We All Have Hard Days (12)
Diagnosis: Loneliness
Co-morbid with ASD
10/10/14
And here I sit… again. I’ve been thinking about a post on the reality of ASD parental isolation for years, but have been afraid to publish.
And here I sit… desperately needing to talk to someone with no one at all to call. How could I possibly explain my child’s latest antics to a parent of NT children… heck some parents of ASD kids can’t understand my kid’s behaviors and they are up to their eyeballs in their own kids’ stuff. My burdens will not help them.
And here I sit… thinking maybe I should just start working. I have about three projects that need attention, but my heart is not in it now. My mind is wandering the barren portions of my brain searching for perhaps an old friend I forgot about that might like to talk. Undoubtedly, the conversation would come back to me… do I have the energy to lie to protect what people think about our son?
And here I lay… now I’m sinking into the couch, TV on, dog in my lap and tears slowly streaming from the corners of my eye and down my neck. I start some self-diagnosis: is this depression? No, because I fight like hell to stay out of the dark place I lived for too long. This is just loneliness… not the physical ‘being totally alone’ loneliness that many refer too, but the loneliness that’s self-imposed; afraid to reveal too much of our crazy day-to-day antics that would shock and scare folks who live on the outside of my fishbowl.
So here I lay… thinking, if I write something about loneliness, I’m sure to offend someone who considers themselves my friend… I have many friends that I love, but few allowed to really love ALL of us back. I feel so much better after I write. I must purge in hopes that this will help another ASD mom who has built the walls of isolation taller than herself. She can’t see out nor can anyone see inside. This might help another mom feel not so alone.
Now I’m stuck to the couch… my back hurts because my couch sucks, my mouth is dry because I’m too emotionally and physically tired to get up and find a drink, plus my dog is super cute on my lap.
My mind wanders… my phone is right here, I should reach out. But who do I call? Who will listen, not judge, keep confidence and still like my kid. I know some friends will withhold their own great news in an effort to “protect” me. I don’t have time for games. Let me be happy for you, slightly jealous, but rejoicing in your success. Plus it’s a good distraction from our craziness.
Chris calls… from the road trip inquiring about Jake’s day. Today was great! He had a super day at school, great horse lesson, fun supper and went to bed nicely. We prayed together and hugged goodnight. Really, that part of the day couldn’t be better. I don’t mention my own struggles from across the miles for fear of causing any pain to Chris who is working so hard to support me and our special needs son through hundreds of therapies and thousands of dollars spent.
And here I sit… I really needed some water. I sparked myself out of my funk and decided to write. I fear judgment from this post, I also fear pity. I don’t want people to feel sorry for me, I just want someone safe who understands. I don’t want false reassurances or promises that never pan out.
I stop to reflect… my faith tells me I’m never really alone, but Jesus feels distant at times like this. I force myself to focus on the amazing strides Jake has made in the last years and push my exhaustion to the background. Jake is a true blessing in our lives, God shines through him.
Sigh.
My tears are hitting the keyboard… I’m discovering my loneliness is due to my own fears: Afraid of my family being judged, afraid of appearing weak, afraid of people thinking badly of Jake, afraid of people repeating what I tell them in a gossipy fashion, afraid of people being afraid for me.
So here I sit still… feeling so much better for writing. Slightly less afraid of what I’ve written as I know it will help someone else feel a little less lonely. I am aware I may have stirred some emotions in some, but my list of confidants is about 5 people long and I know they “get it” and will stand by me.
I will lie in my bed, feeling better; meditating on this post and the freedom my keyboard has just provided me. I often say these posts are God speaking through my fingertips so when I’m stirred to write, I must write.
God Bless.
Co-morbid with ASD
10/10/14
And here I sit… again. I’ve been thinking about a post on the reality of ASD parental isolation for years, but have been afraid to publish.
And here I sit… desperately needing to talk to someone with no one at all to call. How could I possibly explain my child’s latest antics to a parent of NT children… heck some parents of ASD kids can’t understand my kid’s behaviors and they are up to their eyeballs in their own kids’ stuff. My burdens will not help them.
And here I sit… thinking maybe I should just start working. I have about three projects that need attention, but my heart is not in it now. My mind is wandering the barren portions of my brain searching for perhaps an old friend I forgot about that might like to talk. Undoubtedly, the conversation would come back to me… do I have the energy to lie to protect what people think about our son?
And here I lay… now I’m sinking into the couch, TV on, dog in my lap and tears slowly streaming from the corners of my eye and down my neck. I start some self-diagnosis: is this depression? No, because I fight like hell to stay out of the dark place I lived for too long. This is just loneliness… not the physical ‘being totally alone’ loneliness that many refer too, but the loneliness that’s self-imposed; afraid to reveal too much of our crazy day-to-day antics that would shock and scare folks who live on the outside of my fishbowl.
So here I lay… thinking, if I write something about loneliness, I’m sure to offend someone who considers themselves my friend… I have many friends that I love, but few allowed to really love ALL of us back. I feel so much better after I write. I must purge in hopes that this will help another ASD mom who has built the walls of isolation taller than herself. She can’t see out nor can anyone see inside. This might help another mom feel not so alone.
Now I’m stuck to the couch… my back hurts because my couch sucks, my mouth is dry because I’m too emotionally and physically tired to get up and find a drink, plus my dog is super cute on my lap.
My mind wanders… my phone is right here, I should reach out. But who do I call? Who will listen, not judge, keep confidence and still like my kid. I know some friends will withhold their own great news in an effort to “protect” me. I don’t have time for games. Let me be happy for you, slightly jealous, but rejoicing in your success. Plus it’s a good distraction from our craziness.
Chris calls… from the road trip inquiring about Jake’s day. Today was great! He had a super day at school, great horse lesson, fun supper and went to bed nicely. We prayed together and hugged goodnight. Really, that part of the day couldn’t be better. I don’t mention my own struggles from across the miles for fear of causing any pain to Chris who is working so hard to support me and our special needs son through hundreds of therapies and thousands of dollars spent.
And here I sit… I really needed some water. I sparked myself out of my funk and decided to write. I fear judgment from this post, I also fear pity. I don’t want people to feel sorry for me, I just want someone safe who understands. I don’t want false reassurances or promises that never pan out.
I stop to reflect… my faith tells me I’m never really alone, but Jesus feels distant at times like this. I force myself to focus on the amazing strides Jake has made in the last years and push my exhaustion to the background. Jake is a true blessing in our lives, God shines through him.
Sigh.
My tears are hitting the keyboard… I’m discovering my loneliness is due to my own fears: Afraid of my family being judged, afraid of appearing weak, afraid of people thinking badly of Jake, afraid of people repeating what I tell them in a gossipy fashion, afraid of people being afraid for me.
So here I sit still… feeling so much better for writing. Slightly less afraid of what I’ve written as I know it will help someone else feel a little less lonely. I am aware I may have stirred some emotions in some, but my list of confidants is about 5 people long and I know they “get it” and will stand by me.
I will lie in my bed, feeling better; meditating on this post and the freedom my keyboard has just provided me. I often say these posts are God speaking through my fingertips so when I’m stirred to write, I must write.
God Bless.
When Mommy Cracks, Critters Listen
11/4/13
Why does it take me screaming my head off to get through that skull of his some days?
I feel like I say the same thing a million and two times a week, it's got to go in one day.
Well add to that my awful habit of overbooking myself, juggling too-full-a-plate and living on the edge of a short fuse and it's the perfect combination. The explosion happened yesterday in the car while waiting for gym class.
I'm not proud but since I never yell or raise my voice (has the wrong impact on this super hero) it's always a shock when I do.
So yesterday, "Stop freaking' arguing every point with me!" came flying out of my mouth in a rage and there was nothing I could do. Jake stared at me like I just ripped his arms off and I had nothing left to say but, "go to your class and get away from me." He did great in his class, eyeballs peeled for my next break from the gym floor, and the entire ride home.
In the car, Jake explains that, "when you yell at me I get really scared, mommy." As if I didn't feel like a big enough heel for yelling in the first place, now he has to be all mature about it.
I calmly tried to explain that mommy has a lot of things in her brain. When you keep pounding me with nonsense questions that you know the answer to, in order to get a rise out of me, some days I'm going to crack and it's not pretty.
"I'm sorry I made you mad mommy," oh great now he's piling on... feel the guilt?
Just before bedtime he tells me, "you know mom, next time you are mad and upset with me, you could try using respectful words to get your point across."
Speechless.
Since my snap however, I've had the most well behaved, compliant kid on the block. He's using his manners, talking with respect and following directions.
I guess once in a while, it's worth reminding him about the fearing the mommy! If mommy is not happy, no one is happy!
11/4/13
Why does it take me screaming my head off to get through that skull of his some days?
I feel like I say the same thing a million and two times a week, it's got to go in one day.
Well add to that my awful habit of overbooking myself, juggling too-full-a-plate and living on the edge of a short fuse and it's the perfect combination. The explosion happened yesterday in the car while waiting for gym class.
I'm not proud but since I never yell or raise my voice (has the wrong impact on this super hero) it's always a shock when I do.
So yesterday, "Stop freaking' arguing every point with me!" came flying out of my mouth in a rage and there was nothing I could do. Jake stared at me like I just ripped his arms off and I had nothing left to say but, "go to your class and get away from me." He did great in his class, eyeballs peeled for my next break from the gym floor, and the entire ride home.
In the car, Jake explains that, "when you yell at me I get really scared, mommy." As if I didn't feel like a big enough heel for yelling in the first place, now he has to be all mature about it.
I calmly tried to explain that mommy has a lot of things in her brain. When you keep pounding me with nonsense questions that you know the answer to, in order to get a rise out of me, some days I'm going to crack and it's not pretty.
"I'm sorry I made you mad mommy," oh great now he's piling on... feel the guilt?
Just before bedtime he tells me, "you know mom, next time you are mad and upset with me, you could try using respectful words to get your point across."
Speechless.
Since my snap however, I've had the most well behaved, compliant kid on the block. He's using his manners, talking with respect and following directions.
I guess once in a while, it's worth reminding him about the fearing the mommy! If mommy is not happy, no one is happy!
Conflicted Crossroads
December 14, 2011
Our world progresses in baby steps.
Super Hero Jake sat at the table for an entire meal!
He put his pants on frontwards! (hell he put pants on at all)
Jake finished two math problems independently!
