Life is pretty funny, don't you agree?
I mean, here I am, alone in my house with only an old, wrinkly dog. This dog is either snoring so loudly it's distracting, walking around clickety-clacking on the wood floors, or worst of all, licking his privates with the grossest, mouthiest sounds you've ever heard. It's Jabba the Hutt sounds magnified 100 times. But even with all of these sounds, it's quiet.
Too quiet.
I am struck by the titles of my blog posts of yore-that I was in such survival mode for so long that I almost don't remember what "normal" was like. It was heavy combat for many, many years. Days seemed like months and years felt like decades. I cried ALOT back then. I longed for the days when I could just sit in a quiet home and not be bothered for hours on end. When I could have the windows up giving much-needed fresh air, the music on, the tv turned loud, and NO ONE would interrupt me and tell me I couldn't have all of those things going at the same time. Oh, and I would have a glass of wine in my hand and laugh and dance "like no one was watching" and gorge myself with chocolates and bon bons because life would be so wonderful.
And then it happens...
They get busy. School gets more involved and there are rehearsals and new schedules that take them away from you. Or, worse, they move away...how dare they! They take their belongings and move to a different home with another child their own age and make new friends and have new experiences that you know nothing about. They become involved with activities that they never showed interest in before. They tell you about professors that you do not know and classes they are excited about. They grow up into humans. They are monsters no more. I mean, don't get me wrong, I do still have to deal with one grumpy soldier who fires at will when I pick him up 30 seconds too late or if I smile the wrong way.
But, I wasn't expecting this. I wasn't prepared for the quiet.
I find myself not dancing and not singing. I was so sure this would happen. I had the mental calendar in my mind counting down the days when I would no longer have to hear my name called over and over for mindless requests. Instead I find myself not knowing what to do. "Who am I?" rings out in my head.
Life is ironic and bittersweet. The things you want in one season are the things you long for in the next.
So what is the moral of the story? (I am a positive person. I cannot leave anything on a sour note.) Will I say to cherish every moment? To take a mental snapshot of each season and count the cost and the blessings? Will I say to be present even in the pain of life? Will I say to "do you" and go find your passions and your heart and all the things that make you tick? Will I say to pray and trust that God and all of his crazy Grace will carry you?
Yes.
To all of it. No season, whether light or dark, will last as long as you think.
Showing posts with label parenting. Show all posts
Showing posts with label parenting. Show all posts
Tuesday, October 18, 2016
Saturday, January 23, 2016
Dancing Barista
Wintry days are here, and we have a whopping 6-8 inches here in the mid-state of Tennessee. That may as well be 48 inches to us southerners who gasp and shriek with delight at this alien form of white powder that rains down upon us! Roads are closed, businesses shut down, so there is nothing left to do other than to....
HAVE AN IMPROMPTU DANCE PARTY IN THE KITCHEN WHILE DOING THE DISHES!!!
Well, this is what I tried to do when I realized that no one else was home. Kanye came on loudly and I was lip-syncing and white girl dancing so hard when I saw something out of the corner of my eye.
I looked out the window and saw the battle-worn face of Liam coming home from sledding and playing in the snow. I only had a quick 3-4 seconds before I could turn the speakers down so that he would not have a conniption fit at the volume in which "Touch the Sky" was blaring. I had a tough choice to make- continue my kitchen concert and risk his rage, or turn it down and pretend like I had been heating up his hot chocolate the whole time.
I decided to take a risk-I mean, hey! This is my house, dadgummit (who's mom from Bama used that word when she was mad?!) I pay the bills and feed everyone (most of the time), so I can have the volume any way I want it!!!!
When he came in, he predictably rounded the corner with disapproving eyes and shook his head. Like he was the parent and he found me underage drinking in my closet.
"MOM, ...WHY? WHY, MOM??!!
Funtime over. Somehow my 'running man' with a huge grin on my face did not get the smirk I was looking for. I slowly went back to the speakers and turned them down, and eventually off.
I never know which mood I will get back. Sometimes I will get the playful side and get a few more fun moments out of it, but most of the time, this is the reality. Hard to know what's autism and what's teen annoyance.
So, I decided to take this rare day of "nothingness" and get into my creativity of writing. I'm always glad when I do, but it seems so hard to start. Story of my life.
I got some inspiration to write after a friend sent me a touching story about a man named Donald Grey Triplett. Donald was the first person ever to receive an autism diagnosis. The story details are unique and yet the same as those of us grappling with those first few years of autism. His parents did not know what was wrong with their child. After a doctor said there was nothing he could do, they made the difficult choice to institutionalize Donald because that was what you did in that day. Anyone that was seen as out of the ordinary wasted away in a sterile mental hospital. The doctor even told them to move on and forget about Donald- that somehow that was the best thing for him and his parents.
But, the parents never forgot about Donald. They decided that they would not allow him to grow up as a patient, but a person with a story. A story that mattered. Their perseverance and hard work made him the man that he is today. He is remarkably still alive at 82 years old! He plays golf and lives independently in the house he grew up in.
But the most incredible part of the story is how his small-town community rallied around him and accepted him. In the town of Forest, Mississippi, in the 1940's and 50's, when difference and diversity was not something embraced or encouraged, this community decided to make him one of their own. They welcomed him in their schools, their restaurants, and businesses. He even made some of the girls swoon!!
Which brought me back to my own situation and how I have chosen to make Liam a part of his greater community. This past year we learned that Liam was not doing so great in school. The IEP that he had was not really working any more and we, wait, what am I saying, I had to make the difficult decision to place Liam on a special needs track. This track would knock him out of the traditional path that most students take. There is even a school close to our home that serves children with his diagnosis, and I have had many people ask me why I have chosen to keep him in the public system here.
And my decision is simple. It comes down to community. The way the kids rally around him at school events and the way his church youth group members high five him when he walks in the door is worth it. My prayer is that he will continue to have community even when it is not in the bubble of school. This will be the real test. Will people accept him the way he is? Will he be given opportunities to do meaningful work? Will an employer see the gifts he has to offer the world and take a chance on him?
These are answers I simply do not have. But, the tide is turning and more and more people are realizing the importance of including those with special needs in the work force.
And just when I was finishing this post, another sweet friend sent me a link to a young man hired by Starbucks as a barista. He has autism and a movement disorder, so the Starbucks employees have dubbed him the "dancing barista". They have taken something that most would maybe see as a disability and reframed it as something with positivity and light.
See his awesome video here.
I don't know you Donald and Sam, but I am grateful for you. Keep paving the way!
And, to the people in the world who go the extra mile for those with disabilities, you are the angels we need.
Thank you.
HAVE AN IMPROMPTU DANCE PARTY IN THE KITCHEN WHILE DOING THE DISHES!!!
Well, this is what I tried to do when I realized that no one else was home. Kanye came on loudly and I was lip-syncing and white girl dancing so hard when I saw something out of the corner of my eye.
I looked out the window and saw the battle-worn face of Liam coming home from sledding and playing in the snow. I only had a quick 3-4 seconds before I could turn the speakers down so that he would not have a conniption fit at the volume in which "Touch the Sky" was blaring. I had a tough choice to make- continue my kitchen concert and risk his rage, or turn it down and pretend like I had been heating up his hot chocolate the whole time.
I decided to take a risk-I mean, hey! This is my house, dadgummit (who's mom from Bama used that word when she was mad?!) I pay the bills and feed everyone (most of the time), so I can have the volume any way I want it!!!!
 |
| This is what I looked like in my kitchen! |
When he came in, he predictably rounded the corner with disapproving eyes and shook his head. Like he was the parent and he found me underage drinking in my closet.
"MOM, ...WHY? WHY, MOM??!!
Funtime over. Somehow my 'running man' with a huge grin on my face did not get the smirk I was looking for. I slowly went back to the speakers and turned them down, and eventually off.
I never know which mood I will get back. Sometimes I will get the playful side and get a few more fun moments out of it, but most of the time, this is the reality. Hard to know what's autism and what's teen annoyance.
So, I decided to take this rare day of "nothingness" and get into my creativity of writing. I'm always glad when I do, but it seems so hard to start. Story of my life.
I got some inspiration to write after a friend sent me a touching story about a man named Donald Grey Triplett. Donald was the first person ever to receive an autism diagnosis. The story details are unique and yet the same as those of us grappling with those first few years of autism. His parents did not know what was wrong with their child. After a doctor said there was nothing he could do, they made the difficult choice to institutionalize Donald because that was what you did in that day. Anyone that was seen as out of the ordinary wasted away in a sterile mental hospital. The doctor even told them to move on and forget about Donald- that somehow that was the best thing for him and his parents.
 |
| Donald Triplett-wasn't he precious? |
But, the parents never forgot about Donald. They decided that they would not allow him to grow up as a patient, but a person with a story. A story that mattered. Their perseverance and hard work made him the man that he is today. He is remarkably still alive at 82 years old! He plays golf and lives independently in the house he grew up in.
But the most incredible part of the story is how his small-town community rallied around him and accepted him. In the town of Forest, Mississippi, in the 1940's and 50's, when difference and diversity was not something embraced or encouraged, this community decided to make him one of their own. They welcomed him in their schools, their restaurants, and businesses. He even made some of the girls swoon!!
