Discipline and Behavior (17)
Anxiety & autism
the problem with perfect
3.6.2021
Wow!
Way to go!
That's exactly right!
PERFECT!
These seem like everyday words we all use interchangeably. Doesn't seem like a big deal to most, especially when commending a job well done.
When you have a literal mind, filled with anxiety and complicated by rigidities, words matter... REALLY MATTER.
We are finding this out the hard way, as anxiety (in the midst of puberty emotions) has taken grip of Jake, once again. Yes, we are dealing with it through therapy and medicine changes of course... but there has been this little window of time between weaning one med and starting another, that's revealed some of the stresses Jake carries everyday.
He is now 18 and thriving at a residential school. However, his strive for perfection, because that is what has always been rewarded, is all consuming. Add the drive to be perfect, to fear of failing and complicated world view from autism & sensory issues, and you have quite a knot to untie. (I almost just wrote "perfect storm". See how easy it is?)
Jake goes all the way back to elementary school when first remembers feeling the need to be perfect. Sort of a no-brainer... when learning the alphabet, an A is an A and there's really now way around it. 2 + 2 is 4.. always, and that's the only right & perfect answer.
Behavior management tells us to reward the behavior we want to see... do we want to see perfect or do we want to see good effort? What is more important? Who decides?
The anxiety of point sheets or getting check marks on his day planner scared him so much that he forced himself to never make a mistake. I'm not even sure teachers realize that by using that language of "perfect" and "exactly right" it sets up expectation in an anxiety mind that... what happens if I'm not perfect next time?? I MUST be perfect all the time. Expectations from inside and outside are very hard.
We did it too, as parents! We didn't realize it, but the constant correction and judgement, was being internalized by Jake... and we were criticized and judged for being positive parents. (still are) We commended him for trying hard, giving good effort, but the method for success and approval had already been being formed in his brain... I must be perfect. I must be perfect. If the answer is not right, I'm a complete and utter failure as a person. Many autistic minds don't see the grey... it's black or white... pass or fail... perfect or bad.
Now, throw in a dash of anxiety. What happens if I'm not perfect? Will I be in trouble if I make a mistake? What will my report card look like, all wrong? Everything wrong? Will mom/dad not love me anymore if I'm not perfect?
See how dangerous of a word that is? It is setting up every child (and adult) to never be good enough. This is where we are with Jake right now. In his young mind of 18, he's already riddled with the fear that he may never be successful... in his mind successful=perfect. We are working feverishly to undo years of this inadvertent & expectant "programming" (for lack of a better word), to show him he is a beautiful human just for being Jake!
Reminding him he is exactly how God made him for his purpose, even if he gets an answer wrong there is an opportunity to grow, we will never leave him. Some days he will take that and accept that, others he says he'd rather be in heaven now because you get a "perfect heavenly body" when you go up. (again... see how easy it is).
I'm not saying everyone gets a trophy just for trying, that's not how the world works, but don't criticize parents for cheering good effort in any task, even if it's not done perfectly. Think about how and when you use that very big and powerful word.
Wow!
Way to go!
That's exactly right!
PERFECT!
These seem like everyday words we all use interchangeably. Doesn't seem like a big deal to most, especially when commending a job well done.
When you have a literal mind, filled with anxiety and complicated by rigidities, words matter... REALLY MATTER.
We are finding this out the hard way, as anxiety (in the midst of puberty emotions) has taken grip of Jake, once again. Yes, we are dealing with it through therapy and medicine changes of course... but there has been this little window of time between weaning one med and starting another, that's revealed some of the stresses Jake carries everyday.
He is now 18 and thriving at a residential school. However, his strive for perfection, because that is what has always been rewarded, is all consuming. Add the drive to be perfect, to fear of failing and complicated world view from autism & sensory issues, and you have quite a knot to untie. (I almost just wrote "perfect storm". See how easy it is?)
Jake goes all the way back to elementary school when first remembers feeling the need to be perfect. Sort of a no-brainer... when learning the alphabet, an A is an A and there's really now way around it. 2 + 2 is 4.. always, and that's the only right & perfect answer.
Behavior management tells us to reward the behavior we want to see... do we want to see perfect or do we want to see good effort? What is more important? Who decides?
The anxiety of point sheets or getting check marks on his day planner scared him so much that he forced himself to never make a mistake. I'm not even sure teachers realize that by using that language of "perfect" and "exactly right" it sets up expectation in an anxiety mind that... what happens if I'm not perfect next time?? I MUST be perfect all the time. Expectations from inside and outside are very hard.