We celebrate, we dance and we work to build him up one tiny step at a time.
All our baby steps have led us to some very big decisions and we’re facing giant leaps in the near future. I feel as if we’re standing at the fork in the road. Do we try to hang on to what’s comfortable (easy) or leap into the new unknown (difficult)? How do we help our conflicted critter?
Look left, there’s a school where he doesn’t fit. Look right, another school where he could struggle to succeed, but more opportunities and resources. Right in front of us looks like one of those fancy ‘round-abouts’, where we keep going around and around, questioning and questioning, second-guessing and third-guessing.
Jake is VERY happy in our very structured home but of course is perseverating on impending changes. He’s compliant for the most part, does his recycling, garbage, and bathroom cleanup jobs, and helps make and clean up dinner. Sticking to schedule, his time is compartmentalized between his jobs, helping me, and limited free-play time. The expectations are there, the jobs are clear and they don’t change. Rewards are known and earned.
These past two weeks, because of my own insane scheduling faux-pas, we’ve had 3 doctor appointments and a phone conference with another. Every single doctor commented on how calm, cool and collected Jake presents right now. He sat in the appointments and listened, followed directions and answered questions appropriately. Granted, his diagnosis was tweaked a tad by the Neurodevelopmental Pediatrician, but he was the most impressed with Jake’s behavior.
ALL commented on the fact that, while his attention is fleeting, he looks great and doesn’t sound like the kid we describe from incidents at school.
Then we sit in the re-eval/IEP meeting and listen to their description of our social Super Hero. We hear about his inability to sit, his inappropriate behavior / comments as well as his outbursts and aggressions throughout the day. Attention span of less than a minute, the need for constant reinforcement (we’re talking constant!) and 1:1 instruction. Something doesn't add up. And might I add, standardized testing is a joke! (that's putting it kindly)
See the round-about?
We love the teachers God has put in our lives, I know for a fact they adore Jake, respect our family and the level of dedication/commitment we have for our Super Hero. We feel that, appreciate that, but we all know he’s not in the right place.
Now we wait for the next big step; Central Office IEP meeting. Mid-stride we hold our breath before the next foot hits the floor. My head is spinning and my heart is breaking as Jake asks day after day where our journey will take us, while continuing to struggle at school. We pray we won’t need mediation (lawyers) to get Jake into a happy private placement where he’ll actually be available to learn but are prepared to fight.
Once we reach that desired destination, doors will open and the sky is the limit.
December 14, 2011
Our world progresses in baby steps.
Super Hero Jake sat at the table for an entire meal!
He put his pants on frontwards! (hell he put pants on at all)
Jake finished two math problems independently!
We celebrate, we dance and we work to build him up one tiny step at a time.
All our baby steps have led us to some very big decisions and we’re facing giant leaps in the near future. I feel as if we’re standing at the fork in the road. Do we try to hang on to what’s comfortable (easy) or leap into the new unknown (difficult)? How do we help our conflicted critter?
Look left, there’s a school where he doesn’t fit. Look right, another school where he could struggle to succeed, but more opportunities and resources. Right in front of us looks like one of those fancy ‘round-abouts’, where we keep going around and around, questioning and questioning, second-guessing and third-guessing.
Jake is VERY happy in our very structured home but of course is perseverating on impending changes. He’s compliant for the most part, does his recycling, garbage, and bathroom cleanup jobs, and helps make and clean up dinner. Sticking to schedule, his time is compartmentalized between his jobs, helping me, and limited free-play time. The expectations are there, the jobs are clear and they don’t change. Rewards are known and earned.
These past two weeks, because of my own insane scheduling faux-pas, we’ve had 3 doctor appointments and a phone conference with another. Every single doctor commented on how calm, cool and collected Jake presents right now. He sat in the appointments and listened, followed directions and answered questions appropriately. Granted, his diagnosis was tweaked a tad by the Neurodevelopmental Pediatrician, but he was the most impressed with Jake’s behavior.
ALL commented on the fact that, while his attention is fleeting, he looks great and doesn’t sound like the kid we describe from incidents at school.
Then we sit in the re-eval/IEP meeting and listen to their description of our social Super Hero. We hear about his inability to sit, his inappropriate behavior / comments as well as his outbursts and aggressions throughout the day. Attention span of less than a minute, the need for constant reinforcement (we’re talking constant!) and 1:1 instruction. Something doesn't add up. And might I add, standardized testing is a joke! (that's putting it kindly)
See the round-about?
We love the teachers God has put in our lives, I know for a fact they adore Jake, respect our family and the level of dedication/commitment we have for our Super Hero. We feel that, appreciate that, but we all know he’s not in the right place.
Now we wait for the next big step; Central Office IEP meeting. Mid-stride we hold our breath before the next foot hits the floor. My head is spinning and my heart is breaking as Jake asks day after day where our journey will take us, while continuing to struggle at school. We pray we won’t need mediation (lawyers) to get Jake into a happy private placement where he’ll actually be available to learn but are prepared to fight.
Once we reach that desired destination, doors will open and the sky is the limit.
--------------------------------------------------
No Leaf Unturned
November 16, 2011
It’s really hard for me to believe that winter is almost here. This school year has been so challenging and unsettling for Jake that the “mom” (okay neurotic mom) in me just wants to make things easier for our struggling Super Hero. Time has flown by faster than I can move my tired body.
Every day begins with my own obsessing. I find myself frantically seeking answers around every corner, behind every door and under every fallen leaf. That’s a lot of leaves considering our front yard has 3 very big Maples. The pure emotion of it all is exhausting for me; let alone what it’s doing to our super sensitive kiddo.
Jake’s so stressed he’s back to running in circles once his feet hit the floor in the morning, chewing his shirt sleeves before heading to school, and requiring the next day’s schedule written out before he closes his eyes at night. His chemical make-up is changing right before our eyes.
Which fallen leaf is hiding the answer? Better yet, which leaf holds the right questions?
The large, vibrant red Maple leaves remind me of how much deep passion our family has for each other. No amount of stress, strain or setbacks can break us apart. Ironically, many red ones still cling to the branches long after the snow falls. The green leaves that have fallen before their time, reflect our Super hero himself; so young yet breaking apart from the stability he once had, landing on the cold ground and seeking comfort.
As I sit and reflect on all the obstacles before us now and in these coming transitional years, tears fill my eyes and as pain fills my heart. It’s overwhelming. What is the next step? Which neuro/psych/IQ test will help him down the road? Is there a school to better suit his needs (which seem to be multiplying)? What if there’s not? Where will he live when he’s 22? Did I really just have 14 straight days full of doctors, principals, psychologists, school tours and interviews? YES.
My life is on hold for the sake of Jake, but I cannot let myself get buried by a blanket of leaves called “the future” either. While I tend to take every conversation to heart and focus years ahead of me, maybe I need to grab my rake now. Each leaf in the front yard needs to be overturned as every one of Jake’s needs, need to be met, today.
How ‘bout if I turn over the yellow leaf that reminds me of the days Jake didn’t talk; the rusty-colored leaf could signify the wheels of his old ‘green guy’ ride-on which he pushed and ran behind for hundreds of miles around this neighborhood just to keep his body regulated; bright orange the endless days of spinning frying pan lids around the house; deep roots of the trees stand for the progress we’ve made with help from all those who love our Jake.
Then there are the leaves that blow into our yard from the neighbors’ trees. Those big Oaks, I’ll leave them alone – I don’t have the energy to answer those “Why is he doing that?” and “When will he get better?” questions from unintentionally hurtful onlookers.
Thanks to my awesome Chris for beating the positives and the ‘here and now’ into my thick skull even if it took days of watching me suffer then raising your voice to do it. Thanks Dr. P and Dr. B for forcing me into THIS moment and not 18 years down the road. Your guidance is immeasurable. Robin S. and Rachel A. your patience through my complaining is so appreciated.
I promise to and will focus on the leaves, not the forest, if you all promise to stick with this nutty and exasperated mom to the end.
Plus another positive, my backyard has no trees.
No Leaf Unturned
November 16, 2011
It’s really hard for me to believe that winter is almost here. This school year has been so challenging and unsettling for Jake that the “mom” (okay neurotic mom) in me just wants to make things easier for our struggling Super Hero. Time has flown by faster than I can move my tired body.
Every day begins with my own obsessing. I find myself frantically seeking answers around every corner, behind every door and under every fallen leaf. That’s a lot of leaves considering our front yard has 3 very big Maples. The pure emotion of it all is exhausting for me; let alone what it’s doing to our super sensitive kiddo.
Jake’s so stressed he’s back to running in circles once his feet hit the floor in the morning, chewing his shirt sleeves before heading to school, and requiring the next day’s schedule written out before he closes his eyes at night. His chemical make-up is changing right before our eyes.
Which fallen leaf is hiding the answer? Better yet, which leaf holds the right questions?
The large, vibrant red Maple leaves remind me of how much deep passion our family has for each other. No amount of stress, strain or setbacks can break us apart. Ironically, many red ones still cling to the branches long after the snow falls. The green leaves that have fallen before their time, reflect our Super hero himself; so young yet breaking apart from the stability he once had, landing on the cold ground and seeking comfort.
As I sit and reflect on all the obstacles before us now and in these coming transitional years, tears fill my eyes and as pain fills my heart. It’s overwhelming. What is the next step? Which neuro/psych/IQ test will help him down the road? Is there a school to better suit his needs (which seem to be multiplying)? What if there’s not? Where will he live when he’s 22? Did I really just have 14 straight days full of doctors, principals, psychologists, school tours and interviews? YES.
My life is on hold for the sake of Jake, but I cannot let myself get buried by a blanket of leaves called “the future” either. While I tend to take every conversation to heart and focus years ahead of me, maybe I need to grab my rake now. Each leaf in the front yard needs to be overturned as every one of Jake’s needs, need to be met, today.
How ‘bout if I turn over the yellow leaf that reminds me of the days Jake didn’t talk; the rusty-colored leaf could signify the wheels of his old ‘green guy’ ride-on which he pushed and ran behind for hundreds of miles around this neighborhood just to keep his body regulated; bright orange the endless days of spinning frying pan lids around the house; deep roots of the trees stand for the progress we’ve made with help from all those who love our Jake.