Which brought me back to my own situation and how I have chosen to make Liam a part of his greater community. This past year we learned that Liam was not doing so great in school. The IEP that he had was not really working any more and we, wait, what am I saying, I had to make the difficult decision to place Liam on a special needs track. This track would knock him out of the traditional path that most students take. There is even a school close to our home that serves children with his diagnosis, and I have had many people ask me why I have chosen to keep him in the public system here.
And my decision is simple. It comes down to community. The way the kids rally around him at school events and the way his church youth group members high five him when he walks in the door is worth it. My prayer is that he will continue to have community even when it is not in the bubble of school. This will be the real test. Will people accept him the way he is? Will he be given opportunities to do meaningful work? Will an employer see the gifts he has to offer the world and take a chance on him?
These are answers I simply do not have. But, the tide is turning and more and more people are realizing the importance of including those with special needs in the work force.
And just when I was finishing this post, another sweet friend sent me a link to a young man hired by Starbucks as a barista. He has autism and a movement disorder, so the Starbucks employees have dubbed him the "dancing barista". They have taken something that most would maybe see as a disability and reframed it as something with positivity and light.
See his awesome video here.
I don't know you Donald and Sam, but I am grateful for you. Keep paving the way!
And, to the people in the world who go the extra mile for those with disabilities, you are the angels we need.
Thank you.
Tuesday, June 30, 2015
Summertime Rulez
Ahhhh Summer!!!!!
The time of year where we can let the bedtime routine go. The time of year when the sun is hot, the pool feels welcoming, and fresh fruits taste amazing! This is the time that most of look forward to all year!
But, for families of autism, summer can be the most stressful, nerve-wracking, patience-disturbing time of all.
Our kiddos with autism crave control and structure. It is in their DNA. This is why they love school so much. School is a bubble. It is a test tube of endless lists and tasks that are implemented by teachers that are trained to do such things. Home is a battleground of pesky siblings (who know the autistic's every button to push) and of over-tired parents who are just trying not to drown in their own problems of keeping it all together.
As one mom said to me in tears, "why can't I seem to get it together enough to have the good report that my son's teachers seem to have of him?" In other words, why do our children seem to behave better at school than they do with us at home?
I have a few theories about this:
-First of all, as stated earlier, school has all the resources needed to set these little people up for success. There are at least 2-3 more adults in the room than at home. (hello!! Wouldn't we all love at least 4 more sets of hands at home?) There are other children that are NOT related to them that can distract them from whatever is bothering them in the moment. (aaaaauuuuhhhhhh!! This shirt has a tag in it!!) Also, this is what these certifiably insane people have SIGNED UP to do in life. Yes! They have signed up to teach/corral/herd these children by CHOICE! So that means that they have had more training and (hopefully) more patience than you ever will. They can be almost perfect with scheduling because they have to in order to keep more than three children alive!
-Secondly, our children will always be more well-behaved with strangers. This is a good thing! We want our kids to act out with us because then we know they feel safe. We tend to "show our butts" when we feel like we can. We are our truest selves with those that we know will not abandon us.
-Thirdly, these teachers can do all of their schedules, ABA appropriate rigors, and rule-keeping because THEY GET TO GO HOME AT THE END OF THE DAY.
Let's just cut to the chase. Summer is hard. Breaks are hard. So here are a few things I have found to help make it through.
1. Every summer when Liam was younger I poured over websites of churches and camps to see who would be able to handle my little bundle of joy. Sometimes my searches came up short, but I eventually landed on a YMCA camp through Easter Seals. This would be more geared for elementary age children through high school, but well worth looking into to see if they have a program that would work for your child. We also did Vacation Bible Schools-several of them! It could be that a particular church has a ministry for special needs children. Or, maybe you could volunteer to go with your child and act as an aid for others. Obviously, if you're looking for a break, that is not the best option, but if you are looking for something to get you and your child out of the house, it could be ideal.
2. Schedule your down time!! This is my least favorite. By now, if you've kept up with this blog you know how much I hate schedules. But, for everyone's sanity, I would at least try to have a skeleton of a schedule for each day. Your schedule may have a large amount of digital activity on there (i.e. THANK YOU, JESUS, FOR IPADS!) This is okay. We're in summer mode and their brains are not going to rot if they watch several shows in a row. This is parenting bootcamp, let's not kill ourselves here.
3. (in the same vein) Let go of Mommy/Daddy guilt. This may be your hardest task yet. Let go of trying to have it all together. You're exhausted, and so are they. If you need a nap, plug in the iPad and let that be their quiet time. Stop comparing yourself to their teachers and other parents on Facebook. Trust me, they're using the iPad too. That's how they have time to post on Facebook.
4. I realize that not all parents may have the luxury of taking a trip. Maybe a trip is the worst thing in the world for your family. Maybe it's just easier staying at home. BUT, every summer, we would plan a trip to the beach with my parents. I can say that I have been blessed with two people who, are not perfect, but love my children well and do pretty good with having them around. They have had to learn, like we all have, to roll with the punches and parent a little differently than maybe they did with me. This is a week that we always look forward to because it allows us to get away from our norm and rest. I encourage all of my readers to take the time to find rest--and water. Water is healing and may be the one thing that helps calm your little one.
5. Find something to do once a week that can become a summertime routine. One thing that we used to do each week was go to story time at our local library. Nashville has a beautiful library in the downtown area and has an award-winning children's outreach through their puppetry program. This is a free program and they have a beautiful outdoor area where you can picnic and kids can run around without people staring or judging you for their squeals of joy. I would encourage you to find something that you can do as a family once a week that helps both of you. It also teaches your little one to adapt to the outside world. They have to learn how to sit and behave at some point, and this could be a safe way to do it.
6. EAT LOTS OF ICE CREAM
7. Remember to laugh at yourselves.
8. Phone a friend.
9. Let go of household chores for maybe one day. (or 5)
10. Be kind to yourself.
Wake up. Repeat.
The time of year where we can let the bedtime routine go. The time of year when the sun is hot, the pool feels welcoming, and fresh fruits taste amazing! This is the time that most of look forward to all year!
But, for families of autism, summer can be the most stressful, nerve-wracking, patience-disturbing time of all.
Our kiddos with autism crave control and structure. It is in their DNA. This is why they love school so much. School is a bubble. It is a test tube of endless lists and tasks that are implemented by teachers that are trained to do such things. Home is a battleground of pesky siblings (who know the autistic's every button to push) and of over-tired parents who are just trying not to drown in their own problems of keeping it all together.
As one mom said to me in tears, "why can't I seem to get it together enough to have the good report that my son's teachers seem to have of him?" In other words, why do our children seem to behave better at school than they do with us at home?
I have a few theories about this:
-First of all, as stated earlier, school has all the resources needed to set these little people up for success. There are at least 2-3 more adults in the room than at home. (hello!! Wouldn't we all love at least 4 more sets of hands at home?) There are other children that are NOT related to them that can distract them from whatever is bothering them in the moment. (aaaaauuuuhhhhhh!! This shirt has a tag in it!!) Also, this is what these certifiably insane people have SIGNED UP to do in life. Yes! They have signed up to teach/corral/herd these children by CHOICE! So that means that they have had more training and (hopefully) more patience than you ever will. They can be almost perfect with scheduling because they have to in order to keep more than three children alive!
-Secondly, our children will always be more well-behaved with strangers. This is a good thing! We want our kids to act out with us because then we know they feel safe. We tend to "show our butts" when we feel like we can. We are our truest selves with those that we know will not abandon us.
-Thirdly, these teachers can do all of their schedules, ABA appropriate rigors, and rule-keeping because THEY GET TO GO HOME AT THE END OF THE DAY.
Let's just cut to the chase. Summer is hard. Breaks are hard. So here are a few things I have found to help make it through.
1. Every summer when Liam was younger I poured over websites of churches and camps to see who would be able to handle my little bundle of joy. Sometimes my searches came up short, but I eventually landed on a YMCA camp through Easter Seals. This would be more geared for elementary age children through high school, but well worth looking into to see if they have a program that would work for your child. We also did Vacation Bible Schools-several of them! It could be that a particular church has a ministry for special needs children. Or, maybe you could volunteer to go with your child and act as an aid for others. Obviously, if you're looking for a break, that is not the best option, but if you are looking for something to get you and your child out of the house, it could be ideal.
2. Schedule your down time!! This is my least favorite. By now, if you've kept up with this blog you know how much I hate schedules. But, for everyone's sanity, I would at least try to have a skeleton of a schedule for each day. Your schedule may have a large amount of digital activity on there (i.e. THANK YOU, JESUS, FOR IPADS!) This is okay. We're in summer mode and their brains are not going to rot if they watch several shows in a row. This is parenting bootcamp, let's not kill ourselves here.
 |
| How do they come out of the womb knowing how to do technology?! |
3. (in the same vein) Let go of Mommy/Daddy guilt. This may be your hardest task yet. Let go of trying to have it all together. You're exhausted, and so are they. If you need a nap, plug in the iPad and let that be their quiet time. Stop comparing yourself to their teachers and other parents on Facebook. Trust me, they're using the iPad too. That's how they have time to post on Facebook.
4. I realize that not all parents may have the luxury of taking a trip. Maybe a trip is the worst thing in the world for your family. Maybe it's just easier staying at home. BUT, every summer, we would plan a trip to the beach with my parents. I can say that I have been blessed with two people who, are not perfect, but love my children well and do pretty good with having them around. They have had to learn, like we all have, to roll with the punches and parent a little differently than maybe they did with me. This is a week that we always look forward to because it allows us to get away from our norm and rest. I encourage all of my readers to take the time to find rest--and water. Water is healing and may be the one thing that helps calm your little one.
 |
| Nashville Public Library Story Time |
6. EAT LOTS OF ICE CREAM
7. Remember to laugh at yourselves.
8. Phone a friend.
9. Let go of household chores for maybe one day. (or 5)
10. Be kind to yourself.
Wake up. Repeat.
