Because I have had this quiet time to myself AND a full 10 hours of sleep, I am sweetly humming to myself and whipping up blueberry scones and fresh squeezed orange juice. "I'm such a good mother," I think to myself.
Nope. This is not our life.
And whoever the genius on the school board that makes the older kids get on the bus at 6:50am is clearly one of you morning people. (said with disdain and judgment)
I know, I know. My utopian dream of late start mornings is just that--a dream. But, this is why we all need each other. Our differences are what makes the world go 'round. I just happen to think that night owls like me are better people, in general. ;)
I wish that I could operate a giant fader, like on a music console, that slowly fades the day in.
Speaking of sleeping in, my oldest son, Walker, is a sleep champion. If there were awards for longest sleep, deepest sleeper, and least likely to be awakened by a nuclear crisis, these would be bestowed upon Walker. On Saturdays, I feel like I am being abusive by making him get up before 11am. The amount of effort it takes for him to put his feet on the floor is astounding! How many of you mothers use "Feet on the floor!" as your code for, "don't make me ask you more than two times to get up!" It is probably a scientific fact that 'feet on the floor' is the only way to ensure that these people will get up. Even turning on the light and ripping the covers off are not adequate for getting Walker up.
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| The Professional Sleeper at work! |
On a side note, a friend of mine's dad used to wake up his 5 boys (ay caramba!) with water guns. I haven't tried this yet because it would require too much thinking and assembly in the morning. But, it intrigues me nonetheless!
So, yes, you can just know that whatever child you were born with first- whether they are easygoing or difficult, the second child will be the complete opposite. Walker was born with the most calm affect you have ever seen. As a baby, I would bring him to restaurants with me and a friend, and he would literally sit and just look around- completely content to just hang out. It was ME in a male, baby body!!
(I have often said that "hanging out" is my spiritual gift)
I remember having one mother so alarmed by his calm-ness that she suggested I have his hearing tested.
He is still that calm, easygoing guy. So, you can imagine when Liam hit the scene- our calm, little world was turned upside down!!! (easy does it, almost too many exclamation points)
I thought I would talk a little bit today about the siblings of our autistic children. So much emphasis has been placed on the research and the autistic children themselves. And, rightly so. The research is going to be the thing that hopefully changes the diagnoses and ultimately our lives for the better. And, there is a lot more information on the autism itself which helps the public understand what it is all about.
But less understood is the role that siblings play in the care-taking of these children. These kids have to grow up so fast. They are not allowed to have their own needs and concerns because they live with an autistic sibling that overshadows them.
It has also been hard to watch sometimes as Walker longs to have an emotional connection with his brother. But, by the very definition of autism- emotional connection and empathy are qualities severely lacking with these children. Many times, Liam will want to 'bond' with Walker by being rough and tumble (sounds like normal boy stuff), but he lacks the social and emotional cues of when it is okay to be rough and when it is just not.
Or, as in the recent season of Parenthood (NBC, Tuesday nights, 9pm CST), when Haddie leaves for college, all her autistic brother can do is play with his toys in front of him and not look her in the eye. It is heartbreaking to watch (I wept!) because it is exactly how it is at home. Haddie feels unimportant and devalued as she has been a huge advocate for her brother his whole life. (If you are not watching this show, stop what you are doing and start from the beginning- the portrayal of Max, the younger bro with ASD, is quite accurate!)
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| Haddie (left) with Max (right) as they go to a dinosaur museum. Haddie didn't want to go in the first place, but went to make her parents and Max happy. Watch this show!! It's amazing! |
Most of the time, as normal siblings get older, they can set aside their "annoying-ness" and selfish agendas to realize when something greater is going on. If an older child is leaving for a mission trip or camp for several weeks, other siblings can rally and give a somewhat meaningful hug, fist bump, or SOMETHING. But, kids with autism will almost seem numb and unaffected to what is happening.
Or, another example would be if Walker is clearly upset by something happening in his world, it's probably not the best time to gut punch him in the stomach because he walked in front of the TV.
These siblings expect there to be conflict. What brother and sister don't fight?? But, this goes beyond the normal scuffles. These sibs have to be patient and long-suffering. They are forced to see a bigger picture that is difficult for us to do as adults, much less when you are an adolescent. They must learn to deal with the meltdowns that occur when you are trying to do something 'enjoyable' as a family.
There have been many times when I have had to look at Walker and say, "I'm sorry, but for the sake of the peace and harmony of our family, you will need to give up what you want right now for Liam." Almost all of the time, he will concede defeat and give up his cause for the greater good.
Things have gotten better over the past year or so. I think Liam is maturing. But, that doesn't stop him from slapping Walker's brand new glasses on the floor, or yelling, "HEY, WHAT ARE YOU DOING, GET AWAY FROM ME!" when Walker is just simply walking outside of Liam's room. To say that these siblings walk on eggshells is an understatement. The kids with autism didn't ask to born with their diagnosis, and the siblings didn't ask to have a brother or sister with autism. And so begins the difficult task of wrestling with hard issues early on in their lives.
Like anything in the realm of the complicatedness of life, people will say that it is good for them. They'll say it's good for these kids to realize that the world doesn't revolve around them. And, I would agree with that. These siblings have a greater understanding of what suffering is and is not. They have a deeper capacity for empathy. I tend to think Walker may make an amazing therapist one day. I will let him decide for himself what he wants to do, but God may just use him in the lives of others because of what he has had to go through.
But, I want to make sure that we don't take these sibs for granted. These guys need a break from it all. Make sure you are taking time out for just them. Ask them to talk about what it feels like to have a bro or sis with ASD. (autism spectrum disorder- in case I haven't said that before) Ask them if they feel like they need to be heard sometimes. Make sure they have another safe place to go if things at home feel like too much. You don't want them to feel as if they are in a pressure cooker that cannot be turned off. Much like us mommies and daddies, they want to know that someone cares about them and they don't have to carry this huge weight all of the time. One family I know takes their vacation time when their son with autism is away at a special camp for a month. You have to do whatever it takes to get your sanity back.
Walker and I watch Parenthood together. We haven't talked specifically about it, but I think it makes us feel normal. We will make knowing looks at one another when something with Max happens. And, we feel genuine excitement and relief when the parents of Max have a small victory with him.
Other times, jokingly, Walker will refer to "our son" as in, "Mom, our son is getting in trouble outside with the neighborhood kids. You may want to deal with that." We will laugh, and I will say just add it to the counseling bill that is inevitable to follow.
The point is, let's not forget about these little super heroes. Go give them a big hug and tell them how proud of them you are. Or better yet, text them a sweet note or leave one on their bathroom mirror. If they are teenagers, they will likely not respond in kind or at all. But, they will not forget it. This will make their burden just a little bit lighter- if only for a moment.
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