Then there are the leaves that blow into our yard from the neighbors’ trees. Those big Oaks, I’ll leave them alone – I don’t have the energy to answer those “Why is he doing that?” and “When will he get better?” questions from unintentionally hurtful onlookers.
Thanks to my awesome Chris for beating the positives and the ‘here and now’ into my thick skull even if it took days of watching me suffer then raising your voice to do it. Thanks Dr. P and Dr. B for forcing me into THIS moment and not 18 years down the road. Your guidance is immeasurable. Robin S. and Rachel A. your patience through my complaining is so appreciated.
I promise to and will focus on the leaves, not the forest, if you all promise to stick with this nutty and exasperated mom to the end.
Plus another positive, my backyard has no trees.
--------------------------------------------------
When the Telephone Rings
September 15, 2011
I don’t remember third grade as being traumatic. I recall it as the year I got my very long hair cut short, the year I really started learning independence by walking to and from school with friends or alone and the year I learned to spell phenomenon. I remember struggling to make friends at a new school but really liking my teacher.
There is something about this year that has Jake completely unglued. Since school started, I think I’ve met with, been called by or emailed 90 % of the days from the school. The message always the same: disruptive, rude and aggressive. No one knows the exact trigger for this year’s tantrums, but the intensity has definitely been stepped up a level.
My phone rarely rings. These days when it does, the breath leaves my chest, my shoulders fall and tears crest my eyes. Please don’t be from the school. Please don’t be from the school. It’s the school. I half-hope the voice on the other end is the school nurse telling me he got a scrape on the playground instead of it being our fabulous teacher explaining how he became aggressive with teachers/students.
Today, another call. I don’t need to detail the exact behavior but it was enough for me to be notified, again. I’m depleted, exhausted and frustrated. We’re all bashing our heads against the wall this year trying to figure out what’s going on? Calls to my on-demand behaviorist sister results in a brutal hand for me to deal to the Super hero. I don’t know if I can do it.
Turn off all emotion. Deal with him like he’s any another SPED kid I’ve worked with in the past. He’s not mine. Since I am on the same level as the IPod and ice cream when it comes to favorite things in Jake’s life we’re going to hit him where it hurts.
Remove the fun, remove the treat, remove me! Gameplan made: no IPod, no ice cream (which he bought), no snuggles before bed.
He popped off the bus with a giant bag full of birthday gifts from friends and came bounding in the house with the biggest smile. I opened the door for him then walked away. “Hi mommy, it’s so nice to see you again,” he says while hanging up his book bag…. Crap this is going to be harder than I thought. I reply with a very flat “hi”.
“Look mommy what I got for my birthday!”
“That’s nice,” monotone. (ugh).
He’s keen to something and comes over to hug me while I’m making dinner. I look at him (trying to savor that feeling of the hug) while removing his arms from my waist and turn my back towards him. (uuuuhhh)
“What’s wrong mommy?”
“I don’t want to be near someone who is mean to friends and teachers,” the look on his face now almost brought tears to my eyes but I was determined to ‘never let him see me sweat.’ “Go sit down and get ready to eat.”
I placed the food in front of him at the table and sat across instead of the usual seat next to him. “Thanks for making me dinner, mommy. I love these noodles and broccoli!” he’s aware and seriously sucking up.
He can see the sadness in my face, read me like a book, so he hands me my sunglasses. “Here mommy, will you wear these to cover up your sad eyes.”
“No. Eat your food, then you’re going to take a shower and go to bed,” I blurt out while putting the newspaper up in front of my face so he can’t see me almost crying.
“Can I play Ipod before bed?”
“No”
“WHYYYYYYY not?” he screaches as his voice rises to panic-high-pitch.
“It’s put away until your behavior improves.”
The fuse is lit. He’s up from the table and spiraling down. He runs to the front door to elope as usual, but actually stopped himself. He knows if he gets out of my sight when he’s enraged I call the police. Instead I started texting Chris and my backup friends (thanks AN for being there) incase Jake starts getting aggressive with me.
He ran upstairs to the ‘quiet room’ and threw himself on to the bed screaming. (that was excellent) He cried and cried for 20 minutes, then came downstairs. The scream out continued as I sat and read the newpaper at the kitchen table, not reacting. The crying sounds soon turned into monkey sounds, growling, and groans of agony. He tries to hurt himself by pounding on his throat and throw up. You don’t know how badly I wanted to hug him right then and help him calm his body. I stayed strong. I don’t know how.
Thirty minutes pass, he’s hoarse, exhausted, and eyes swollen shut. I quietly said, “You need to take a shower and get yourself cleaned up before bed,” as monotone as I could. He said “ok” and went upstairs to turn on the shower.
Instead of helping him in the shower, I folded laundry in the next room. I didn’t help one bit but did prompt to use shampoo and brush teeth. “Mommy, will you help me go to bed? What am I going to dream about?”
“No and dream about whatever you want,” I said flatly while dying inside. Bedtime prayers and talk of happy dreams are usually our happiest and snuggliest times before bed. Just kill me now.
I swear God was sending me strength, because now I wanted to die. I tried to recall that feeling of his hug earlier in the evening and draw from that. So hard.
“Go get in bed.”
He did. I tried one time to adjust his blankets, but it wasn’t perfectly symmetrical, as usual.
“Fix it yourself. Goodnight,” and I walked out of the room.
As I was shutting the door behind me I heard Jake say as he was climbing out of the bed to follow me…
“Mommy will you be happy in the morning?”
“I don’t know Jake, that depends on you.”
Finding the strength to get through to this super hero is absolutely draining. Thank God for my stamina and determination, thanks to Chris for his patience when I cry nightly that I just can’t do this anymore, and thanks to today's supporters, Julie, Andrew, Jason, Diane … the list goes on and on.
Tomorrow I will NOT answer the phone.
When the Telephone Rings
September 15, 2011
I don’t remember third grade as being traumatic. I recall it as the year I got my very long hair cut short, the year I really started learning independence by walking to and from school with friends or alone and the year I learned to spell phenomenon. I remember struggling to make friends at a new school but really liking my teacher.
There is something about this year that has Jake completely unglued. Since school started, I think I’ve met with, been called by or emailed 90 % of the days from the school. The message always the same: disruptive, rude and aggressive. No one knows the exact trigger for this year’s tantrums, but the intensity has definitely been stepped up a level.
My phone rarely rings. These days when it does, the breath leaves my chest, my shoulders fall and tears crest my eyes. Please don’t be from the school. Please don’t be from the school. It’s the school. I half-hope the voice on the other end is the school nurse telling me he got a scrape on the playground instead of it being our fabulous teacher explaining how he became aggressive with teachers/students.
Today, another call. I don’t need to detail the exact behavior but it was enough for me to be notified, again. I’m depleted, exhausted and frustrated. We’re all bashing our heads against the wall this year trying to figure out what’s going on? Calls to my on-demand behaviorist sister results in a brutal hand for me to deal to the Super hero. I don’t know if I can do it.
Turn off all emotion. Deal with him like he’s any another SPED kid I’ve worked with in the past. He’s not mine. Since I am on the same level as the IPod and ice cream when it comes to favorite things in Jake’s life we’re going to hit him where it hurts.
Remove the fun, remove the treat, remove me! Gameplan made: no IPod, no ice cream (which he bought), no snuggles before bed.
He popped off the bus with a giant bag full of birthday gifts from friends and came bounding in the house with the biggest smile. I opened the door for him then walked away. “Hi mommy, it’s so nice to see you again,” he says while hanging up his book bag…. Crap this is going to be harder than I thought. I reply with a very flat “hi”.
“Look mommy what I got for my birthday!”
“That’s nice,” monotone. (ugh).
He’s keen to something and comes over to hug me while I’m making dinner. I look at him (trying to savor that feeling of the hug) while removing his arms from my waist and turn my back towards him. (uuuuhhh)
“What’s wrong mommy?”
“I don’t want to be near someone who is mean to friends and teachers,” the look on his face now almost brought tears to my eyes but I was determined to ‘never let him see me sweat.’ “Go sit down and get ready to eat.”
I placed the food in front of him at the table and sat across instead of the usual seat next to him. “Thanks for making me dinner, mommy. I love these noodles and broccoli!” he’s aware and seriously sucking up.
He can see the sadness in my face, read me like a book, so he hands me my sunglasses. “Here mommy, will you wear these to cover up your sad eyes.”
“No. Eat your food, then you’re going to take a shower and go to bed,” I blurt out while putting the newspaper up in front of my face so he can’t see me almost crying.
“Can I play Ipod before bed?”
“No”
“WHYYYYYYY not?” he screaches as his voice rises to panic-high-pitch.
“It’s put away until your behavior improves.”
The fuse is lit. He’s up from the table and spiraling down. He runs to the front door to elope as usual, but actually stopped himself. He knows if he gets out of my sight when he’s enraged I call the police. Instead I started texting Chris and my backup friends (thanks AN for being there) incase Jake starts getting aggressive with me.
He ran upstairs to the ‘quiet room’ and threw himself on to the bed screaming. (that was excellent) He cried and cried for 20 minutes, then came downstairs. The scream out continued as I sat and read the newpaper at the kitchen table, not reacting. The crying sounds soon turned into monkey sounds, growling, and groans of agony. He tries to hurt himself by pounding on his throat and throw up. You don’t know how badly I wanted to hug him right then and help him calm his body. I stayed strong. I don’t know how.
Thirty minutes pass, he’s hoarse, exhausted, and eyes swollen shut. I quietly said, “You need to take a shower and get yourself cleaned up before bed,” as monotone as I could. He said “ok” and went upstairs to turn on the shower.
Instead of helping him in the shower, I folded laundry in the next room. I didn’t help one bit but did prompt to use shampoo and brush teeth. “Mommy, will you help me go to bed? What am I going to dream about?”
“No and dream about whatever you want,” I said flatly while dying inside. Bedtime prayers and talk of happy dreams are usually our happiest and snuggliest times before bed. Just kill me now.
I swear God was sending me strength, because now I wanted to die. I tried to recall that feeling of his hug earlier in the evening and draw from that. So hard.
“Go get in bed.”
He did. I tried one time to adjust his blankets, but it wasn’t perfectly symmetrical, as usual.
“Fix it yourself. Goodnight,” and I walked out of the room.
As I was shutting the door behind me I heard Jake say as he was climbing out of the bed to follow me…
“Mommy will you be happy in the morning?”
“I don’t know Jake, that depends on you.”