Tuesday, October 28, 2014
Sleepovers
We had our first sleepover....
I was so nervous to ask. What if this boy says no? What if he was just being nice to Liam at school, but had NO intentions of striking up a friendship? What if he says YES? Then what?!!
I wouldn't know unless I asked.
For months, Liam had been talking about his friend, Zach, that happened to be in band with him. Liam talked about how cool he was and how he was always getting "first chair" in band-playing tests. Because, with Liam, everything is a contest. I have never met someone more competitive than my child. I don't know if it's better or worse that his mother simply doesn't care about winning per se. I just don't have a competitive bone in my body. So, maybe we cancel each other out? - or, maybe his competitive nature makes me want to drink...not sure.
But, in his talking about Zach, there was a longing. A longing to have a friend. He saw his brother have friends over and spend the night out- why couldn't he? And, I don't have to remind you of all the years I have been writing about birthday parties. Birthdays are painful reminders that he, more often than not, doesn't always get those invites.
So, I prayed. I have been praying this prayer for a long time actually. Lord, just one friend. That's all. I would love it if you just provided one person that would see Liam for who he is and accept him-nay, ADORE him the way we all do.
(Now, I don't want to freak this kid out. I mean, I'm sure more than one friend will come along....hahahahahahahaha...seriously, though, will you be his friend???!!!)
So, needless to say, his mom said yes, and (gasp!) that Zach was really looking forward to coming over!
When I told Liam about this, he was beside himself! Pacing, eyes staring off into space as his wheels turned thinking about the possibilities of the slumber party events.
I imagined his thoughts were something like this:
"First, I'll show him my video games and how I like to play them. I will win every game we play. Then, we will go outside. Then, he will watch me play a computer game. I will win all of those as well. The end."
The whole back and forth thing hasn't been nuanced quite yet in our house. He would prefer if everyone just did exactly what he wanted to do the entire time, no questions asked. We're still tweaking that one.
(hmmm...sounds like a few adults I know as well...)
So, in an effort to have a back up plan in case Liam sat in front of a screen for 6 hours while his friend twirled his thumbs, I decided that we needed a destination.
"Where do you want to go with Zach when he comes over?"
"Chuck E. Cheese".
I panicked. Do 13 years olds still think Chuck E. Cheese is cool? Doesn't Charles du Fromage (what we used to say in order to "hide" it from the kids) peak around age 9-10?
I reluctantly agreed.
The day came for Zach to come over. Zach rode the special ed bus to our house like a champ! Didn't even bat an eye! He earned major friend points in my book for being willing to be seen on the not-so-short bus. (I don't know about your school, but the SPED bus at ours is SWANK! It is not short, and it is really nice!)
He walked in, confident, but not too much. He was great with Liam. He was patient, kind, funny...do I sound desperate? Because I totally am. I had to tell myself to quit asking him if he was having a good time, or if he needed another snack, or if I bought the right snacks, or if I needed to pay him money to stay. (Okay, I didn't ask that, but I thought it!)
The thing of it was, that I think Zach really DID want to be there. He knows that Liam is different than he is, but it's not a deficit to him- it's a bonus. He totally thinks Liam's ways of doing things are funny. And, he gets a kick out of seeing him excited about a video game, or an 89 yard touchdown on YouTube.
He also knew when to set boundaries with Liam and when to let the small stuff fly by! He knew that Liam would be anxious about what time they would be going to bed (there would be no improvising or playing "outside the scale" on the schedule!), so Zach said, "you know what Liam, let's play one more round of USA Soccer on Xbox and then go to bed at 9:30"!
I have to admit, I was high-fiving myself at that point!!
Call it what you will, but as much as people my age want to complain about the new generation coming up as being emotionally stunted from technology, or having issues with socialization, or even being exposed to too much too fast, I have to say that there is a new wave of compassion and empathy that my generation missed out on.
These kids have been exposed to children of special needs from the get-go. No longer are the SPED children sent to another building to be "dealt" with. Kids with autism, Down Syndrome, cerebral palsy, and other neurological disorders are included in the mainstream classrooms. Kids today most likely have seen a child with autism have a nervous breakdown in the middle of class, or watched a child in a wheelchair struggle to move around a classroom. And, because of that exposure, they are not intimidated by differences- they embrace them. I do not think I would have been that patient or kind as a middle schooler. I was much too impressed with myself to give unconditionally to others with differences. So to now see these kids getting involved and helping their peers is so very inspiring!!!!
Now, I do know there are sad stories of bullies and mean-spirited kids who have taken advantage of this inclusion of SPED children. I do not pretend to believe that there will never be someone who will be mean to my son. But, the overwhelming sense that I have gotten from all the classrooms my son has been in is that once his peers know what is going on with him, they are ready and willing to help him along. And Zach is a great example of someone willing to go the extra mile!
His dad picked him up the next morning, and we have seen this family several weekends this fall at various school events. Zach even plans to have Liam at his house this weekend, Lord-willing! :)
The other day I asked Liam about Zach and his friendship with him. Liam replied, "Sometimes Zach disobeys me."
(Sigh)
Like I said, little tweaking here and there.
Baby steps.
My hope is there will be more steps, and more friends like Zach.
And maybe, just maybe, this journey won't be so lonely after all.
I was so nervous to ask. What if this boy says no? What if he was just being nice to Liam at school, but had NO intentions of striking up a friendship? What if he says YES? Then what?!!
I wouldn't know unless I asked.
For months, Liam had been talking about his friend, Zach, that happened to be in band with him. Liam talked about how cool he was and how he was always getting "first chair" in band-playing tests. Because, with Liam, everything is a contest. I have never met someone more competitive than my child. I don't know if it's better or worse that his mother simply doesn't care about winning per se. I just don't have a competitive bone in my body. So, maybe we cancel each other out? - or, maybe his competitive nature makes me want to drink...not sure.
But, in his talking about Zach, there was a longing. A longing to have a friend. He saw his brother have friends over and spend the night out- why couldn't he? And, I don't have to remind you of all the years I have been writing about birthday parties. Birthdays are painful reminders that he, more often than not, doesn't always get those invites.
So, I prayed. I have been praying this prayer for a long time actually. Lord, just one friend. That's all. I would love it if you just provided one person that would see Liam for who he is and accept him-nay, ADORE him the way we all do.
(Now, I don't want to freak this kid out. I mean, I'm sure more than one friend will come along....hahahahahahahaha...seriously, though, will you be his friend???!!!)
So, needless to say, his mom said yes, and (gasp!) that Zach was really looking forward to coming over!
When I told Liam about this, he was beside himself! Pacing, eyes staring off into space as his wheels turned thinking about the possibilities of the slumber party events.
I imagined his thoughts were something like this:
"First, I'll show him my video games and how I like to play them. I will win every game we play. Then, we will go outside. Then, he will watch me play a computer game. I will win all of those as well. The end."
The whole back and forth thing hasn't been nuanced quite yet in our house. He would prefer if everyone just did exactly what he wanted to do the entire time, no questions asked. We're still tweaking that one.
(hmmm...sounds like a few adults I know as well...)
So, in an effort to have a back up plan in case Liam sat in front of a screen for 6 hours while his friend twirled his thumbs, I decided that we needed a destination.
"Where do you want to go with Zach when he comes over?"
"Chuck E. Cheese".
I panicked. Do 13 years olds still think Chuck E. Cheese is cool? Doesn't Charles du Fromage (what we used to say in order to "hide" it from the kids) peak around age 9-10?
I reluctantly agreed.
 |
| Yes! You are!! |
The day came for Zach to come over. Zach rode the special ed bus to our house like a champ! Didn't even bat an eye! He earned major friend points in my book for being willing to be seen on the not-so-short bus. (I don't know about your school, but the SPED bus at ours is SWANK! It is not short, and it is really nice!)
He walked in, confident, but not too much. He was great with Liam. He was patient, kind, funny...do I sound desperate? Because I totally am. I had to tell myself to quit asking him if he was having a good time, or if he needed another snack, or if I bought the right snacks, or if I needed to pay him money to stay. (Okay, I didn't ask that, but I thought it!)
The thing of it was, that I think Zach really DID want to be there. He knows that Liam is different than he is, but it's not a deficit to him- it's a bonus. He totally thinks Liam's ways of doing things are funny. And, he gets a kick out of seeing him excited about a video game, or an 89 yard touchdown on YouTube.
He also knew when to set boundaries with Liam and when to let the small stuff fly by! He knew that Liam would be anxious about what time they would be going to bed (there would be no improvising or playing "outside the scale" on the schedule!), so Zach said, "you know what Liam, let's play one more round of USA Soccer on Xbox and then go to bed at 9:30"!
I have to admit, I was high-fiving myself at that point!!
Call it what you will, but as much as people my age want to complain about the new generation coming up as being emotionally stunted from technology, or having issues with socialization, or even being exposed to too much too fast, I have to say that there is a new wave of compassion and empathy that my generation missed out on.