We did it too, as parents! We didn't realize it, but the constant correction and judgement, was being internalized by Jake... and we were criticized and judged for being positive parents. (still are) We commended him for trying hard, giving good effort, but the method for success and approval had already been being formed in his brain... I must be perfect. I must be perfect. If the answer is not right, I'm a complete and utter failure as a person. Many autistic minds don't see the grey... it's black or white... pass or fail... perfect or bad.
Now, throw in a dash of anxiety. What happens if I'm not perfect? Will I be in trouble if I make a mistake? What will my report card look like, all wrong? Everything wrong? Will mom/dad not love me anymore if I'm not perfect?
See how dangerous of a word that is? It is setting up every child (and adult) to never be good enough. This is where we are with Jake right now. In his young mind of 18, he's already riddled with the fear that he may never be successful... in his mind successful=perfect. We are working feverishly to undo years of this inadvertent & expectant "programming" (for lack of a better word), to show him he is a beautiful human just for being Jake!
Reminding him he is exactly how God made him for his purpose, even if he gets an answer wrong there is an opportunity to grow, we will never leave him. Some days he will take that and accept that, others he says he'd rather be in heaven now because you get a "perfect heavenly body" when you go up. (again... see how easy it is).
I'm not saying everyone gets a trophy just for trying, that's not how the world works, but don't criticize parents for cheering good effort in any task, even if it's not done perfectly. Think about how and when you use that very big and powerful word.
Anxiety of social settings
9.22.18
We had the honor to attend a friend's wedding celebration this afternoon. A lovely vineyard in Virginia, rolling hills, nearby horse farms, grapes dropping off the vines, a pond and perfect weather! I was excited as we drove there, thinking this is going to be great because it's outside and Jake can run if he needs to have a break, we can leave if we need to and hey no one knows me. His anxiety started building on the way there... so I encouraged him to block out all stimulation and sleep. Classical music and his eye mask were donned.
As we approached the tent, Jake quickly scanned the scene (in about 3 seconds. it's his gift) and asked to go to the lake, which was about 200 yards away. We recited the things we need to do before a break: "say congratulations, get food, go pee, take a break." He recited them quietly and headed to the buffet. He piled two giant plates full of food and started breathing quickly, as he couldn't see a table that was an acceptable distance from the group.
We spotted one under a tree, removed from the party a bit, and he settled there. He did fine eating but then continued eyeing that lake, waaaaaaay down there! I started pointing out other things to look at, as I knew it would be mere seconds before he spotted the table just across from us. A table of 4 beautiful teenage girls. All in sun dresses and sandals. He instantly started scanning their shoes and feet and holy moly 40 PAINTED TOES!
Up he goes... I told him to go run. He headed down the hill to the lake and was better. I stayed to eat and remove attention, then headed down after I finished. He had now wandered around the lake to find a little nook where his view was blocked from the party. He plopped down in the grass and I could literally see his heart beating out of his chest from about 50' away.
We tried to rest for a bit, but others started coming down to the lake. Adults, girls, little kids.... This pushed him over the top. I told him to run all the way to the car. He could wait for me there. He did. Dashed right up past the party and found the car about 100 yards ahead of me. I wanted to grab a couple photos with friends, so I did. He waited and was safe.
Now this may not seem like a very much fun, but this is our life. We've adapted. We learned. When I say every minute is managed, it's completely literal. Every move has to be planned, consequences weighed and outcome behaviors predicted. It's just what we do. To the outside eye, it looks tiring. It is, but it is our IS. Jake is as difficult as he is amazing. There's a reason he's enrolled in the school with the most intensive supports in the state. You don't just go there bc you have a hard time... you win enrollment because of your multiple disabilities that impede your ability to enjoy life.
We will likely never stop helping Jake try these new experiences. We refuse to allow him to be a recluse, though he'd be perfectly happy doing so. We do and will continue to push him to the limit, until we see signs of danger. It's very likely I have PTSD from this, and some of his aggressive outbursts, but we must continue to grow. Love will win in the end. God will keep us close. We will persevere.
I'm so proud of Jake for using every one of his strategies to have safe this afternoon. I knew it would be hard for him. It was. At home, his behaviors heightened a bit but I was ready for the melt. Once calm, we processed through his fears. We grew more. We learned more. I call this success! Give me MORE!
Here's a little recap of the event in a chart form so MAYBE it will help another parent.
My perception Oh what a nice small group!
Jake perception/antecedent Holy crap that’s alotta people in that tent!