Finding the strength to get through to this super hero is absolutely draining. Thank God for my stamina and determination, thanks to Chris for his patience when I cry nightly that I just can’t do this anymore, and thanks to today's supporters, Julie, Andrew, Jason, Diane … the list goes on and on.
Tomorrow I will NOT answer the phone.
--------------------------------------------
How to Survive Being Sick....
(so sick I forgot the date!)
CAUTION: Written while under the influence of serious prescription cold medication!
So how does a mom survive being sick when you have the responsibility of a Super Hero?
The hardest thing about parenting any child is finding time to be sick. There’s no time to be sick when you’re the primary caregiver, whether you're a mom or a dad. How do you get kids up, fed, dressed and out the door when you can’t budge from your bed? Lifting your head from the pillow is the most energy you want to spend for the day, and the thought of being civil to any human is a pipe dream.
I haven’t had many sick days with Jake. He’s thankfully a pretty healthy kid and I threaten the lives of anyone who enters our front door while infected with anything. So when he gets a cold or crud, I’m usually healthy enough to deal with him and shield myself from his germs. But this time it was different.
I got sick first. Contracted the crud and then promptly (yet unknowingly) shared it with Jake. My first thought was oh man this is so going to suck. How am I going to do the long weekend and morning run around the lake? The dog jog? The swimming lessons? The scooter-bike rides in the neighborhood? The constant redirection of his stimming, ignoring his jabbering, and answering computer questions?
In the dark of night, the first cough came from his room, Ugh. Followed by a sniffle, complaints of an ear ache, Double Ugh. I’m awake in the middle of the night, can barely breathe and can’t stop coughing myself. Dreading the sunrise, I lay wide awake and try to figure out how I’ll get through the day, keeping up with his Super Powered Energy level. I pray Chris can rearrange his work schedule to ‘run’ him in the morning and rattle my sleepy brain thinking about relief-sitters for the afternoon shift. Soon, I hear Jake stumble down the hallway, and I asked if he wanted breakfast. A flat NO came from the exhausted kiddo. Then my wheels start turning… Well lookie there. I don’t have to do a darn thing! Hot Damn! For the first time ever, I slept in until 7:00 AM!
When I came downstairs Jake was curled up on the couch IPod in hand. I swear he didn’t move for an hour. He doesn’t ever do anything for an hour. Chris thankfully took him to play for the morning downtown and I slept, resting up for what the afternoon would bring.
When Jake came back, he couldn’t move. So here I am, all up and ready to go and Jake plops himself in his “office” and didn’t move. I swear he watched the same Wow Wow Wubzy episode two-dozen times. I bribed him to get up and make cookies with me. Offers of going to playground, for a dog jog, to the neighbor’s house were met with “I’m tired today,” “Maybe tomorrow I’ll go to the playground,” and “what can we eat next?”
So needless to say, I was in this house the entire day. A very short, abbreviated bike/scooter ride before bed with the reward of ice cream, burned off the dribbles of his remaining energy before bed. He was wiped out. I threw together supper in about 10 minutes, we ate, showered and he’s down for the count.
So while I know the biggest fear of this, and might I say, many Super Hero moms is what we’re going to do if we get sick, die or fall seriously ill one day, no one can take care of Jakey the way I do. No one else knows how he likes his morning sausage with a drop of maple syrup in the center, takes his pills in the same order every morning: swallower, chewy, melty, how to cut the waffle to avoid meltdown or understands exactly what triggers that ‘orbiter’ thing he does with his right arm in the air means… But, now I know how to survive when I do get sick.
Just make sure he gets sick too!
Pretty warped ehy! I have my moments!
How to Survive Being Sick....
(so sick I forgot the date!)
CAUTION: Written while under the influence of serious prescription cold medication!
So how does a mom survive being sick when you have the responsibility of a Super Hero?
The hardest thing about parenting any child is finding time to be sick. There’s no time to be sick when you’re the primary caregiver, whether you're a mom or a dad. How do you get kids up, fed, dressed and out the door when you can’t budge from your bed? Lifting your head from the pillow is the most energy you want to spend for the day, and the thought of being civil to any human is a pipe dream.
I haven’t had many sick days with Jake. He’s thankfully a pretty healthy kid and I threaten the lives of anyone who enters our front door while infected with anything. So when he gets a cold or crud, I’m usually healthy enough to deal with him and shield myself from his germs. But this time it was different.
I got sick first. Contracted the crud and then promptly (yet unknowingly) shared it with Jake. My first thought was oh man this is so going to suck. How am I going to do the long weekend and morning run around the lake? The dog jog? The swimming lessons? The scooter-bike rides in the neighborhood? The constant redirection of his stimming, ignoring his jabbering, and answering computer questions?
In the dark of night, the first cough came from his room, Ugh. Followed by a sniffle, complaints of an ear ache, Double Ugh. I’m awake in the middle of the night, can barely breathe and can’t stop coughing myself. Dreading the sunrise, I lay wide awake and try to figure out how I’ll get through the day, keeping up with his Super Powered Energy level. I pray Chris can rearrange his work schedule to ‘run’ him in the morning and rattle my sleepy brain thinking about relief-sitters for the afternoon shift. Soon, I hear Jake stumble down the hallway, and I asked if he wanted breakfast. A flat NO came from the exhausted kiddo. Then my wheels start turning… Well lookie there. I don’t have to do a darn thing! Hot Damn! For the first time ever, I slept in until 7:00 AM!
When I came downstairs Jake was curled up on the couch IPod in hand. I swear he didn’t move for an hour. He doesn’t ever do anything for an hour. Chris thankfully took him to play for the morning downtown and I slept, resting up for what the afternoon would bring.
When Jake came back, he couldn’t move. So here I am, all up and ready to go and Jake plops himself in his “office” and didn’t move. I swear he watched the same Wow Wow Wubzy episode two-dozen times. I bribed him to get up and make cookies with me. Offers of going to playground, for a dog jog, to the neighbor’s house were met with “I’m tired today,” “Maybe tomorrow I’ll go to the playground,” and “what can we eat next?”
So needless to say, I was in this house the entire day. A very short, abbreviated bike/scooter ride before bed with the reward of ice cream, burned off the dribbles of his remaining energy before bed. He was wiped out. I threw together supper in about 10 minutes, we ate, showered and he’s down for the count.
So while I know the biggest fear of this, and might I say, many Super Hero moms is what we’re going to do if we get sick, die or fall seriously ill one day, no one can take care of Jakey the way I do. No one else knows how he likes his morning sausage with a drop of maple syrup in the center, takes his pills in the same order every morning: swallower, chewy, melty, how to cut the waffle to avoid meltdown or understands exactly what triggers that ‘orbiter’ thing he does with his right arm in the air means… But, now I know how to survive when I do get sick.
Just make sure he gets sick too!
Pretty warped ehy! I have my moments!
-------------------------------------------------
Alone on the Spectrum
September 1, 2011
It’s a lonely world this ASD play-land. Some of the loneliness is inevitable, some of it is self-imposed. No matter how many moms I know, no matter how big my family is, no matter how many spectrum moms I’ve friended in real life and on Facebook, there are lonely days. No question.
I’ve been thinking about writing on this topic for months but didn’t want pity nor did I want to offend. But the reality became starkly apparent the other day when I synched my Blackberry. I noticed the emails I sent/received over the last 10 days all went to school administration or teachers, (and a few flute friends). The last six phone calls received to my phone have come from Chris, Jake’s school and doctor offices.
The friend-filled life adults keep before kids, all seems to shift shortly after diagnosis. The struggle to find friends who understand became almost as difficult as trying to make sense of our Superhero’s differences. Many friends with same-age children were the ones to throw the first critical blows, knowingly or not. Questioning, “Why is he doing that?”, “Oh he hasn’t pointed yet?”, “How many words does he have?” Devastating, demeaning and depressing.
Even friends I’ve known for years, not all of them, can unknowingly disappoint: the comparisons to their kids don’t end. Nor do the puzzled looks when I explain a recent episode, or what Jake is working on in school. It hurts, it’s tiring and I’ve learned to protect myself. Many friendships fall away and it’s hard to get back in.
I tend to just stop trying and gloss over the dirty details. Choice: isolation. It’s not the best choice, but in my case it’s sanity saving! I find myself choosing to be alone with my writing, my flute or prayers rather than answer a barrage of questions that leave even seasoned parents shaking their heads and rolling their eyes.
I started to find friends in other places: church, teachers at school, and doctor’s offices. I’m not sure if I was searching for someone to listen to me vent, someone to just believe/understand me or someone with answers. It didn’t matter if they had kids; they needed to have a non-judgmental brain and love in their hearts. I’ve found a few close friends, rekindled some, who are near and dear, they don’t criticize or question, they just ARE. (You know who you are too!)
So the questions: How’s school going? Does Jake like his classmates? How are his classes? Are all met with the same answer: an exasperated “FINE. It’s going great. Jake loves school.” The less I reveal the fewer questions I have to answer and the more I can be proud of Jake’s most recent accomplishments.
One day, our circle of friends may shift again I’m sure. But life on the spectrum is a very special place for very strong parents. If you want to know what you can do to help a parent of a super child just tell them they’re doing a great job, whether you believe it or not.
Alone on the Spectrum
September 1, 2011
It’s a lonely world this ASD play-land. Some of the loneliness is inevitable, some of it is self-imposed. No matter how many moms I know, no matter how big my family is, no matter how many spectrum moms I’ve friended in real life and on Facebook, there are lonely days. No question.
I’ve been thinking about writing on this topic for months but didn’t want pity nor did I want to offend. But the reality became starkly apparent the other day when I synched my Blackberry. I noticed the emails I sent/received over the last 10 days all went to school administration or teachers, (and a few flute friends). The last six phone calls received to my phone have come from Chris, Jake’s school and doctor offices.
The friend-filled life adults keep before kids, all seems to shift shortly after diagnosis. The struggle to find friends who understand became almost as difficult as trying to make sense of our Superhero’s differences. Many friends with same-age children were the ones to throw the first critical blows, knowingly or not. Questioning, “Why is he doing that?”, “Oh he hasn’t pointed yet?”, “How many words does he have?” Devastating, demeaning and depressing.