These kids have been exposed to children of special needs from the get-go. No longer are the SPED children sent to another building to be "dealt" with. Kids with autism, Down Syndrome, cerebral palsy, and other neurological disorders are included in the mainstream classrooms. Kids today most likely have seen a child with autism have a nervous breakdown in the middle of class, or watched a child in a wheelchair struggle to move around a classroom. And, because of that exposure, they are not intimidated by differences- they embrace them. I do not think I would have been that patient or kind as a middle schooler. I was much too impressed with myself to give unconditionally to others with differences. So to now see these kids getting involved and helping their peers is so very inspiring!!!!
Now, I do know there are sad stories of bullies and mean-spirited kids who have taken advantage of this inclusion of SPED children. I do not pretend to believe that there will never be someone who will be mean to my son. But, the overwhelming sense that I have gotten from all the classrooms my son has been in is that once his peers know what is going on with him, they are ready and willing to help him along. And Zach is a great example of someone willing to go the extra mile!
His dad picked him up the next morning, and we have seen this family several weekends this fall at various school events. Zach even plans to have Liam at his house this weekend, Lord-willing! :)
The other day I asked Liam about Zach and his friendship with him. Liam replied, "Sometimes Zach disobeys me."
(Sigh)
Like I said, little tweaking here and there.
Baby steps.
My hope is there will be more steps, and more friends like Zach.
And maybe, just maybe, this journey won't be so lonely after all.
Tuesday, May 6, 2014
Italian Siesta
I came home yesterday the same way I do most days. Armloads of Trader Joe's bags, exhausted and wiped out. My body felt so tired and depleted, I had to lay down for a quick power nap.
Unfortunately, this is not uncommon for me. I was recently diagnosed with something called Hashimoto's disease, which is a type of hypothyroidism, or Japanese for "no more happiness". Actually, I don't know what Hashimoto is named for. Maybe it was for the Japanese god of narcolepsy. I don't know. What I do know is for the millions of people who have this disease, it is crippling. The symptoms are unending tiredness, hair loss, weight gain, and endless tv watching.
I have always been tired. An unpopular personality trait in a world that says that napping is an abomination and being tired is equal to weakness. Our culture frowns upon siestas, while the rest of the world naturally shuts down their businesses between the hours of 2-4 to rest, (I'm looking at you, Italy!!) cook their evening meals, and catch up on life. Quality of life is not taken into account in our fast pace, "gotta strike while the iron's hot" way of existing. It is of no wonder that our adrenal glands are screaming at us to slow down!!
And, us mommy's of autism? FUGET ABOUDIT!!!
I would go so far to say when there is anything "extra" in life that you have to deal with in the hustle and bustle of life, it is exhausting. Mothers and fathers dealing with other special needs, learning disabilities, health conditions, ADHD, even a child with emotional instability, can be that extra thing that pushes you over the proverbial edge. A friend of mine has a child that has difficulty just getting along with other children-it is something extra that she has to deal with on top of the other children in her family-and it is exhausting!
And we hate to begrudge our "extra heaping helping of hard" child, but sometimes we do...let's be honest!
As I was laying in bed, life was still happening around me. The groceries needed to be put away, phone calls kept coming in, Liam was coming in and out from playing outside, Walker was studying and doing homework. I felt guilt for not exactly knowing where my child with autism was. I felt shame for not really knowing if my teenager was really studying or playing video games. And, I felt irresponsible for not remembering if I put the milk away or not. But, I quickly shoved all of those pesky emotions down for a few prized moments of sleep.
I woke up groggy and out of it- the worst feeling at the bewitching hour of 5pm. (see Bewitched!) I began researching essential oils that would help with hypothyroidism, exhaustion, and crankiness (funny, they don't have one for the that!). I began to think about all of the other supplements, oils, and holistic medicines that could help my kids. I started down a rabbit trail of research for autism, and alternative medicines used for attention and focus. Fifteen minutes later, I was overwhelmed thinking about adding something else to our already full routine.
And this is when it struck me: I CANNOT HELP MY CHILDREN WHEN I AM DEPLETED!!!!
I CANNOT GIVE TO THEM THAT WHICH I DO NOT GIVE MYSELF!!!!
Isn't this our plight? We spend so much time thinking, loving on, and doing for our own fold when we have nothing to give. I must be willing to research things that will help ME, so that I can, in turn, give to those I love the most.
It's the old, "put the oxygen mask on yourself before you put it on your child" mentality. If we are sucking for air, we cannot possibly be any good for those around us.
As Brene Brown said recently, we all wear exhaustion like it's a badge. We can all one-up each other with stories of our heroism and valor of staying up all night to bake cookies, holding down 4 jobs, stirring dinner, and sewing Suzie's ballet costume, but we cannot tell you the last time we actually felt good.
My son's therapist told me recently that in all of his years of practicing, this is the most anxious group of children he has ever seen. They are all medicated because we expose them to adult-like pressures of having so many balls in the air, that they cannot manage.
IF I AM DEPLETED ALL OF THE TIME, HOW CAN I TEACH MY CHILDREN WHAT IT MEANS TO BE RESTFUL AND PRESENT???
If I am overextending and not paying attention to my own exhaustion, how can I teach them to listen to their bodies?
It's time to stop. It's time to rest.
I closed all the tabs of my computer, and opened one window to ask questions about my own disease on a forum. I got helpful responses, and now it is up to me to take the plunge and try a few things that may work.
I think it may be an uphill battle to introduce the 'Italian siesta' into our culture. We are pretty stuck in our ways as Americans. But, I can introduce that concept of balance and holistic living in my own corner of the world. It begins with me.
Unfortunately, this is not uncommon for me. I was recently diagnosed with something called Hashimoto's disease, which is a type of hypothyroidism, or Japanese for "no more happiness". Actually, I don't know what Hashimoto is named for. Maybe it was for the Japanese god of narcolepsy. I don't know. What I do know is for the millions of people who have this disease, it is crippling. The symptoms are unending tiredness, hair loss, weight gain, and endless tv watching.
I have always been tired. An unpopular personality trait in a world that says that napping is an abomination and being tired is equal to weakness. Our culture frowns upon siestas, while the rest of the world naturally shuts down their businesses between the hours of 2-4 to rest, (I'm looking at you, Italy!!) cook their evening meals, and catch up on life. Quality of life is not taken into account in our fast pace, "gotta strike while the iron's hot" way of existing. It is of no wonder that our adrenal glands are screaming at us to slow down!!
And, us mommy's of autism? FUGET ABOUDIT!!!
 |
| This actually looks good to me right now. |
And we hate to begrudge our "extra heaping helping of hard" child, but sometimes we do...let's be honest!
As I was laying in bed, life was still happening around me. The groceries needed to be put away, phone calls kept coming in, Liam was coming in and out from playing outside, Walker was studying and doing homework. I felt guilt for not exactly knowing where my child with autism was. I felt shame for not really knowing if my teenager was really studying or playing video games. And, I felt irresponsible for not remembering if I put the milk away or not. But, I quickly shoved all of those pesky emotions down for a few prized moments of sleep.
I woke up groggy and out of it- the worst feeling at the bewitching hour of 5pm. (see Bewitched!) I began researching essential oils that would help with hypothyroidism, exhaustion, and crankiness (funny, they don't have one for the that!). I began to think about all of the other supplements, oils, and holistic medicines that could help my kids. I started down a rabbit trail of research for autism, and alternative medicines used for attention and focus. Fifteen minutes later, I was overwhelmed thinking about adding something else to our already full routine.
And this is when it struck me: I CANNOT HELP MY CHILDREN WHEN I AM DEPLETED!!!!
I CANNOT GIVE TO THEM THAT WHICH I DO NOT GIVE MYSELF!!!!
Isn't this our plight? We spend so much time thinking, loving on, and doing for our own fold when we have nothing to give. I must be willing to research things that will help ME, so that I can, in turn, give to those I love the most.
It's the old, "put the oxygen mask on yourself before you put it on your child" mentality. If we are sucking for air, we cannot possibly be any good for those around us.
As Brene Brown said recently, we all wear exhaustion like it's a badge. We can all one-up each other with stories of our heroism and valor of staying up all night to bake cookies, holding down 4 jobs, stirring dinner, and sewing Suzie's ballet costume, but we cannot tell you the last time we actually felt good.
My son's therapist told me recently that in all of his years of practicing, this is the most anxious group of children he has ever seen. They are all medicated because we expose them to adult-like pressures of having so many balls in the air, that they cannot manage.
IF I AM DEPLETED ALL OF THE TIME, HOW CAN I TEACH MY CHILDREN WHAT IT MEANS TO BE RESTFUL AND PRESENT???
If I am overextending and not paying attention to my own exhaustion, how can I teach them to listen to their bodies?
It's time to stop. It's time to rest.
I closed all the tabs of my computer, and opened one window to ask questions about my own disease on a forum. I got helpful responses, and now it is up to me to take the plunge and try a few things that may work.
I think it may be an uphill battle to introduce the 'Italian siesta' into our culture. We are pretty stuck in our ways as Americans. But, I can introduce that concept of balance and holistic living in my own corner of the world. It begins with me.
Saturday, March 1, 2014
New Normal
Life has changed quite a bit at our household these days. I have begun working.
I am currently in the beginning stages of my internship at school. I am seeing clients a few days per week in the counseling center of the college I attend. I have had the privilege of walking with college students in the throws of reality. It has been a blessing to see these brave students wrestle with who they are apart from their family of origin, and the fear that comes with not knowing who they will become. I remember that season of life very well, and really didn't figure out the answers to many of those questions until recently. Change that...I am still learning.
