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.
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, April 28, 2015
First Chair
In the hustle and bustle of life, we forget to feel. Well, it's not exactly like that. We just forget that we have all of these emotions pulsing through our veins at any given point.
Yes, that's right. Those things you thought you were pushing down into your belly don't exactly go anywhere. They tend to just float right back up to the surface. Those pesky little things that were created to tell us the temperature of our emotional selves continue to bounce all around us. And, as my mentor said, "If you try to get over 'em, you end up under 'em."
And, alas, the more work I do on myself (by way of counseling others and my own therapy), the more I find this statement to be true.
I found myself out and about a few nights ago, celebrating my best friend's birthday. We had amazing wine, great food, and hilarious banter! It was a fancy restaurant and I was dressed up both inside and out. I had my "outfit" on and I had my witty Self on that night as well.
On the car ride home, I was ecstatic to get to see Liam and tell him how proud I was of him. He had made first chair that day in percussion. First chair is as big a deal as any in our household. This is because the phrase starts with the word "FIRST", and as I have commented on many a blog, this is the word that sends my little guy through the roof!! He both loves and disdains competition. It excites him and freaks him out at the same time. He wants to be first every week, but there's always someone a little bit better than him...until this week.
The idea of chairs in percussion is you must play a scale on marimba the fastest without missing any notes and playing it in time. It occurred to Liam's friend, Zach, (see the blog "Sleepovers") that all of the other players had played the piece at 135 bpm, so Liam should bump it up to 140! Liam reluctantly decided to follow his advice and speed through his scale at 140.
He was so nervous after he played, he ran to the practice room and turned off the lights, waiting to see what the results were!! The pressure was just too much!
The list was typed up and printed off...the band teacher slowly walked over to the wall and slapped the results up so everyone could see who got what.
And there it was...Liam, after almost 7 1/2 months of school, was first chair.
So, you can imagine my excitement for him! I couldn't wait to hear the play by play and get a high five. I couldn't wait to bask in the moment with him and see his face light up when he told me about it.
Yes, that's right. Those things you thought you were pushing down into your belly don't exactly go anywhere. They tend to just float right back up to the surface. Those pesky little things that were created to tell us the temperature of our emotional selves continue to bounce all around us. And, as my mentor said, "If you try to get over 'em, you end up under 'em."
And, alas, the more work I do on myself (by way of counseling others and my own therapy), the more I find this statement to be true.
I found myself out and about a few nights ago, celebrating my best friend's birthday. We had amazing wine, great food, and hilarious banter! It was a fancy restaurant and I was dressed up both inside and out. I had my "outfit" on and I had my witty Self on that night as well.
On the car ride home, I was ecstatic to get to see Liam and tell him how proud I was of him. He had made first chair that day in percussion. First chair is as big a deal as any in our household. This is because the phrase starts with the word "FIRST", and as I have commented on many a blog, this is the word that sends my little guy through the roof!! He both loves and disdains competition. It excites him and freaks him out at the same time. He wants to be first every week, but there's always someone a little bit better than him...until this week.
The idea of chairs in percussion is you must play a scale on marimba the fastest without missing any notes and playing it in time. It occurred to Liam's friend, Zach, (see the blog "Sleepovers") that all of the other players had played the piece at 135 bpm, so Liam should bump it up to 140! Liam reluctantly decided to follow his advice and speed through his scale at 140.
He was so nervous after he played, he ran to the practice room and turned off the lights, waiting to see what the results were!! The pressure was just too much!
The list was typed up and printed off...the band teacher slowly walked over to the wall and slapped the results up so everyone could see who got what.
And there it was...Liam, after almost 7 1/2 months of school, was first chair.
 |
| The coveted FIRST CHAIR-I picture a throne in my head. |
Admittedly, I did get home a bit late, but I knew he would not be fully asleep. So, I tiptoed up to his room to have our big moment.
"Liam," I whispered, "I am so very proud of you getting FIRST CHAIR today!" **enthusiastic, but still tempered whisper**
Instead of rolling over to give me the high five my heart clearly wanted, he shot up so quickly in his bed, that he smacked his head into my forehead. It was most definitely going to leave a mark- on both of us.