Even friends I’ve known for years, not all of them, can unknowingly disappoint: the comparisons to their kids don’t end. Nor do the puzzled looks when I explain a recent episode, or what Jake is working on in school. It hurts, it’s tiring and I’ve learned to protect myself. Many friendships fall away and it’s hard to get back in.
I tend to just stop trying and gloss over the dirty details. Choice: isolation. It’s not the best choice, but in my case it’s sanity saving! I find myself choosing to be alone with my writing, my flute or prayers rather than answer a barrage of questions that leave even seasoned parents shaking their heads and rolling their eyes.
I started to find friends in other places: church, teachers at school, and doctor’s offices. I’m not sure if I was searching for someone to listen to me vent, someone to just believe/understand me or someone with answers. It didn’t matter if they had kids; they needed to have a non-judgmental brain and love in their hearts. I’ve found a few close friends, rekindled some, who are near and dear, they don’t criticize or question, they just ARE. (You know who you are too!)
So the questions: How’s school going? Does Jake like his classmates? How are his classes? Are all met with the same answer: an exasperated “FINE. It’s going great. Jake loves school.” The less I reveal the fewer questions I have to answer and the more I can be proud of Jake’s most recent accomplishments.
One day, our circle of friends may shift again I’m sure. But life on the spectrum is a very special place for very strong parents. If you want to know what you can do to help a parent of a super child just tell them they’re doing a great job, whether you believe it or not.
--------------------------------------------------------------
Squishy to Solid, Outlasting a Super Hero
August 3, 2011
I’ve always wanted to learn the martial arts. The calmness, control and strength needed to successfully take part in the sport are something I’ve admired from afar but hesitated to attempt.
Now, self-defense, through kick boxing and martial arts, is a necessity. When you have a Super Hero who rages and can lose control of his Super muscles, there will come a day when he can kick my butt.
While my husband has no problem in the strength department, I am another story. I can walk, jog, bike, swim and hit a ball with the best of them, but deflecting and blocking punches and kicks from a 100+ pound kiddo are a completely different story.
It doesn’t happen often, but there are days when Jake just comes completely unhinged. Whether he’s tired, hungry, or meds are off -- it happens. This weekend, he got so mad and frustrated; he slapped me in the stomach, hard enough to nearly take my wind. His open hand left a red, stinging mark for a while, but the damage to my heart will last a lifetime. My Super Powered Patience (thanks AN) allowed me to be very restrained so I didn’t flinch. I amazed myself, trust me, and was quietly talking to myself, breathe, don’t look mad, breathe, don’t make eye contact, breathe and don’t raise your voice. Damn I am good.
Hello Backfire!
Since I didn’t react to the hit, remember he craves intense reactions, he moved closer to me, still trying to make me mad, he spat in my face. Although I believe spitting is one of the most disrespectful acts one human can do to another, there’s no meaning attached to it for Jake. He was so desperate to cause an angry reaction that it’s all he could come up with… he’d try anything. My only reaction here was to tell him to take the towel and wipe off my face. He did.
He eventually apologized to me, God and pinky promised never to hit me again… but the fine details of the evening pale in comparison to the UREKA moment that slapped me in the head, next.
Holy Cow this kid is really strong.
This kid can become enraged.
This kid could really hurt people.
This is MY KID.
MY KID CAN HURT ME!
Intensely sad. Very scary. But it’s life with Autism, for us. I need to stay stronger than and one step ahead of him. Bigger, stronger, faster... well bigger and stronger. I'll never be faster.
During my first kick boxing class, mixed feelings were flowing through my brain as fast as my pounding/sputtering heart could carry them. I had on the gloves and was learning to punch properly on a bag. I struggled to shake the recurring thought from my head: one day I may have to defend myself from the young man God has entrusted to us. The same gorgeous guy who HAS CHANGED OUR LIVES AND SHARES MY HEART.
Knowing this, my strength and health have suddenly become top priority. All the friends God has put in place; husband, doctors, friends, therapists, teachers, coaches all support me in this mission because they have seen Jake’s rage strength and size. He no longer just pees or pukes on me, it’s up to another very physical level. He can put his fist through drywall and slam doors nearly off the hinges.
Yet another new chapter has begun. I force myself to watch what I eat, get my rest and learn all I can about Super Heroes so I am here for mine… while now fighting desperately to protect myself against him.
Squishy to Solid, Outlasting a Super Hero
August 3, 2011
I’ve always wanted to learn the martial arts. The calmness, control and strength needed to successfully take part in the sport are something I’ve admired from afar but hesitated to attempt.
Now, self-defense, through kick boxing and martial arts, is a necessity. When you have a Super Hero who rages and can lose control of his Super muscles, there will come a day when he can kick my butt.
While my husband has no problem in the strength department, I am another story. I can walk, jog, bike, swim and hit a ball with the best of them, but deflecting and blocking punches and kicks from a 100+ pound kiddo are a completely different story.
It doesn’t happen often, but there are days when Jake just comes completely unhinged. Whether he’s tired, hungry, or meds are off -- it happens. This weekend, he got so mad and frustrated; he slapped me in the stomach, hard enough to nearly take my wind. His open hand left a red, stinging mark for a while, but the damage to my heart will last a lifetime. My Super Powered Patience (thanks AN) allowed me to be very restrained so I didn’t flinch. I amazed myself, trust me, and was quietly talking to myself, breathe, don’t look mad, breathe, don’t make eye contact, breathe and don’t raise your voice. Damn I am good.
Hello Backfire!
Since I didn’t react to the hit, remember he craves intense reactions, he moved closer to me, still trying to make me mad, he spat in my face. Although I believe spitting is one of the most disrespectful acts one human can do to another, there’s no meaning attached to it for Jake. He was so desperate to cause an angry reaction that it’s all he could come up with… he’d try anything. My only reaction here was to tell him to take the towel and wipe off my face. He did.
He eventually apologized to me, God and pinky promised never to hit me again… but the fine details of the evening pale in comparison to the UREKA moment that slapped me in the head, next.
Holy Cow this kid is really strong.
This kid can become enraged.
This kid could really hurt people.
This is MY KID.
MY KID CAN HURT ME!
Intensely sad. Very scary. But it’s life with Autism, for us. I need to stay stronger than and one step ahead of him. Bigger, stronger, faster... well bigger and stronger. I'll never be faster.
During my first kick boxing class, mixed feelings were flowing through my brain as fast as my pounding/sputtering heart could carry them. I had on the gloves and was learning to punch properly on a bag. I struggled to shake the recurring thought from my head: one day I may have to defend myself from the young man God has entrusted to us. The same gorgeous guy who HAS CHANGED OUR LIVES AND SHARES MY HEART.
Knowing this, my strength and health have suddenly become top priority. All the friends God has put in place; husband, doctors, friends, therapists, teachers, coaches all support me in this mission because they have seen Jake’s rage strength and size. He no longer just pees or pukes on me, it’s up to another very physical level. He can put his fist through drywall and slam doors nearly off the hinges.
Yet another new chapter has begun. I force myself to watch what I eat, get my rest and learn all I can about Super Heroes so I am here for mine… while now fighting desperately to protect myself against him.
----------------------------------------------
Erasing the Greys Won't Lessen the Stress
July 21, 2011
As I let the Clairol hair color seep into my skull and hopefully hide my ga-zillion well-earned greys, I can’t help but think about this as a metaphor. (No I can never turn off my brain). What if it was this easy to erase the stress of raising our Super Hero? I’m not talking about the day-to-day stress about squelching meltdowns, sitting through dinner and getting to bed on schedule. I’m talking about long term anxiety that’s ALWAYS there, no matter how hard I try to bury it in the back of my mind or in the bottom of a wine glass.
Ask any parent of a kid blessed with Super powers, and there’s an underlying, constant burden about the future. Besides whether our kiddos will get a high school diploma, there’s the “What will my child become?” “Will he live independently?” “Will he be able to make and keep friends?” “What happens when we’re gone?” “Will there be girlfriends/boyfriends?”
Yes, I realize these are questions that every parent faces, with Autism it’s different. Appropriate jobs are scarce; there are waiting lists 10 years long for some group homes, and deciding on that perfect person to watch-over said kiddo if something unthinkable happens is a really TOUGH one. Independence is not assumed for all kids, especially spectrum kids. And the larger the academic gap between Super Heroes and typically developing kids grows, the more these burdens bubble my brain just below the surface.
After various conversations with teachers, therapists and parents, I actually felt like I was running out of time this week. Feelings of anxious nervousness came over me as I realized this is the grade standardized testing starts, square 3rd grade kids are crammed into perfect circular holes, and if they don’t fit they don’t graduate. WOW. That’s big. Really big. Am I okay with a certificate of completion at the age 21? I don’t know. Is that the best he can accomplish? I don’t know that either. But we do know we can’t give up on him yet.
Witnessing Jake working with a new tutor this afternoon nearly brought me to cheery-giggle tears. He was so excited about learning, he wanted to practice more “plussing” with Mr. N and then they cooked dinner together. He held a big boy pencil in his fingertips, sat at the desk and focused on math. Even though we’re taking full advantage of this latest brain burst, will it be enough? What is enough? Does a diploma guarantee happiness and success? Can he, (we) be happy without one?
We want more for our gorgeous hero and refuse to give up! So for now, we’ll keep tapping the minds of educators, doctors, psychologists, family members and friends to guide us along this difficult path. But as the hair color stained the bathroom floor and the golden brown blobs dot pink towels some stressors are just harder to get out.
Erasing the Greys Won't Lessen the Stress
July 21, 2011
As I let the Clairol hair color seep into my skull and hopefully hide my ga-zillion well-earned greys, I can’t help but think about this as a metaphor. (No I can never turn off my brain). What if it was this easy to erase the stress of raising our Super Hero? I’m not talking about the day-to-day stress about squelching meltdowns, sitting through dinner and getting to bed on schedule. I’m talking about long term anxiety that’s ALWAYS there, no matter how hard I try to bury it in the back of my mind or in the bottom of a wine glass.
Ask any parent of a kid blessed with Super powers, and there’s an underlying, constant burden about the future. Besides whether our kiddos will get a high school diploma, there’s the “What will my child become?” “Will he live independently?” “Will he be able to make and keep friends?” “What happens when we’re gone?” “Will there be girlfriends/boyfriends?”