But, it has definitely changed the pace and routine of life around the house. I am not as emotionally capable as I was before. I am not as attentive and present as I have been in the past. Sometimes, my oldest has to come and push me when I am catatonic on the couch after a day of seeing clients in order for me to 'come to'. Okay, not exactly. But, there have been many conversations lately that go like this.
"HEY MOM!"
"Oh, hey, honey. I'm sorry. I'm a little out of it. How was your day?"
We are still trying to figure it all out. What is the balance? How do I self-care, yet be a mother?
As most therapists will tell you, we have a different type of exhaustion that sets in. No, I am not lifting a pile of bricks every day, or running around on the floor of the stock exchange, OR even saving lives in the back of an ambulance. I am sitting. In a chair. All day. In a room. Alone with one other person.
But, the thing we have to do that is not required of many other jobs is that we have to sit and be perfectly present with another one's story. My ONLY job is to hold a sacred space for the other to come and sit in their pain. And, I cannot waiver from this in that hour. I cannot "check out" and look at my phone or get up and walk around. I am looking straight into their eyes and tracking every single word they say. And I am trying to honor their life story in (hopefully) a way that is healing.
Now don't get me wrong, I do love this work!! I am, quite honestly, so honored that someone would allow me to come alongside their journey. It is remarkable to see people be so brave as to look at their pain dead in the eye!
But, when it comes to the end of the day, I am, many times, flat as a pancake. Our professors have been harping on something called 'compassion fatigue'. And, they are correct! As therapists, we must be balanced in getting enough sleep, good nutrition, breaks, self-care, emotional support, etc, before we can help other people.
And so begins the evenings with my guys...
They are having to get used to this new way of being. As their mother and only parent, they rely on me to meet their needs that are largely emotional at this stage in the game. (and physical, if you live with two boys, you understand the messes they leave behind!)
So, we have a lot of Trader Joe's frozen, heat-up-and-eat meals. Thank heavens for TJ's!!!!
As my sweet friend calls it, the "Working Mom's Grocery Store". I am really sorry for those of you reading this that do not have access to TJ's. God love them. They make wonderful prepared meals that ACTUALLY have somewhat natural ingredients, are priced reasonably, and taste delish!!!! And, if you have some "study" that says that TJ's actually has GMO produce or their freezer food is laced with carcinogens- please keep that information to yourself. Thanks.
So, many of you mama's reading this will say, "What else is new? I've been working since my baby was two days old!!"
And, you would be right to say that.
This is just new for us. I have been working different part-time jobs, music stuff, singing, and performing this whole time. But, the work has been sporadic, and I have had the blessing of being able to, for the most part, be at home when my kids got off the bus every day. I have not taken it for granted one second. Because, in this day in age, my story is the exception. Most families are two income families. And, it is unheard of that single mama's get to stay at home. I have scrapped and saved to make that work because I knew it was the best thing for MY family. Not anyone else's story. Only mine.
So, things are different. And change is always hard.
But, this is the part of the blog when I say, HOW DO YOU ALL DO IT???????
How do you single, working parents juggle it all????????
Seriously, how do we all make it work? I think that being a working parent has gotten so normalized in our society that it is often seen as WEIRD if you don't work. I remember my son asking me one time why I wasn't employed full time. I had to work really hard not to forcefully grab his collar, pin him up against the wall and say, "I DO WORK FULL TIME!!! LOOK AT THE FOLDED LAUNDRY, EXCEL SPREADSHEET BUDGET, AND FROZEN DINNER BEING HEATED UP ON THE STOVE!!"
No, no, I didn't do that. I slapped him across the face and demanded that he go get a job in the coal mine because he wasn't 'pulling his weight around here'.
Okay, okay, I didn't do that either. I simply said, "You'll understand one day."
I guess what I really want to say is, I want those of you who are doing this alone to stop and think about all you juggle. It wasn't supposed to be like this. No, I am not suggesting that women shouldn't work and should stay in the kitchen. NOT EVEN A LITTLE BIT. It's just that it wasn't supposed to be this hard and complicated. In a perfect world, we would all have energy to love our kids, love our work, and have fulfilling lives in between!
It is hard stuff. And, don't let the culture tell you it's just what we do. Stop and take care of yourself. Feel your feelings and let yourself cry over the pain of not feeling like you're enough. Because you are not, and you weren't supposed to be. Let go of the expectation of being together and perfect! We are all so hard on ourselves and harbor such self-hatred over the comparisons we make to other people.
Say it with me:
It is okay if my child plays on the iPad for an inordinate amount of time.
It is okay that we are eating something out of a box.
It is okay to say this is hard.
As my spiritual director, Gail, says almost every time I see her, "Be gentle with yourself."
Even though you are fighting a big battle, put your weapons down for a bit, and let this tired warrior catch a breath. For when you do this, you are giving yourself a little more to give with each breath.
This is very counter to our culture of "Go big or go home" in America.
We aren't built to do it all.
But, once you give yourself that nod of acceptance, a crazy thing happens. You find you do have a little gas in the tank left to give to someone else. You can play that silly game with your kids, or have a serious heart to heart about girls, or go throw a football.
And, when they have their own kids, they just might get it. Maybe.
One can only hope.
I am currently in the beginning stages of my internship at school. I am seeing clients a few days per week in the counseling center of the college I attend. I have had the privilege of walking with college students in the throws of reality. It has been a blessing to see these brave students wrestle with who they are apart from their family of origin, and the fear that comes with not knowing who they will become. I remember that season of life very well, and really didn't figure out the answers to many of those questions until recently. Change that...I am still learning.
 |
| This room is very similar to the room I meet clients in!! Very calming! |
But, it has definitely changed the pace and routine of life around the house. I am not as emotionally capable as I was before. I am not as attentive and present as I have been in the past. Sometimes, my oldest has to come and push me when I am catatonic on the couch after a day of seeing clients in order for me to 'come to'. Okay, not exactly. But, there have been many conversations lately that go like this.
"HEY MOM!"
"Oh, hey, honey. I'm sorry. I'm a little out of it. How was your day?"
We are still trying to figure it all out. What is the balance? How do I self-care, yet be a mother?
As most therapists will tell you, we have a different type of exhaustion that sets in. No, I am not lifting a pile of bricks every day, or running around on the floor of the stock exchange, OR even saving lives in the back of an ambulance. I am sitting. In a chair. All day. In a room. Alone with one other person.
But, the thing we have to do that is not required of many other jobs is that we have to sit and be perfectly present with another one's story. My ONLY job is to hold a sacred space for the other to come and sit in their pain. And, I cannot waiver from this in that hour. I cannot "check out" and look at my phone or get up and walk around. I am looking straight into their eyes and tracking every single word they say. And I am trying to honor their life story in (hopefully) a way that is healing.
Now don't get me wrong, I do love this work!! I am, quite honestly, so honored that someone would allow me to come alongside their journey. It is remarkable to see people be so brave as to look at their pain dead in the eye!
But, when it comes to the end of the day, I am, many times, flat as a pancake. Our professors have been harping on something called 'compassion fatigue'. And, they are correct! As therapists, we must be balanced in getting enough sleep, good nutrition, breaks, self-care, emotional support, etc, before we can help other people.
And so begins the evenings with my guys...
 |
| Bless the genius behind this place!! |
So, we have a lot of Trader Joe's frozen, heat-up-and-eat meals. Thank heavens for TJ's!!!!
As my sweet friend calls it, the "Working Mom's Grocery Store". I am really sorry for those of you reading this that do not have access to TJ's. God love them. They make wonderful prepared meals that ACTUALLY have somewhat natural ingredients, are priced reasonably, and taste delish!!!! And, if you have some "study" that says that TJ's actually has GMO produce or their freezer food is laced with carcinogens- please keep that information to yourself. Thanks.
So, many of you mama's reading this will say, "What else is new? I've been working since my baby was two days old!!"
And, you would be right to say that.
This is just new for us. I have been working different part-time jobs, music stuff, singing, and performing this whole time. But, the work has been sporadic, and I have had the blessing of being able to, for the most part, be at home when my kids got off the bus every day. I have not taken it for granted one second. Because, in this day in age, my story is the exception. Most families are two income families. And, it is unheard of that single mama's get to stay at home. I have scrapped and saved to make that work because I knew it was the best thing for MY family. Not anyone else's story. Only mine.
So, things are different. And change is always hard.
But, this is the part of the blog when I say, HOW DO YOU ALL DO IT???????
How do you single, working parents juggle it all????????
 |
| I realize this may be the scariest picture of all time! |
Seriously, how do we all make it work? I think that being a working parent has gotten so normalized in our society that it is often seen as WEIRD if you don't work. I remember my son asking me one time why I wasn't employed full time. I had to work really hard not to forcefully grab his collar, pin him up against the wall and say, "I DO WORK FULL TIME!!! LOOK AT THE FOLDED LAUNDRY, EXCEL SPREADSHEET BUDGET, AND FROZEN DINNER BEING HEATED UP ON THE STOVE!!"
No, no, I didn't do that. I slapped him across the face and demanded that he go get a job in the coal mine because he wasn't 'pulling his weight around here'.
Okay, okay, I didn't do that either. I simply said, "You'll understand one day."