Jake Behavior Get food, lots of it
My reaction/consequence We eat
My perception A nice table, outside the tent, under the tree will be great.
Jake perception/antecedent This table is too close to the tent.
Jake Behavior Inhaling food so fast
My reaction/consequence Ignore and hand him napkins silently
My perception A table with 4 teens. I wonder which one is E’s daughter?
Jake perception/antecedent Oh Maaaaaan those girls are close!!! They have on sandals and painted toes.
Jake Behavior Bouncing up and down in seat… and running to the open field for “space” to get away.
My reaction/consequence Let him run
My perception Jake running in circles down by the lake… he looks like he’s had a bottle of wine!
Jake perception/antecedent I can still see the party I want to run into the woods. Those girls are too close.
Jake Behavior Running and thrashing about in the grass
My reaction/consequence We go around the lake and find a notch in the woods to decompress
My perception Quiet and Calm, I think we can head up to the rejoin the party.
Jake perception/antecedent My stomach is jittery and my heart is still racing. I’m trying to breath. I look at the party. There’s too many people. Oh no they are coming closer.
Jake Behavior Running around in circles screaming and singing.
My reaction/consequence Lead him to the car while withdrawing all attention and reactions.
My perception I hate to leave now, I didn’t get to chat with anyone
Jake perception/antecedent We’ve been here way too long and there’s PRETTY GIRLS!!
Jake Behavior Running all the way up the hill to the car.
My reaction/consequence Stop to take a picture with friends, let him calm down at the car.
Hope this helps. Enjoy these photos too!
We had the honor to attend a friend's wedding celebration this afternoon. A lovely vineyard in Virginia, rolling hills, nearby horse farms, grapes dropping off the vines, a pond and perfect weather! I was excited as we drove there, thinking this is going to be great because it's outside and Jake can run if he needs to have a break, we can leave if we need to and hey no one knows me. His anxiety started building on the way there... so I encouraged him to block out all stimulation and sleep. Classical music and his eye mask were donned.
As we approached the tent, Jake quickly scanned the scene (in about 3 seconds. it's his gift) and asked to go to the lake, which was about 200 yards away. We recited the things we need to do before a break: "say congratulations, get food, go pee, take a break." He recited them quietly and headed to the buffet. He piled two giant plates full of food and started breathing quickly, as he couldn't see a table that was an acceptable distance from the group.
We spotted one under a tree, removed from the party a bit, and he settled there. He did fine eating but then continued eyeing that lake, waaaaaaay down there! I started pointing out other things to look at, as I knew it would be mere seconds before he spotted the table just across from us. A table of 4 beautiful teenage girls. All in sun dresses and sandals. He instantly started scanning their shoes and feet and holy moly 40 PAINTED TOES!
Up he goes... I told him to go run. He headed down the hill to the lake and was better. I stayed to eat and remove attention, then headed down after I finished. He had now wandered around the lake to find a little nook where his view was blocked from the party. He plopped down in the grass and I could literally see his heart beating out of his chest from about 50' away.
We tried to rest for a bit, but others started coming down to the lake. Adults, girls, little kids.... This pushed him over the top. I told him to run all the way to the car. He could wait for me there. He did. Dashed right up past the party and found the car about 100 yards ahead of me. I wanted to grab a couple photos with friends, so I did. He waited and was safe.
Now this may not seem like a very much fun, but this is our life. We've adapted. We learned. When I say every minute is managed, it's completely literal. Every move has to be planned, consequences weighed and outcome behaviors predicted. It's just what we do. To the outside eye, it looks tiring. It is, but it is our IS. Jake is as difficult as he is amazing. There's a reason he's enrolled in the school with the most intensive supports in the state. You don't just go there bc you have a hard time... you win enrollment because of your multiple disabilities that impede your ability to enjoy life.
We will likely never stop helping Jake try these new experiences. We refuse to allow him to be a recluse, though he'd be perfectly happy doing so. We do and will continue to push him to the limit, until we see signs of danger. It's very likely I have PTSD from this, and some of his aggressive outbursts, but we must continue to grow. Love will win in the end. God will keep us close. We will persevere.
I'm so proud of Jake for using every one of his strategies to have safe this afternoon. I knew it would be hard for him. It was. At home, his behaviors heightened a bit but I was ready for the melt. Once calm, we processed through his fears. We grew more. We learned more. I call this success! Give me MORE!
Here's a little recap of the event in a chart form so MAYBE it will help another parent.
My perception Oh what a nice small group!