Yes, I realize these are questions that every parent faces, with Autism it’s different. Appropriate jobs are scarce; there are waiting lists 10 years long for some group homes, and deciding on that perfect person to watch-over said kiddo if something unthinkable happens is a really TOUGH one. Independence is not assumed for all kids, especially spectrum kids. And the larger the academic gap between Super Heroes and typically developing kids grows, the more these burdens bubble my brain just below the surface.
After various conversations with teachers, therapists and parents, I actually felt like I was running out of time this week. Feelings of anxious nervousness came over me as I realized this is the grade standardized testing starts, square 3rd grade kids are crammed into perfect circular holes, and if they don’t fit they don’t graduate. WOW. That’s big. Really big. Am I okay with a certificate of completion at the age 21? I don’t know. Is that the best he can accomplish? I don’t know that either. But we do know we can’t give up on him yet.
Witnessing Jake working with a new tutor this afternoon nearly brought me to cheery-giggle tears. He was so excited about learning, he wanted to practice more “plussing” with Mr. N and then they cooked dinner together. He held a big boy pencil in his fingertips, sat at the desk and focused on math. Even though we’re taking full advantage of this latest brain burst, will it be enough? What is enough? Does a diploma guarantee happiness and success? Can he, (we) be happy without one?
We want more for our gorgeous hero and refuse to give up! So for now, we’ll keep tapping the minds of educators, doctors, psychologists, family members and friends to guide us along this difficult path. But as the hair color stained the bathroom floor and the golden brown blobs dot pink towels some stressors are just harder to get out.
-----------------------------------------------------
Prep, Panic and Predictability
June 16, 2011
The day started with thankful feelings that at least our Super Hero was able to quell his feelings of anxiety and get some rest. Not bad, considering the manner in which he went to bed! He gets so scared before transitions (end of school) that it literally consumes him, physically, emotionally and any logic goes out the window.
I came downstairs to find a bowl of ice cream and an overflowing bowl of Cinnamon Life cereal set in front of Jake’s seat at the table. As he heard me coming down the stairs he took cover in the basement.
Knowing that anything and I mean ANY THING will trigger a painful tantrum, I yelled “snack time” through the vent in the floor to lure him back upstairs giggling. He totally loves that!
The morning progressed rather wildly until I was able to dose him with his ‘calmer-downers’. We chilled enough to take a 2 mile bike ride around the neighborhood, eat a ridiculous breakfast, and prepare for the bus. At this point, I’m almost giddy that the morning has gone off without a hitch, and then the bus rolled up. A different bus, a different driver, a different aide and just one familiar face.
“Oh NNNNOOO it’s a DIFFERENT bus, where’s J-J-J-James?” panic settles in.
I had prepped him for a half-day of school, the last day of school, teachers and trusted para-educators talked to him about having a different classroom, but the bus, the bus, the bus. Ugh. Anxiety ratchets up and he hesitantly climbs up the bus stairs, runs past the new driver, the aide and found his usual seat next to another unfamiliar face. Poor guy.
When these transition times come around, there are days when no amount of prep work can help him cope. The schedules come back out, plans for every moment of the day are outlined and life has to progress according to “plan.”
During prayers tonight, Jake begged to get to “go back to Carl Sandburg in the morning after a bike ride in the dark?” Yep he’s planning early. 6am bike ride – then hang out at his now-closed school. It pains me to imagine the stress he’s feeling every time life changes the slightest bit.
He successfully made it through the strange morning in another teacher’s classroom and when I picked him up, he was actually happy. After opening all the car doors, backing up about 15 paces and eyeing the symmetry of the vehicle with doors ajar for 10 minutes, he hopped in to leave the beloved school.
“We’re only gone for 2 and a half weeks, right mom? We can go back in just a few days, right?”
“Yes, Jake, stay cool. A quick trip to Wisconsin to see family then back to school.” I try to redirect his fear with his favorite fish filet sandwich from McD’s. That lovely gesture is met with, “I can’t eat this it’s not warm enough in the middle. It’s been sitting in the car and got cold. The corner of cheese is pointy.” Really, really. ANY THING can trigger tantrum when life is unsettled.
“Fine Jake, have the fries.” OK… that worked.
Crisis avoided.
Driving home at my usual high rate of speed, I had to do a quick stop at a yellow light to avoid getting nailed by a semi entering the intersection. I hit the brakes without realizing that Jake was drinking and “voila!” water spills down the front of Jake’s shirt. That did it. The seatbelt gets ripped open, Jake peels off his shirt, refastens his belt and bursts into tears. Now he’s half-naked in the back seat with a puddle between his legs.
“Mom, you have to stop that jerky driving!” comes blaring from the back seat.
Sigh.
We managed to gather ourselves once home and thanks to an IPod break we ventured out for a couple errands. He met a friend of mine, tried rearranging his house to create some pleasing order to his eye, and then we found some Father’s Day goodies at Hallmark.
Cue the perfect storm, the store is packed, he is exhausted, music is playing, there are talking toys right near the doorway and he spots some candy at the counter. A kid was on the floor setting up plush toys and he tripped on her while diving for the sugary treats. After a stern, “no” from evil mommy, he’s at the door. I’m trapped at the counter trying to pay when the cashier recognizes me as her old flute teacher from 2003. She’s striking up a conversation while Jake is about to dart into the parking lot. GGGGggrrrrrrr.
I race to the door and homeward bound. He’s actually calm now so we do another mile on the bikes then work on writing some Thank You cards. 30 minutes = 4 cards and rising frustration on both sides of the pencil. He’s jamming the lead into his hands now and crying because he can’t erase the mark from his flesh.
Beep.
Just one and my head fell to the table as I think, 'are you kidding me'? Under the table I see a trembling Sam (dog) and Jake is up and running in circles with his fingers in his ears. “Are we having a fire alarm? Are we having a fire alarm? Do we need to go outside across the street?”
“No Jake, I’ll fix the smoke detector. The battery is just dying.”
Beep.
The second beep sends Jake to the floor in tears, Sam is trying to scratch his way through our storm door glass while screams of “fix it, fix it, mommy fix it NNNOOOWWW” echo through the house. I’m now in the garage, pulling a freakin’ 6’ wobbly wooden ladder down from the wall, man I love our vaulted ceilings.
I get Sam tied out on the run, I plop Jake in the chair on the porch with his IPod and strict orders not to budge an inch and scale the shaky ladder with knees knocking.
Beep.
GGGrrrrrrrr.
Done. Sweat pouring over my temples and short of breath.
“OK, Jake you can come back in.”
“Is the fire truck coming? I’ll go in but will only play in the basement,” he informs me while floating down the stairs effortlessly.
Now I head out to get Sam back in the house before the sky opens up. He’s still shaking at the end of the 20’ lead, I can see his trembling ears from the front door. I call him, I pull his lead, and he doesn’t budge. He’s coming nowhere near the house and is crying his eyes out too. That pathetic whimpering kills me.
Fine, stay out there and get wet. He did.
I hastily pulled 3 pink steaks (salmon) from the freezer, thawed them, and popped them in the oven. Asparagus was warmed in the mic, actually a little overcooked (crap) and dinner was ready in about 20 minutes. Another call through the vent lured a hungry super hero from the man-cave downstairs. He’s up and inhaling the salmon before I even sit down. I cut his pills, get us some water and sit down to an empty serving plate.
Jake actually saw the look on my face, stood up and keenly started to pull every slimy-floppy piece of asparagus out of the serving bowl with his juicy-fishy fingers. He put them on my plate with a, “here mommy you can have this stuff for supper.”
“How’s the salmon Jake?”
“It’s really good mommy.”
Sigh. Sigh.
Next he clears his plate and rinses it in the sink before I scarf down one slimy vegetable and announces he’s ready to work on his schedule for Friday. Opening the book, he writes, “6am bike ride in the dark” followed by “dog jog, breakfast, brush teeth and IPod play.” Hey, no school listed. hhhmmmm.
His sense of control in every situation is so critical this time of year. In his miraculous mind, there is no predictability to his days off of school and he cannot deal without a schedule. Venturing from the plan triggers complete panic in Jake and pain in us as parents. Jake has to learn coping life skills at every opportunity, no matter how painful. But to watch your child suffer, irrationally, without a tool in your box to fix it, is challenging but hopefully worth it. Trials like these need to be practiced in the safe arms with patient hearts.
This was just a half-day, the last day of school, the first day of a 2.5 week “vacation”.
Prep, Panic and Predictability
June 16, 2011
The day started with thankful feelings that at least our Super Hero was able to quell his feelings of anxiety and get some rest. Not bad, considering the manner in which he went to bed! He gets so scared before transitions (end of school) that it literally consumes him, physically, emotionally and any logic goes out the window.
I came downstairs to find a bowl of ice cream and an overflowing bowl of Cinnamon Life cereal set in front of Jake’s seat at the table. As he heard me coming down the stairs he took cover in the basement.
Knowing that anything and I mean ANY THING will trigger a painful tantrum, I yelled “snack time” through the vent in the floor to lure him back upstairs giggling. He totally loves that!
The morning progressed rather wildly until I was able to dose him with his ‘calmer-downers’. We chilled enough to take a 2 mile bike ride around the neighborhood, eat a ridiculous breakfast, and prepare for the bus. At this point, I’m almost giddy that the morning has gone off without a hitch, and then the bus rolled up. A different bus, a different driver, a different aide and just one familiar face.
“Oh NNNNOOO it’s a DIFFERENT bus, where’s J-J-J-James?” panic settles in.
I had prepped him for a half-day of school, the last day of school, teachers and trusted para-educators talked to him about having a different classroom, but the bus, the bus, the bus. Ugh. Anxiety ratchets up and he hesitantly climbs up the bus stairs, runs past the new driver, the aide and found his usual seat next to another unfamiliar face. Poor guy.
When these transition times come around, there are days when no amount of prep work can help him cope. The schedules come back out, plans for every moment of the day are outlined and life has to progress according to “plan.”
During prayers tonight, Jake begged to get to “go back to Carl Sandburg in the morning after a bike ride in the dark?” Yep he’s planning early. 6am bike ride – then hang out at his now-closed school. It pains me to imagine the stress he’s feeling every time life changes the slightest bit.
He successfully made it through the strange morning in another teacher’s classroom and when I picked him up, he was actually happy. After opening all the car doors, backing up about 15 paces and eyeing the symmetry of the vehicle with doors ajar for 10 minutes, he hopped in to leave the beloved school.