I guess what I really want to say is, I want those of you who are doing this alone to stop and think about all you juggle. It wasn't supposed to be like this. No, I am not suggesting that women shouldn't work and should stay in the kitchen. NOT EVEN A LITTLE BIT. It's just that it wasn't supposed to be this hard and complicated. In a perfect world, we would all have energy to love our kids, love our work, and have fulfilling lives in between!
It is hard stuff. And, don't let the culture tell you it's just what we do. Stop and take care of yourself. Feel your feelings and let yourself cry over the pain of not feeling like you're enough. Because you are not, and you weren't supposed to be. Let go of the expectation of being together and perfect! We are all so hard on ourselves and harbor such self-hatred over the comparisons we make to other people.
Say it with me:
It is okay if my child plays on the iPad for an inordinate amount of time.
It is okay that we are eating something out of a box.
It is okay to say this is hard.
As my spiritual director, Gail, says almost every time I see her, "Be gentle with yourself."
Even though you are fighting a big battle, put your weapons down for a bit, and let this tired warrior catch a breath. For when you do this, you are giving yourself a little more to give with each breath.
This is very counter to our culture of "Go big or go home" in America.
We aren't built to do it all.
But, once you give yourself that nod of acceptance, a crazy thing happens. You find you do have a little gas in the tank left to give to someone else. You can play that silly game with your kids, or have a serious heart to heart about girls, or go throw a football.
And, when they have their own kids, they just might get it. Maybe.
One can only hope.
Friday, December 6, 2013
As "Iron (Bowl) Sharpens Iron"
***Many thanks to Kristen for reminding me why I do this blog! Thank you for writing and getting me back on the horse!!***
I have not fully accepted that winter is quickly making it's comeback. The weather is indeed frightful outside with a big ice storm on its way, so today is a perfect day to get under a blanket and write this blog. This southern girl does not do well in the cold.
Since the last blog, I am happy to report that Liam has settled in nicely to middle school. I have made great sacrifices to stay in the county where we live because the school system here is amazing! All of my support network and family lie one county over, so it can be difficult when the stuff of life happens. But, it has been well worth it when I come to an IEP meeting and his teachers give me good reports and seem truly invested in his learning. He is independently walking to each class and has minimal support in the inclusion classrooms. He is only pulled out a few times during the day for individualized teaching- which is HUGE! We are putting him in different arenas of extracurricular activities to see which one "sticks". I can report that while being the water boy for the middle school football team over the summer and early fall was an honor, I think he likes knowing the stats of the game rather than the manual labor required to actually fill the bottles up and take them to the players.
 |
| The Water Boy! |
To my horror, players and coaches were many times desperately yelling for water while Liam was too busy staring into space and adding up the yardage gain in his head from the previous play. I had to stop going to the games because I would get more stressed out about his lack luster performance than he would!
I don't believe I have fully explained Liam's obsession with football on this blog. He just so happens to be one of the biggest University of Alabama's fans. And, unless you are just completely unaware of anything sports related, Bama has been consistently on top for the past 5 years. And, unless you live under a rock- there was a small (really tiny) game played this past Saturday that rocked Bama's hopes for a 3rd National Championship in 4 years under the reign of head coach, Sir Nick Saban, or "Lord Saban" as he is referred to in our house. And, this game may have been our fiercest rival ever. And, the last play of the game before inevitable overtime, may just have been played and replayed countless times on every single network on every single channel in the entire nation. Our beloved team lost. Our championship dreams dashed by a "miracle" play that some are calling the greatest end to a football game in history.
 |
| Lord Saban with his team! |
We were in shock.
To work so hard to get to this point in the season-only to lose in one moment was gut-wrenching! I act like it was me on the field playing the game, but this is SEC football! We live and die football down here.
As my mind stared blankly at the screen, my family members all muttering sighs of disbelief, a familiar sound came from the bedroom next to us. Liam had wisely given himself time-outs through out the game if the score was too close for comfort. He would emerge from the bedroom, check the status, and quickly go back in and close the door if he knew his blood pressure couldn't handle it! But, the sound I heard was one of angry screams of rage, things being thrown, and walls being punched!
I had been preparing for this day all along. It's pretty remarkable that Alabama has won as many games as they have. They have been the team to beat for several years and there was talk of a dynasty occurring. So, in the mind of a child with autism, winning becomes a routine. And, I know I have talked on this blog about the futile nature of trying to explain winning and losing to him.
Then, to make matters worse, another family member raged at the fact that Liam was raging...
We were all grieving, and none of us knew what to do but to go to our default modes of coping.
When I finally made it in to Liam's room without having things thrown at me, he was lying down, breathing deeply, hands close to his face, and eyes closed. I scratched his back and we both sat in silence for a while.
When enough time had passed, he looked at me wide-eyed and said, "Mom, MY 'play of the game' was the 99 yard pass that AJ McCarron threw!"
AJ McCarron is Alabama's QB that threw an incredible 99 yard pass for a touchdown in the
 |
| Few QB's have as many Championship rings as losses! |
same game that Auburn won. It was indeed a great play and probably would have moved AJ's chances of winning a Heisman- if Bama had won the game.
But, it was not the pass that stood out to me. It was Liam's ability to bring it back around to a memorable moment of joy in the game. To me, this was a giant leap for mankind!!! (okay, maybe just our family)
Liam was able to recall a good moment and let that be his comfort. He could have easily dwelt on the loss for days and days on end. But, instead, he focused on the positive- something that he has never been able to do very well (if ever) up until this point. And, something that is very difficult for him given his unwavering obsession with all things Alabama sports.
The Auburn-Alabama game is called the Iron Bowl every year for historical, and some more obvious, reasons. With Iron-Bowl-like strength, Liam managed to kick the walls, throw a few items, and tear things up. But, miraculously, he used that same strength to dig deep and find a ray of light in the midst of heartache.
The lesson here is that things are moving...things are changing...he is progressing...and the struggles we have dealt with for so long are finally moving more and more in to the past. And in the meantime, he teaches ME the stuff of life. He is teaching me to focus on what went right instead of what went wrong.
Proverbs 27:17 "As iron sharpens iron, so one person sharpens another."
He continues to "sharpen" me every day! I love this, and I love that little guy!
Oh...and Roll Tide Roll!!
Wednesday, August 7, 2013
The Dreaded Transition
I very much apologize for such a long hiatus from this blog! Summer time has, unfortunately, not given me long periods of down time. In addition to being the only parent, I am currently in school right now finishing a master's degree in Marriage and Family Therapy. I figure since I have been through, what feels like, about four lifetimes, maybe I can help someone else. I have another year and a half before I walk down the aisle with cap and gown. All told it will be about 3 1/2 years of extra schooling. So, you can imagine my disdain when I see claims of getting a "few weekends course" on becoming a therapist! There is a method to the madness, and I look forward to the day I can hang a shingle and begin seeing clients.
I may even see myself helping families with a new autism diagnosis. Those first couple of years after the initial "drop" into autism is a daunting one at best. You are, on the one hand, relieved that there is a name for all of the craziness that you have felt, and on the other hand, you are completely overwhelmed and thrown into an unknown world of doctor and therapy appointments, school meetings, diet changes, medications, THE WORKS!
A dear friend from childhood just sent me a message through Facebook to tell me that she believed that her son was on the spectrum. She gave me the list of 'symptoms' and all I could do was shake my head and say to myself, "yes, I believe she is right." My stomach dropped as I read her plea. I remember those first years and how freaking hard everything was. Nothing made sense. I was exhausted and depleted at every turn. Mind you, I am still tired, but life has a different pace to it. My hyper-vigilance is not quite what it used to be. But, I have a real empathy for those just now finding out.
This same friend asked me to write about transitions. Aren't these the hardest?? I can't say that transitions are not still the number one thing that sends Liam through the roof.
Here are a few tips I have learned (the hard way):
1. Keep a schedule
This may come very natural to some of you. I, however, prefer to float aimlessly through my day. I love to see what adventures may arise out of the blue. I love to slowly waltz from one activity to the next. This. Does. Not. Work. With. Autism. I repeat, you may not be a creative-type without a plan. Free-form does not exist in the world of autism. I have learned that there is at least 85% less whining and freak outs when there is a visual schedule. What is a visual schedule, you might say? (Oooohhhhoooohhhhhooooo, your world is about to change!!!!)
7. Share your journey with others
Unfortunately, most people will not get it. But, it won't hurt to try. You cannot shoulder this alone. You need friends, family, therapists, pastors, and anyone else who can be there for you in a significant way to help. Do not be afraid to ask for help. There will come a day when you won't need as much. There is an end in sight. But, until that day, you have to invest in relationships that give back.
And, once you have done all seven of these steps, you will go to bed. Sleep as much as you can, and do it all over again the next day.
Power on! You are stronger than you think.
I may even see myself helping families with a new autism diagnosis. Those first couple of years after the initial "drop" into autism is a daunting one at best. You are, on the one hand, relieved that there is a name for all of the craziness that you have felt, and on the other hand, you are completely overwhelmed and thrown into an unknown world of doctor and therapy appointments, school meetings, diet changes, medications, THE WORKS!
A dear friend from childhood just sent me a message through Facebook to tell me that she believed that her son was on the spectrum. She gave me the list of 'symptoms' and all I could do was shake my head and say to myself, "yes, I believe she is right." My stomach dropped as I read her plea. I remember those first years and how freaking hard everything was. Nothing made sense. I was exhausted and depleted at every turn. Mind you, I am still tired, but life has a different pace to it. My hyper-vigilance is not quite what it used to be. But, I have a real empathy for those just now finding out.