"MOM, WHAT ARE YOU DOING- GET OOOOUUUUUTTTT!!!!" **enthusiastic teen rage in loudly audible voice**
"FINE!!!! I WAS JUST GOING TO SAY HOW PROUD OF YOU I WAS, BUT NOW I'M NOT! GOD, YOU RUIN EVERYTHING!!!" **enthusiastic teen rage coming out in a mommy's body**
Yep. Not my proudest moment. I was hurt- both physically and emotionally. I was angry. And I was lonely.
In my counseling office, I am teaching my clients to use feeling words instead of the all-too-popular responses like, "meh!", "frustrated", "stressed", etc. These words do not hit the heart the way that anger, sadness, shame, and lonely do. They just don't. So often we use these words to hide the very things that we NEED to be feeling. So, the very things that I am teaching my clients have to be put in to practice in my own life. (oy veh!!)
It's much easier to say that the traffic was mildly irritating, but my actions spoke much more like rage when I honked and cussed in my vehicle. Or, when I try to shrug off something important in my life and call it a "blah" day, I'm more likely extremely sad. I'm in grief.
My response to Liam was anger, but it came from a deeper place of hurt and longing for relationship with him. When I am honest with my feelings, it puts me in touch with my soul. It allows me to know ...well, ME! I can then begin to know the deepest places in my heart that need healing, that need restoration. If I am constantly using other words to describe myself, I am leaving myself on the operating table of life-bleeding and, sometimes, without a pulse.
When anger creeps in (as it does a lot of the time), I can begin to see the roots of other emotions that are trying to drive the bus of my heart. When I own up to it (what is actually going on inside of me), my heart/soul/Self then drives the bus. Then, it is I who sits in the "first chair" of my own heart. And I can begin to help my emotions sit in the passenger seat, continuing to give me clues to who I was made to be.
There will always be a tinge of loneliness, hurt, and anger as I live with a child who has very little capacity to see me. But, on those rare occasions when he does see me, I will relish it! I will know beyond a shadow of a doubt because there are no mixed words in autism.
There is only truth.
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.
Thursday, August 14, 2014
Wild At Heart
This week has been especially hard.
The news of Robin Williams showed up on my phone just as I was leaving a meeting with a friend. It felt like a punch in the gut, as I'm sure it hit most everyone the same way. How could this man, so full of life, leave just like that? How could he not know how much we all loved him? How could he not know the blessing that he was to our lives?
Over the next day, I watched as tributes and dedications poured in to the news networks and twitter-spheres. Celebrities, stunned, shook their heads and openly weeped for a man so full of heart and passion. From all accounts, he was everyone's favorite guest on the talk shows, as they never knew where the interview would go. Robin was wild and unpredictable, yet warm and inviting. Wherever he was, people forgot about their problems. He made people belly laugh until they cried. Robin Williams took them to another place.
When the final report on how Robin Williams died came in, my heart broke. I began to sob and I knew that this was touching my own story in more ways than one. It was, once again, time for me to grieve my own loss.
I lost my first true love to suicide.
Will and I were married when I was very young. We had our two boys, one of whom this blog refers to all the time- Will's namesake, Liam. Our marriage lasted for almost ten years before, sadly, ending in divorce.
Will was not unlike Robin Williams. He was passionate, larger-than-life, hilarious, warm, caring, crazy, silly, talented. His highs were wild and it was all I could do to keep up. But, his lows were low and there was a tragic theme of self sabotage and destruction always lurking around the corner. He could flip on a dime-keeping all of those around him guessing as to which person they would get.
His talent was undeniable- an artist's artist. Musicians still talk about his record, his guitar playing, and the way that his music made them feel. He made you love music. I mean, really love music. He would make you sit down in a chair and listen to whatever it was he was working on. You would grin ear to ear because he would "air" play every single part of the song as if he had a thousand people in front of him. He would so lose himself in the moment that he didn't care how he looked. He wanted to convey THE SONG. That was all that mattered in that moment.