“We’re only gone for 2 and a half weeks, right mom? We can go back in just a few days, right?”
“Yes, Jake, stay cool. A quick trip to Wisconsin to see family then back to school.” I try to redirect his fear with his favorite fish filet sandwich from McD’s. That lovely gesture is met with, “I can’t eat this it’s not warm enough in the middle. It’s been sitting in the car and got cold. The corner of cheese is pointy.” Really, really. ANY THING can trigger tantrum when life is unsettled.
“Fine Jake, have the fries.” OK… that worked.
Crisis avoided.
Driving home at my usual high rate of speed, I had to do a quick stop at a yellow light to avoid getting nailed by a semi entering the intersection. I hit the brakes without realizing that Jake was drinking and “voila!” water spills down the front of Jake’s shirt. That did it. The seatbelt gets ripped open, Jake peels off his shirt, refastens his belt and bursts into tears. Now he’s half-naked in the back seat with a puddle between his legs.
“Mom, you have to stop that jerky driving!” comes blaring from the back seat.
Sigh.
We managed to gather ourselves once home and thanks to an IPod break we ventured out for a couple errands. He met a friend of mine, tried rearranging his house to create some pleasing order to his eye, and then we found some Father’s Day goodies at Hallmark.
Cue the perfect storm, the store is packed, he is exhausted, music is playing, there are talking toys right near the doorway and he spots some candy at the counter. A kid was on the floor setting up plush toys and he tripped on her while diving for the sugary treats. After a stern, “no” from evil mommy, he’s at the door. I’m trapped at the counter trying to pay when the cashier recognizes me as her old flute teacher from 2003. She’s striking up a conversation while Jake is about to dart into the parking lot. GGGGggrrrrrrr.
I race to the door and homeward bound. He’s actually calm now so we do another mile on the bikes then work on writing some Thank You cards. 30 minutes = 4 cards and rising frustration on both sides of the pencil. He’s jamming the lead into his hands now and crying because he can’t erase the mark from his flesh.
Beep.
Just one and my head fell to the table as I think, 'are you kidding me'? Under the table I see a trembling Sam (dog) and Jake is up and running in circles with his fingers in his ears. “Are we having a fire alarm? Are we having a fire alarm? Do we need to go outside across the street?”
“No Jake, I’ll fix the smoke detector. The battery is just dying.”
Beep.
The second beep sends Jake to the floor in tears, Sam is trying to scratch his way through our storm door glass while screams of “fix it, fix it, mommy fix it NNNOOOWWW” echo through the house. I’m now in the garage, pulling a freakin’ 6’ wobbly wooden ladder down from the wall, man I love our vaulted ceilings.
I get Sam tied out on the run, I plop Jake in the chair on the porch with his IPod and strict orders not to budge an inch and scale the shaky ladder with knees knocking.
Beep.
GGGrrrrrrrr.
Done. Sweat pouring over my temples and short of breath.
“OK, Jake you can come back in.”
“Is the fire truck coming? I’ll go in but will only play in the basement,” he informs me while floating down the stairs effortlessly.
Now I head out to get Sam back in the house before the sky opens up. He’s still shaking at the end of the 20’ lead, I can see his trembling ears from the front door. I call him, I pull his lead, and he doesn’t budge. He’s coming nowhere near the house and is crying his eyes out too. That pathetic whimpering kills me.
Fine, stay out there and get wet. He did.
I hastily pulled 3 pink steaks (salmon) from the freezer, thawed them, and popped them in the oven. Asparagus was warmed in the mic, actually a little overcooked (crap) and dinner was ready in about 20 minutes. Another call through the vent lured a hungry super hero from the man-cave downstairs. He’s up and inhaling the salmon before I even sit down. I cut his pills, get us some water and sit down to an empty serving plate.
Jake actually saw the look on my face, stood up and keenly started to pull every slimy-floppy piece of asparagus out of the serving bowl with his juicy-fishy fingers. He put them on my plate with a, “here mommy you can have this stuff for supper.”
“How’s the salmon Jake?”
“It’s really good mommy.”
Sigh. Sigh.
Next he clears his plate and rinses it in the sink before I scarf down one slimy vegetable and announces he’s ready to work on his schedule for Friday. Opening the book, he writes, “6am bike ride in the dark” followed by “dog jog, breakfast, brush teeth and IPod play.” Hey, no school listed. hhhmmmm.
His sense of control in every situation is so critical this time of year. In his miraculous mind, there is no predictability to his days off of school and he cannot deal without a schedule. Venturing from the plan triggers complete panic in Jake and pain in us as parents. Jake has to learn coping life skills at every opportunity, no matter how painful. But to watch your child suffer, irrationally, without a tool in your box to fix it, is challenging but hopefully worth it. Trials like these need to be practiced in the safe arms with patient hearts.
This was just a half-day, the last day of school, the first day of a 2.5 week “vacation”.
------------------------------------------
A New Mommy Tomorrow
April 14, 2011
Done. Ka-put. Over it. Mommy Gggggrrrrrr!!!!!!
So the afternoon started much better than it ended. Jake got off the bus in a great mood. Came in, had a snack and then hated the supper I made- per his request. Fine. Since he used his words to launch his protest and didn’t throw his food back at me, he can have an alternative: pile of lunch meat and celery instead of cheese filled raviolis and grated parmesan. Irritated, not mad. Not a battle I choose tonight.
Following supper, I pry the IPod from his hands after 2 minutes of play to get outside and enjoy the beautiful day. A nice dog walk complete with a stop at the playground to bat around the tether ball was great and uneventful. A short visit with the neighbors, and things started to get dicey as well as close to bedtime. I suggest a short scooter ride for Jake to burn off any last little bit of energy.
Moments after I give Jake “3 more times around the cul-de-sac,” warning, his friends roll up on their scooters. Seeing him so excited to play and scoot with friends, engaging, reciprocating, and typically teasing, I let my limit go. This will come back to haunt me. Have I not learned anything from the daring dances at bedtime the last three nights in a row?
Around and around the circle they go, chasing, tickling and running. Tick Tock, I know in my head he’s about to hit the wall, but still crave every moment of typical play as much as he does. Do I let him play knowing that a meltdown is imminent or bring him in just to stay on schedule? “Five more minutes,” I remind him while caving to the 3 more times rule. Prepping my brain for battle.
When the time came, he actually went inside nicely but plopped on the couch with muddy shoes on and IPod in hand. I follow, remind him to take his shoes off and give him 5 minutes with his game. “And we’re not going to fight, right mom?” he says, partly reminding himself of the rule while gauging my mood by the tone of my response. “That’s right buddy, or no IPod in the morning.” I know better than this threat because it’s too far away time-wise, and I’m not sure either of us will remember in the morning. Regretting that ever fell out of my mouth, I could kick myself.
“Two minutes…. one minute, okay buddy let’s head up!”
“Count down from 400,” he demands.
“Nope, it’s time.”
Jake now throws himself off the couch onto the hard floor and slams his knee. Here we go. Now there are tears and I’m so not having this drama before bed, AGAIN.
“My knee hurts!!!”
“Well, you probably could have just stood up instead of throwing your body onto the floor,” I manage to say very matter of factly.
“I want a new mom!”
“OK.”
And out the front door he goes. Stomping through the front yard in tears and tempting me to call the police. Our rule is, if he ever gets out of my sight, while storming from the house in a rage, I will call the cops. He knows it!! I walk to the door holding my cell phone and he’s on the porch in a quick minute.
“Now get up stairs and brush your teeth please.”
“Come with me.”
“Nope, you can do this on your own tonight. Mommy is very frustrated.”
Hysteria. Panic. Both visible on his face and in his voice.
“Mommy, you need to tuck me in!!!!!!!” He screeches while climbing the stairs backwards to be sure and
not take his eyes off me.
“Jake you need to act like a big 8-year-old and get into the bathroom.”
Now I’m totally kicking myself for even letting him have one last time around the circle. Was the payoff for bonding with neighbors worth it?
I go check on him in the bathroom and find the door locked, but hear the water running inside. Well he’s doing what I asked, I can’t be too mad. I jostle the door handle and he quickly opens it to reveal toothpaste everywhere, tears streaming down his face, and wet pants. Sigh.
Is this the price I pay for allowing him to stay up 4 minutes later than his bedtime really???
“Mom, tomorrow a new mom that’s nice will put me in bed, alright?”
“OK, that’s good, because I’m done fighting with you at bedtime.”
“Mom, will you be happy tomorrow?”
Now I’m holding his head in my hands, nose to nose, “buddy, my mood is depends on how well you listen! Jake doesn’t listen, I get crabby! Are you going to listen tomorrow?”
“Yes, will a new mommy be here?”
Sigh. Sigh.
As I leave his room, I hear a little voice buried under a pile of blankets... "I still love you right mom?", which translates to 'you still love me eventhough you're mad, right'?
So here I sit, still beating myself up, dreading the morning, and the fallout from tonight. We try so hard to shelter Jake from the most intense emotion, mostly because he stims on it, but is that really the best idea. He needs to know that people do get mad, and frustrated and have real – sometimes intense emotions. But the second we reveal this side to him, he’s interested and excited and victorious. So getting mad or showing that ‘real’ side shoots us in the foot while keeping cool doesn’t get the point across.
Sigh. Sigh. Sigh.
I’ve got to get to work on finding that new, shiny, smiley, unemotional, mommy for morning.
A New Mommy Tomorrow
April 14, 2011
Done. Ka-put. Over it. Mommy Gggggrrrrrr!!!!!!
So the afternoon started much better than it ended. Jake got off the bus in a great mood. Came in, had a snack and then hated the supper I made- per his request. Fine. Since he used his words to launch his protest and didn’t throw his food back at me, he can have an alternative: pile of lunch meat and celery instead of cheese filled raviolis and grated parmesan. Irritated, not mad. Not a battle I choose tonight.
Following supper, I pry the IPod from his hands after 2 minutes of play to get outside and enjoy the beautiful day. A nice dog walk complete with a stop at the playground to bat around the tether ball was great and uneventful. A short visit with the neighbors, and things started to get dicey as well as close to bedtime. I suggest a short scooter ride for Jake to burn off any last little bit of energy.
Moments after I give Jake “3 more times around the cul-de-sac,” warning, his friends roll up on their scooters. Seeing him so excited to play and scoot with friends, engaging, reciprocating, and typically teasing, I let my limit go. This will come back to haunt me. Have I not learned anything from the daring dances at bedtime the last three nights in a row?