This same friend asked me to write about transitions. Aren't these the hardest?? I can't say that transitions are not still the number one thing that sends Liam through the roof.
Here are a few tips I have learned (the hard way):
1. Keep a schedule
This may come very natural to some of you. I, however, prefer to float aimlessly through my day. I love to see what adventures may arise out of the blue. I love to slowly waltz from one activity to the next. This. Does. Not. Work. With. Autism. I repeat, you may not be a creative-type without a plan. Free-form does not exist in the world of autism. I have learned that there is at least 85% less whining and freak outs when there is a visual schedule. What is a visual schedule, you might say? (Oooohhhhoooohhhhhooooo, your world is about to change!!!!)
 |
| PECS stands for Pictorial Exchange Communications System (now you're smart!) |
When Liam's therapists began giving me all of these pictures of things that he liked or things that he did during the day, I just sort of stared at these them like, "um, yea, how is this supposed to help me not kill my child?" They just looked at me and winked, and seemed to say, "just give it time, you'll be using these like crack- and, oh, we know what we're doing and you don't." Turns out, they were right. Even a toddler at 2 years of age can see what the pictures represent. For whatever reason, this satisfies the autistic child's need for order and predictability. And, now that Liam is older, I can just write out his schedule without using the pictures. I even schedule his down time (shoot me!) like:
1. Eat breakfast
2. Watch tv
3. Play basketball
4. Snack
5. Computer time
6. Massage mommy's shoulders
Do not do what I did which was to ignore the PECS for several years. Go ahead and start using it today!!
2. The Great "If-Then" strategy:
Let's just get this right out of the way. You will be doing an inordinate amount of bribing with your newly diagnosed child with autism. You will say, in the beginning, that you will not partake of such parenting shenanigans, but, alas, my friends, you will. The "If-Then" board gives you a nicer name for your shenanigans than that nasty "B" word.
This is self explanatory, but you simply have a laminated sheet of paper that has an IF column and a THEN column. I used to have this paper with pieces of velcro so that I could put the visual symbol I wanted to under each one. (I can't seem to find a good example of one online)
For example:
IF: THEN:
CLEAN TOYS EAT COOKIES
When you are yelling maniacally at your child trying to reason with them as to why they should obey you, they do not get what you are saying. Stop talking, and start pointing at the chart. Remember the KISS method which is "Keep It Simple, Stupid". Anything more than the 'IF, THEN' turns to white noise!
3. Give them a LONG RUNWAY:
Much like an airplane that needs a really long runway to take off, a child with an airbus size tantrum ability needs a long runway to prepare for these transitions. You cannot expect a child sitting with the iPad on the couch to gently move to the carseat in 5 seconds time. You could with your other child. You CANNOT with this one!! When you foresee a transition coming up, you need to begin the countdown at LEAST ten minutes ahead of time, if not more. I even would do transitions for the end of a favorite book! (Okay, we are two pages away from being finished, then bed time...don't hit me.)
4. Try to do all of this without emotion
Now, I realize that even while I am typing this, I am clenching my jaws and yelling at my children to go to bed. There is hardly a good way to not show your annoyance when your child is screaming bloody murder and hurling themselves on the floor. But, I can attest that much of my son's tantrums and antics were to push my buttons. Yes, he has sensory and transition issues, but there is nothing quite as good as getting your mama's goat! Also, these guys need to be given credit where credit is due. They know that screaming gets the job done!! Everyone hops to it when Johnny Junior is having a meltdown. So, the key is to remain calm, grab your "IF-THEN" board and continue to point to the board until they respond appropriately. It may take you 20 times in a row. It may take you twice. But, once you have remained the calm one, you are actually modeling for them what normal behavior is. When you are not responding with chaos and emotion, the fun gets taken out of all the bad behaviors.
5. Pray
6. Drink a glass of wine. (or three)
7. Share your journey with others
Unfortunately, most people will not get it. But, it won't hurt to try. You cannot shoulder this alone. You need friends, family, therapists, pastors, and anyone else who can be there for you in a significant way to help. Do not be afraid to ask for help. There will come a day when you won't need as much. There is an end in sight. But, until that day, you have to invest in relationships that give back.
And, once you have done all seven of these steps, you will go to bed. Sleep as much as you can, and do it all over again the next day.
Power on! You are stronger than you think.
Thursday, April 25, 2013
Wheel of Fortune
Eek! I just realized it's been a month since I last posted. Life has been busy in my household. I am not complaining though! I have been able to go out of town on not one, but two fun trips in the month of April.
One of those trips was to Las Vegas. What a treasure trove of sensory overload that place is!! I thought of Liam several times as I went to the larger than life, four-story M&M's super store, saw the statue of Liberty made entirely of Jelly Belly's, and played the Wheel of Fortune slot machine. It truly is the Disney World for adults. I imagined what it would be like for him to walk in to a casino. I then imagined his head exploding.
I brought home pictures of Vegas for him to see. I even posted a video of me hitting the button on the Wheel of Fortune slot machine. He was riveted!
"When can I go, Mom?"
My mind traced back to the Pussycat Dolls dancing (if that's what you call it) in the middle of Caesar's Palace.
"Probably not for a REALLY long time, Liam."
You also have to have ALOT of money to make Vegas work for you. And, with my son's OCD capabilities, I will probably need to steer him clear of Vegas for a while.
Even as a well-informed, somewhat level-headed adult, I can see how gambling addictions happen. The "I'll-just-do-this-one-more-time" logic kicks in really fast. You see the breakdown happen when you notice someone two slot machines down from you win $100. You automatically assume that your big break is ONE pull away. You imagine what you will do with your winnings, the places you will go, maybe get that luxury SUV you've always wanted. Who cares? It's free money!! They're just GIVING AWAY MONEY AT THE CASINO.
And then you wake up. You realize you've been pressing the same button 20o times and you have like 3 pulls left and $0.75 credit. You IMMEDIATELY cash out. I mean, you know when to stop!
As my mama said, "Rebecca, the house always wins!"
I did enjoy myself though. I was with a group of fun girls who make me laugh harder than anything. We saw two great Vegas-y shows- Shania Twain and David Copperfield, ate amazing food, and were awestruck at the beauty and architecture of the hotels. (I mean, hello Bellagio!!!)
My favorite slot was by far the Wheel of Fortune machine. That machine ignited all of my pleasure centers in the brain at once because of the sounds that are JUST like the TV show, and the bonus spins they would throw your way at just the perfect time. (most likely when you were just about to cash out)
I have a deep affection for Wheel of Fortune. I grew up as a child of the 80's watching Vanna spin that wheel night after night. I have a dream of going on that show. I even went to a cattle call in Tennessee they held in order to be a contestant on Wheel of Fortune. As fortune (or misfortune) would have it, I did NOT get my name drawn that day. So, I now sit along with everyone else and solve many of the puzzles before the contestants get to them.
I have passed this love for Wheel of Fortune down to my son with autism. It is the perfect 'Aspy' (that's short for Asperger's) game with a spinning wheel, puzzles, and the same routine every show. Liam does get frustrated when I solve the puzzles before him, but he likes watching it with me all the same. Pat Sajak and Vanna White were at the top of his celebrity list for quite some time. He would wake up and announce when it was their birthdays. To this day, he knows exactly how old Vanna is. (I'm sure she has tried to keep that info off of the internet, but even so, Liam will NEVER forget!!!)
So, when February 18th rolls around...guess who is up at the crack of dawn eager to announce Vanna's birthday!!!!
For some time, Liam would obsessively search for Youtube videos of Wheel of Fortune's past. Such as, do you remember the show from October 1993? Well, Liam does because has seen it 50 times. And, he can tell you the puzzles that were solved on that show.
He also figured out quickly that if he had his hand on the master rewind/fast forward button that he could fast forward to the end to see what the puzzle was, and then rewind again and "solve" it before the contestants. Liam has no problem using a little trickery if it means in the end he is the winner. Too bad life does not come with fast forward and rewind. We are still working on that little concept.
And, sometimes I think how could I make this incredible brain of his work to my advantage?? How can I use that seemingly endless memory of his? There's got to be a way! There's got to be a cash cow in there somewhere!!!!
Hmmm...
Maybe that Vegas trip is not too far off after all!!
One of those trips was to Las Vegas. What a treasure trove of sensory overload that place is!! I thought of Liam several times as I went to the larger than life, four-story M&M's super store, saw the statue of Liberty made entirely of Jelly Belly's, and played the Wheel of Fortune slot machine. It truly is the Disney World for adults. I imagined what it would be like for him to walk in to a casino. I then imagined his head exploding.
 |
| JELLY BELLY GET IN MY BELLY!! |
I brought home pictures of Vegas for him to see. I even posted a video of me hitting the button on the Wheel of Fortune slot machine. He was riveted!
"When can I go, Mom?"
My mind traced back to the Pussycat Dolls dancing (if that's what you call it) in the middle of Caesar's Palace.
"Probably not for a REALLY long time, Liam."
You also have to have ALOT of money to make Vegas work for you. And, with my son's OCD capabilities, I will probably need to steer him clear of Vegas for a while.