He could tell the best stories. His imitations of people were so spot on that you would be crying with laughter on the floor. He was so animated while he was talking that you couldn't help be enamored with whatever story he was telling!
My sisters and I would laugh at him because anytime he would come in to the house it was like a windblown whirlwind. He was like Kramer on Seinfeld! He couldn't just walk quietly in the house- he and his presence would come in and overtake the room.
And then, one day, just like that. He was gone. He took his own life. And, even as I type this, I still cannot believe it. How can someone so full of vitality be gone?
Yes, there were the signs- depression, anxiety, but I never pictured life and the world without Will in it. It just wasn't an option in my mind. He was too big-it would never be something he chose. Never.
But...it did. And in one act, his seemingly endless light was extinguished. Such a profoundly dark ending to a life so full of light.
It is no wonder that I have been deeply affected by the events of this week. The accounts of Robin are so similar to Will's. But, I hope that writing about it will move me towards the necessary pain of grief and loss. As a mentor once said, if you try to get over pain, you end up underneath it.
And so the onion gets pulled back another layer. Another step towards the pain of grief.
I miss you, Robin.
I miss you, Will.
The world will never be the same without you.
The news of Robin Williams showed up on my phone just as I was leaving a meeting with a friend. It felt like a punch in the gut, as I'm sure it hit most everyone the same way. How could this man, so full of life, leave just like that? How could he not know how much we all loved him? How could he not know the blessing that he was to our lives?
Over the next day, I watched as tributes and dedications poured in to the news networks and twitter-spheres. Celebrities, stunned, shook their heads and openly weeped for a man so full of heart and passion. From all accounts, he was everyone's favorite guest on the talk shows, as they never knew where the interview would go. Robin was wild and unpredictable, yet warm and inviting. Wherever he was, people forgot about their problems. He made people belly laugh until they cried. Robin Williams took them to another place.When the final report on how Robin Williams died came in, my heart broke. I began to sob and I knew that this was touching my own story in more ways than one. It was, once again, time for me to grieve my own loss.
I lost my first true love to suicide.
Will and I were married when I was very young. We had our two boys, one of whom this blog refers to all the time- Will's namesake, Liam. Our marriage lasted for almost ten years before, sadly, ending in divorce.
Will was not unlike Robin Williams. He was passionate, larger-than-life, hilarious, warm, caring, crazy, silly, talented. His highs were wild and it was all I could do to keep up. But, his lows were low and there was a tragic theme of self sabotage and destruction always lurking around the corner. He could flip on a dime-keeping all of those around him guessing as to which person they would get.
His talent was undeniable- an artist's artist. Musicians still talk about his record, his guitar playing, and the way that his music made them feel. He made you love music. I mean, really love music. He would make you sit down in a chair and listen to whatever it was he was working on. You would grin ear to ear because he would "air" play every single part of the song as if he had a thousand people in front of him. He would so lose himself in the moment that he didn't care how he looked. He wanted to convey THE SONG. That was all that mattered in that moment.
He could tell the best stories. His imitations of people were so spot on that you would be crying with laughter on the floor. He was so animated while he was talking that you couldn't help be enamored with whatever story he was telling!
My sisters and I would laugh at him because anytime he would come in to the house it was like a windblown whirlwind. He was like Kramer on Seinfeld! He couldn't just walk quietly in the house- he and his presence would come in and overtake the room.
And then, one day, just like that. He was gone. He took his own life. And, even as I type this, I still cannot believe it. How can someone so full of vitality be gone?
Yes, there were the signs- depression, anxiety, but I never pictured life and the world without Will in it. It just wasn't an option in my mind. He was too big-it would never be something he chose. Never.
But...it did. And in one act, his seemingly endless light was extinguished. Such a profoundly dark ending to a life so full of light.
It is no wonder that I have been deeply affected by the events of this week. The accounts of Robin are so similar to Will's. But, I hope that writing about it will move me towards the necessary pain of grief and loss. As a mentor once said, if you try to get over pain, you end up underneath it.
And so the onion gets pulled back another layer. Another step towards the pain of grief.
I miss you, Robin.
I miss you, Will.
The world will never be the same without you.
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.
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