Jake perception/antecedent Holy crap that’s alotta people in that tent!
Jake Behavior Get food, lots of it
My reaction/consequence We eat
My perception A nice table, outside the tent, under the tree will be great.
Jake perception/antecedent This table is too close to the tent.
Jake Behavior Inhaling food so fast
My reaction/consequence Ignore and hand him napkins silently
My perception A table with 4 teens. I wonder which one is E’s daughter?
Jake perception/antecedent Oh Maaaaaan those girls are close!!! They have on sandals and painted toes.
Jake Behavior Bouncing up and down in seat… and running to the open field for “space” to get away.
My reaction/consequence Let him run
My perception Jake running in circles down by the lake… he looks like he’s had a bottle of wine!
Jake perception/antecedent I can still see the party I want to run into the woods. Those girls are too close.
Jake Behavior Running and thrashing about in the grass
My reaction/consequence We go around the lake and find a notch in the woods to decompress
My perception Quiet and Calm, I think we can head up to the rejoin the party.
Jake perception/antecedent My stomach is jittery and my heart is still racing. I’m trying to breath. I look at the party. There’s too many people. Oh no they are coming closer.
Jake Behavior Running around in circles screaming and singing.
My reaction/consequence Lead him to the car while withdrawing all attention and reactions.
My perception I hate to leave now, I didn’t get to chat with anyone
Jake perception/antecedent We’ve been here way too long and there’s PRETTY GIRLS!!
Jake Behavior Running all the way up the hill to the car.
My reaction/consequence Stop to take a picture with friends, let him calm down at the car.
Hope this helps. Enjoy these photos too!
When the Trigger Trips, Look Beyond
As I sit to write, the man-child is shopping online for computer parts… he has a brand new computer. But he is calm and safe and it’s ok. I have his and Chris’ permission to write this story and share it, in hopes of helping other parents better understand their kids.
I just want to relax; this week took a huge emotional toll on my little brain and tired body. Daily questions.
At 15 years old, exactly “who” will emerge from the stinky, dingy bedroom each morning is always a crapshoot. Will it be “mature Jake” who can conjure up a civil “hello or Good morning”? Or will Jake of the “dark side” approach me, looking for an argument or some reason to complain and push my buttons.
All parents experience the ebbs and flows of puberty and developing young adults, but it takes a warrior to survive the tormented seas of a teen with Autism.
Monday, Jake had a rough day at school. I’ll spare you ALL the details, but the highlights include elopement towards a busy highway, unwanted contact, pulling the fire alarm and time in the “resource” room at school. It’s the first time ever and boy he did it up right. He was so angry, scared and frustrated he screamed threats, urinated around the room and then kicked the concrete wall…. Hard.
Trigger: unexpected negative or corrective feedback
Hello urgent care, oh really his big toe is broken? Split down the middle you say? Off his bike and exercise for 5 weeks, really? Not surprised. Just pissed and exhausted.
This kiddo just cannot gain control of his body once that trigger is tripped. Sometimes it’s screaming, giant holes in the wall of his room, elopement or aggression. Name it, he's done it.
He is afraid of himself when he’s “on the dark side” and I am constantly on guard. These are the moments that Autism Moms are compared to combat soldiers… because every minute of every day we have to be prepared for battle, physical, emotional and psychological. The reason I kick-box, I must stay stronger and smarter than him.
I’ve written before about Jake’s intolerance for his body not functioning as it is “supposed to”. Remember, he took 26 pills a month ago (motrin and melatonin are the only pills not locked up) to try and remedy that new feeling after his knee surgery.
Well… now it’s Tuesday, the next day. Jake enters my room at 5am and asks for his “big Motrin” (600’s) from the Urgent Care while we await his ortho appointment that afternoon.
I told him he needed to have cereal first to coat his stomach for the big Motrin. (Unexpected and unwanted feedback). He limped downstairs as I rolled over thinking he’s going to make cereal and milk. He’s quiet. Too quiet. I don’t hear the pantry or fridge, but surely he’s going to eat because his foot really hurts.
Should I check on him? No, I trust he’s eating. What else could he do, all sharps, meds and harmful items are in padlocked boxes?
He emerges and puts a note on my nightstand. It’s a habit we’ve started recently, he purges his feelings at end of the day and I leave affirming responses for him in the morning. As he puts the note down he says, “Umma when you are ready to discuss this calmy, come into my room.”
I look at the note, which starts with, “I’m sorry I think I made a wrong decision. I just broke into the medicine box and took 15 motrin. My foot hurts.” I couldn’t tell you the rest of the page-long message it didn’t matter.