Even as a well-informed, somewhat level-headed adult, I can see how gambling addictions happen. The "I'll-just-do-this-one-more-time" logic kicks in really fast. You see the breakdown happen when you notice someone two slot machines down from you win $100. You automatically assume that your big break is ONE pull away. You imagine what you will do with your winnings, the places you will go, maybe get that luxury SUV you've always wanted. Who cares? It's free money!! They're just GIVING AWAY MONEY AT THE CASINO.
 |
| All of these flowers are real. Pictures do not do the Bellagio justice! |
And then you wake up. You realize you've been pressing the same button 20o times and you have like 3 pulls left and $0.75 credit. You IMMEDIATELY cash out. I mean, you know when to stop!
As my mama said, "Rebecca, the house always wins!"
I did enjoy myself though. I was with a group of fun girls who make me laugh harder than anything. We saw two great Vegas-y shows- Shania Twain and David Copperfield, ate amazing food, and were awestruck at the beauty and architecture of the hotels. (I mean, hello Bellagio!!!)
My favorite slot was by far the Wheel of Fortune machine. That machine ignited all of my pleasure centers in the brain at once because of the sounds that are JUST like the TV show, and the bonus spins they would throw your way at just the perfect time. (most likely when you were just about to cash out)
I have a deep affection for Wheel of Fortune. I grew up as a child of the 80's watching Vanna spin that wheel night after night. I have a dream of going on that show. I even went to a cattle call in Tennessee they held in order to be a contestant on Wheel of Fortune. As fortune (or misfortune) would have it, I did NOT get my name drawn that day. So, I now sit along with everyone else and solve many of the puzzles before the contestants get to them.
I have passed this love for Wheel of Fortune down to my son with autism. It is the perfect 'Aspy' (that's short for Asperger's) game with a spinning wheel, puzzles, and the same routine every show. Liam does get frustrated when I solve the puzzles before him, but he likes watching it with me all the same. Pat Sajak and Vanna White were at the top of his celebrity list for quite some time. He would wake up and announce when it was their birthdays. To this day, he knows exactly how old Vanna is. (I'm sure she has tried to keep that info off of the internet, but even so, Liam will NEVER forget!!!)
So, when February 18th rolls around...guess who is up at the crack of dawn eager to announce Vanna's birthday!!!!
For some time, Liam would obsessively search for Youtube videos of Wheel of Fortune's past. Such as, do you remember the show from October 1993? Well, Liam does because has seen it 50 times. And, he can tell you the puzzles that were solved on that show.
 |
| This machine was not a winner. :( |
He also figured out quickly that if he had his hand on the master rewind/fast forward button that he could fast forward to the end to see what the puzzle was, and then rewind again and "solve" it before the contestants. Liam has no problem using a little trickery if it means in the end he is the winner. Too bad life does not come with fast forward and rewind. We are still working on that little concept.
And, sometimes I think how could I make this incredible brain of his work to my advantage?? How can I use that seemingly endless memory of his? There's got to be a way! There's got to be a cash cow in there somewhere!!!!
Hmmm...
Maybe that Vegas trip is not too far off after all!!
Tuesday, March 26, 2013
Spring Break(down)
Yes, who in their right mind came up with the term Spring Break? Break for who????
Any kind of break from the routine is no such break in the houses of autistic families. It is a week of long days, filling up our little one's time with activities and schedules. By the time the week ends, parents are bleary-eyed and exhausted counting down the seconds until Monday morning school begins.
Because of this, I decided I would share some of my favorite things in the autism world. This list is by far NOT exhaustive (because I am!), but it is a good start and may give you something to do during this week without STRUCTURE!!!!
1. Adam- This is an incredible story about an adult with Asperger's Syndrome. This is the movie that I tell people to watch when they ask me what autism is like on a day to day basis, and what autism may look like in adulthood. It is a touching story, but also incredible acting! Go see it.
2. Parenthood. I've talked about it before, but it bears repeating...THIS SHOW IS AMAZING! The writing is so great and true to life. Sometimes I will talk to my friends who watch this show like the characters are real- as if they are who I was with last Tuesday night. Then, I have to stop myself and say, "oh yea, they're not real."Adam and Christina are a couple (on the show, Rebecca) with a child on the autism spectrum. His name is Max, and although he can grate on your nerves with his whining and complaining, or the way he calls the shots in his family routine, you cannot help but feel empathy for the whole family. Again, if you are a family with a child on the spectrum, it will give you a good laugh and a good cry. If you are not an autistic family, it will enlighten you to the real life struggles that having a child who demands so much, and gives back so little, has on the people closest to them. They are, I believe, four seasons in, but it is worth sitting in your bed with Netflix and starting from the beginning. You won't regret it!!
Any kind of break from the routine is no such break in the houses of autistic families. It is a week of long days, filling up our little one's time with activities and schedules. By the time the week ends, parents are bleary-eyed and exhausted counting down the seconds until Monday morning school begins.
Because of this, I decided I would share some of my favorite things in the autism world. This list is by far NOT exhaustive (because I am!), but it is a good start and may give you something to do during this week without STRUCTURE!!!!
1. Adam- This is an incredible story about an adult with Asperger's Syndrome. This is the movie that I tell people to watch when they ask me what autism is like on a day to day basis, and what autism may look like in adulthood. It is a touching story, but also incredible acting! Go see it.2. Parenthood. I've talked about it before, but it bears repeating...THIS SHOW IS AMAZING! The writing is so great and true to life. Sometimes I will talk to my friends who watch this show like the characters are real- as if they are who I was with last Tuesday night. Then, I have to stop myself and say, "oh yea, they're not real."Adam and Christina are a couple (on the show, Rebecca) with a child on the autism spectrum. His name is Max, and although he can grate on your nerves with his whining and complaining, or the way he calls the shots in his family routine, you cannot help but feel empathy for the whole family. Again, if you are a family with a child on the spectrum, it will give you a good laugh and a good cry. If you are not an autistic family, it will enlighten you to the real life struggles that having a child who demands so much, and gives back so little, has on the people closest to them. They are, I believe, four seasons in, but it is worth sitting in your bed with Netflix and starting from the beginning. You won't regret it!!
3. Jasongood.net
A friend of mine recently sent this to me and I howled with laughter!! Jason is a comedian, husband, and father. I love anyone that can make the ordinary funny and can throw in humor about the woes of parenting. Because as I often say, if you're not laughing, you're probably crying! Jason recently posted this little gem referring to his 3 year old. I have no idea if his son is on the spectrum, but it sounded so much like my little guy that I decided to copy and paste his post.
46 Reasons My Three Year Old Might Be Freaking Out
Some of these are total guesses. Educated guesses, but guesses nonetheless. Seems like it’s hard being a kid.
His sock is on wrong.
His lip tastes salty.
His shirt has a tag on it.
The car seat is weird.
He’s hungry, but can’t remember the word “hungry.”
Someone touched his knee.
He’s not allowed in the oven.
I picked out the wrong pants.
His brother looked at him.
His brother didn’t look at him.
His hair is heavy.
We don’t understand what he said.
He doesn’t want to get out of the car.
He wants to get out of the car by himself.
The iPad has a password.
His sleeve is touching his thumb.
He doesn’t understand how popsicles are made.
The inside of his nose stinks.
Chicken is gross.
A balloon he got six months ago is missing.
A puzzle piece won’t fit in upside down.
I gave him the wrong blue crayon.
The gummi vitamin is too firm.
Netflix is slow.
He jumped off the sofa and we weren’t watching.
He’s not allowed to touch fire.
Everything is wrong with his coat.
There’s a dog within a 70 mile radius.
A shoe should fit either foot.
I asked him a question.
His brother is talking.
He can’t lift a pumpkin.
He can’t have my keys.
The cat is in his way.
The cat won’t let him touch its eyeball.
The inside of his cheek feels rough.
Things take too long to cook.
He has too much food in his mouth.
He sneezed.
He doesn’t know how to type.
The DustBuster is going to eat him.
His mom is taking a shower.
Someone knocked over his tower.
He got powdered sugar on his pants.
The yogurt won’t stay on his spoon.
EVERYTHING IS TOO HOT.
**********************************************
Another post from Jason talks about his wife's habit of trying not to use expletives in front of her children. If you've ever stepped on an action hero with bare feet, and have almost blown an O-ring from trying to keep from saying a bad word, then this is the link for you: http://jasongood.net/365/2013/01/the-g-rated-phraseology-of-motherhood/
4. Jim Gaffigan So, speaking of comedy, I don't know anyone who does not love the comedy of Jim Gaffigan. I hear he has a new special out on DVD, but the most recent one I have seen is Mr. Universe. He is a father of 5 kids, and has lots of material with that fact alone. Netflix has it, so no excuses! Go check it out!!
5. Savant "Burgertime" So, my oldest son is WAY in to DJ's, dub step, and electronic dance music. It is an entire other world of pulsating beats, light shows, and headaches. (because after several minutes of listening to it, you will get a headache!) But, every once in a while, he will play me something that I can hang with. I like some of the more pop stuff. And, there is a chap with autism who started making dub step music several years ago. His DJ name is aptly called Savant. My son informed me that last year alone he produced four albums, so he is definitely living up to his name. I wanted to share his song "Burgertime" because I like the fact that he refers to his diagnosis in the song, and I think it's incredibly brave for him, and informative for us.
I will end my list of favorite things, for now.
I hope this week proves to be a time when you actually CAN listen to a song on Youtube, watch an entire movie, or maybe even an entire season of a TV show.
Sometimes you just gotta just unplug.
Subscribe to:
Posts (Atom)