Around and around the circle they go, chasing, tickling and running. Tick Tock, I know in my head he’s about to hit the wall, but still crave every moment of typical play as much as he does. Do I let him play knowing that a meltdown is imminent or bring him in just to stay on schedule? “Five more minutes,” I remind him while caving to the 3 more times rule. Prepping my brain for battle.
When the time came, he actually went inside nicely but plopped on the couch with muddy shoes on and IPod in hand. I follow, remind him to take his shoes off and give him 5 minutes with his game. “And we’re not going to fight, right mom?” he says, partly reminding himself of the rule while gauging my mood by the tone of my response. “That’s right buddy, or no IPod in the morning.” I know better than this threat because it’s too far away time-wise, and I’m not sure either of us will remember in the morning. Regretting that ever fell out of my mouth, I could kick myself.
“Two minutes…. one minute, okay buddy let’s head up!”
“Count down from 400,” he demands.
“Nope, it’s time.”
Jake now throws himself off the couch onto the hard floor and slams his knee. Here we go. Now there are tears and I’m so not having this drama before bed, AGAIN.
“My knee hurts!!!”
“Well, you probably could have just stood up instead of throwing your body onto the floor,” I manage to say very matter of factly.
“I want a new mom!”
“OK.”
And out the front door he goes. Stomping through the front yard in tears and tempting me to call the police. Our rule is, if he ever gets out of my sight, while storming from the house in a rage, I will call the cops. He knows it!! I walk to the door holding my cell phone and he’s on the porch in a quick minute.
“Now get up stairs and brush your teeth please.”
“Come with me.”
“Nope, you can do this on your own tonight. Mommy is very frustrated.”
Hysteria. Panic. Both visible on his face and in his voice.
“Mommy, you need to tuck me in!!!!!!!” He screeches while climbing the stairs backwards to be sure and
not take his eyes off me.
“Jake you need to act like a big 8-year-old and get into the bathroom.”
Now I’m totally kicking myself for even letting him have one last time around the circle. Was the payoff for bonding with neighbors worth it?
I go check on him in the bathroom and find the door locked, but hear the water running inside. Well he’s doing what I asked, I can’t be too mad. I jostle the door handle and he quickly opens it to reveal toothpaste everywhere, tears streaming down his face, and wet pants. Sigh.
Is this the price I pay for allowing him to stay up 4 minutes later than his bedtime really???
“Mom, tomorrow a new mom that’s nice will put me in bed, alright?”
“OK, that’s good, because I’m done fighting with you at bedtime.”
“Mom, will you be happy tomorrow?”
Now I’m holding his head in my hands, nose to nose, “buddy, my mood is depends on how well you listen! Jake doesn’t listen, I get crabby! Are you going to listen tomorrow?”
“Yes, will a new mommy be here?”
Sigh. Sigh.
As I leave his room, I hear a little voice buried under a pile of blankets... "I still love you right mom?", which translates to 'you still love me eventhough you're mad, right'?
So here I sit, still beating myself up, dreading the morning, and the fallout from tonight. We try so hard to shelter Jake from the most intense emotion, mostly because he stims on it, but is that really the best idea. He needs to know that people do get mad, and frustrated and have real – sometimes intense emotions. But the second we reveal this side to him, he’s interested and excited and victorious. So getting mad or showing that ‘real’ side shoots us in the foot while keeping cool doesn’t get the point across.
Sigh. Sigh. Sigh.
I’ve got to get to work on finding that new, shiny, smiley, unemotional, mommy for morning.
------------------------------------------------------
Is It Worth It?
April 4, 2011
So with the new week comes many a new dilemma. Movie Night: A typical kid activity for a not-so-typical kid.
I guess movie night is not the point, it’s that fact that it’s at ‘night’. We’ve NEVER been able to attend an ‘event in the dark time’ with Jake, due to his demanding sleep requirements. Jake works hard, plays hard, and runs hard therefore he sleeps hard!!! Another not-so-typical problem for a Super Hero with Autism. Most have the opposite sleep problems and stay up all hours of the night because their super brains never stop.
I cannot tell you how many other parents and friends have said:
“What do you do to Jake that he goes to bed so early?”
“Why don’t you just slide back his bedtime and he’ll sleep later in the morning?”
“How do you get him to sleep from 6:00pm-6:00am?”
#1: Jake falls asleep sitting at the table if it’s after 6pm. Literally! Honestly! Every time! Or has a massive meltdown. We do nothing TO him except fully enjoy every moment of life 120%. He's not allowed to veg-out/or disengage on the computer, hates TV, and doesn’t sit still, EVER.
#2: “Why don’t you just....” (my most hated phrase in the universe implies we haven’t tried and have no idea what’s going on!!!) Sliding his bed time back does nothing but ensure HELL tomorrow, an awful day at school, and likely total meltdown after school. We’ve been there, tried that, several times and it doesn’t work. He’s up at the same time every day, no matter what.
#3 We don’t do anything to ‘get him to go to bed early.’ He will tell us he’s ready when he’s ready and then he’s gone. It’s usually between 5:30pm-6:15pm, “I’m all done, can we go do a shower and book?” In fact, this weekend he put himself in bed at 5pm (fighting a cold) and I had to actually get him up, drag him physically down the stairs, to eat supper.
So, back to the point: is it worth it, forcing him to go to a night time movie at school when he’s begging me not to go? He knows all the friends that will be there. He knows they’ll be watching a funny movie and eating popcorn. It’s going to be mellow, sensory friendly and he knows we can leave at any time.
“I don’t want to go to a night time movie! I can’t stay awake and then be sssoooo tired for karate Saturday! It’s just too much. I want to play with friends one at a time, not at the movie.” His voice is shaking, escalating and he’s signing the ‘all done’ sign wildly as the freak out begins.
Now, I’m kicking myself for even mentioning, but I had to try. Panic will last all week (movie is Friday) to the point of distraction, perseveration and obsession. AARRGGHH !!!
We would love to actually take him to a night time event and have him enjoy it, but he’s just not capable. He’s got about 10 good, functional hours in a day. We understand all the benefits of ‘real life’ schedules, socializing and enjoying ‘typical’ activities and long for these experiences for him, but at what cost. Should we make him go, force him past his well-known and well-articulated limits? Is there a benefit to him falling out in front of his friends, biting-peeing-kicking-puking all over me while trying to get him home and to bed?
Maybe we just need to just listen, really listen to what Jake’s saying. For years, we’ve practiced, preached and prompted him to tell us about his feelings. Putting his thoughts into words is a massive task that’s taken years to accomplish. He knows he’s not ready for this type of activity at that time of day. It’s not avoidance or escapism. It’s Super Jake. Cut and dry. That’s it!
I need to work on the small part of myself that fears judgment from parents of other Super Hero kids. The looks, comments and eye rolls/head shakes will likely continue, but our focus is our awesome Super Hero, not what other people think. That challenge is ALL mine!
Is It Worth It?
April 4, 2011
So with the new week comes many a new dilemma. Movie Night: A typical kid activity for a not-so-typical kid.
I guess movie night is not the point, it’s that fact that it’s at ‘night’. We’ve NEVER been able to attend an ‘event in the dark time’ with Jake, due to his demanding sleep requirements. Jake works hard, plays hard, and runs hard therefore he sleeps hard!!! Another not-so-typical problem for a Super Hero with Autism. Most have the opposite sleep problems and stay up all hours of the night because their super brains never stop.
I cannot tell you how many other parents and friends have said:
“What do you do to Jake that he goes to bed so early?”
“Why don’t you just slide back his bedtime and he’ll sleep later in the morning?”
“How do you get him to sleep from 6:00pm-6:00am?”
#1: Jake falls asleep sitting at the table if it’s after 6pm. Literally! Honestly! Every time! Or has a massive meltdown. We do nothing TO him except fully enjoy every moment of life 120%. He's not allowed to veg-out/or disengage on the computer, hates TV, and doesn’t sit still, EVER.
#2: “Why don’t you just....” (my most hated phrase in the universe implies we haven’t tried and have no idea what’s going on!!!) Sliding his bed time back does nothing but ensure HELL tomorrow, an awful day at school, and likely total meltdown after school. We’ve been there, tried that, several times and it doesn’t work. He’s up at the same time every day, no matter what.
#3 We don’t do anything to ‘get him to go to bed early.’ He will tell us he’s ready when he’s ready and then he’s gone. It’s usually between 5:30pm-6:15pm, “I’m all done, can we go do a shower and book?” In fact, this weekend he put himself in bed at 5pm (fighting a cold) and I had to actually get him up, drag him physically down the stairs, to eat supper.
So, back to the point: is it worth it, forcing him to go to a night time movie at school when he’s begging me not to go? He knows all the friends that will be there. He knows they’ll be watching a funny movie and eating popcorn. It’s going to be mellow, sensory friendly and he knows we can leave at any time.
“I don’t want to go to a night time movie! I can’t stay awake and then be sssoooo tired for karate Saturday! It’s just too much. I want to play with friends one at a time, not at the movie.” His voice is shaking, escalating and he’s signing the ‘all done’ sign wildly as the freak out begins.
Now, I’m kicking myself for even mentioning, but I had to try. Panic will last all week (movie is Friday) to the point of distraction, perseveration and obsession. AARRGGHH !!!
We would love to actually take him to a night time event and have him enjoy it, but he’s just not capable. He’s got about 10 good, functional hours in a day. We understand all the benefits of ‘real life’ schedules, socializing and enjoying ‘typical’ activities and long for these experiences for him, but at what cost. Should we make him go, force him past his well-known and well-articulated limits? Is there a benefit to him falling out in front of his friends, biting-peeing-kicking-puking all over me while trying to get him home and to bed?
Maybe we just need to just listen, really listen to what Jake’s saying. For years, we’ve practiced, preached and prompted him to tell us about his feelings. Putting his thoughts into words is a massive task that’s taken years to accomplish. He knows he’s not ready for this type of activity at that time of day. It’s not avoidance or escapism. It’s Super Jake. Cut and dry. That’s it!
I need to work on the small part of myself that fears judgment from parents of other Super Hero kids. The looks, comments and eye rolls/head shakes will likely continue, but our focus is our awesome Super Hero, not what other people think. That challenge is ALL mine!