This Warrior Umma flew out of bed to his room like a wild tornado, knowing the whole time calm is the key to communication.
Calm? Far from it…
Composed? Not even close…
Scared? Hell Yes!
"How did you do this?" in a controlled shriek.
“I broke the padlock with my bare hands! I’m so strong,” he boasted proudly.
Hello Poison Control… my son just took 15 Motrin, oh he’ll have to be monitored for 6 hours in the hospital? OK… off we go. Tears of fear stream down my cheeks as I try to find the hospital, which is literally 2 miles from my house. Reliving this feeling years back… when he bashed the school windows with his hands.
Emergency rooms suck but this time we actually got in quickly. I furiously texted Chris, Team Jake to fill them in.
He’s listed as an OD, again, and put in a room reserved for some pretty dangerous and impulsive folks.
Nothing there. A bed. A mounted TV. A crappy chair. A cot. Bathroom around the corner doesn’t even have a towel dispenser. Just toilets with no cover or seat, no toilet tissue dispenser and a sink.
The room came with an armed guard in the small 3' hallway between our room and the one next door where a guy kept screaming the F word among other lovely things. I think he was a gunshot victim. Jake asked if that guy is "a criminal".
The doctor entered and asked Jake if he was trying to commit suicide. He didn’t understand.
The doctor rephrased, “kill yourself, end your life, harm yourself?”
With every alternative, I felt a stabbing pain in my heart and the sting of tears filling my eyes.
The air leaves my chest.
I’ve been shielding Jake from this option until now. Gasp.
Now he knows and has more information than we ever wanted.
A cool nurse came in to get blood from Jake and then bonded instantly. He was there forever, as Jake was so scared, his fist was clinched too tight, those veins were not cooperating.
While waiting for blood results we both had to undergo a barrage of questions from the psychiatry department social worker. Is this real life? Can this be happening? My mind races.
Will he stay in his room alone?
Will he answer the questions appropriately and honestly?
We are in separate rooms.
While I’m being questioned the armed security guard sits with Jake to watch ESPN. Staff is nervous to leave him alone, as am I. Jake thinks it's cool to be "protected and safe."
Jake tells the social worker that if he took all the pills he “would have a new heavenly body that wouldn’t hurt… his stress about girls would go away too because there’s no stress in heaven. He’d see Sammy (our dog), Cinder (his therapeutic horse) and Gramma Bubbette!”
Black – White thinking is not new.
Here’s me trying to explain that Jake doesn’t realize the finality of his actions and assured the social worker he was not trying to kill/harm himself. She is sweet but I’m not sure if she believed me. I explained how our house is very controlled, every minute of his life managed, but somehow he escaped me and broke open the lock box to get to medicine.
Ugh.
Jake has the highest confidence level of any kid I know. Annoyingly so, at times.
He’s applauded and saluted as he enters rooms, respected by police and law enforcement, can hold the attention of several hundred adults, signs autographs and the walls of the house are adorned with citations and accolades from government, local and national.
Yet, here we are, talking suicide, thinking prevention out of desperation.
The biggest trigger for any parent; ending it all.
I cannot answer his questions calmly, there’s too much emotion connected to this topic. Finding appropriate answers to his life-ending questions is impossible as I listen, I realize exactly how “young” his understanding of this topic, really is.
We are now spending Mother’s Day shopping for cabinets or safes stronger than we were using. Jake wants double locks, keypads and special handle. He’s begging for ways to “feel safe”.
"This one is 2.5 cubic feet with a camera and keypad. That's neat!"
Through the actions of this week, he is telling us much more than the obvious. We have to look beyond. It’s not about what it appears.
"This one could stand in the corner with double steel. That'll keep me out!" he interjects excitedly.
Jake is feeling out of control. He is asking for help through his behavior. His body is changing and feels different every day. He is not ready for independence. He is striving for something, anything he can control.
All previous behavior management techniques at school and home are now reinstated. New IEP next week. We’ve regressed behaviorally (and academically). We are doubling-down on predictability, schedules, clear expectations with black/white consequences. Every response to every statement or behavior is measured and predictable.
"Do you think a keypad is better than a key lock?"
For Jake: No surprises. No expectations. Nothing new. Reinforcement sky-high.
For us: More prayers. More planning. More transparency. Stay positive. Never lose sight of Jake. More hugs.
Send good thoughts our way, I seriously earned this Mother’s Day!
Dichotomy of Autism
November 2017
I guess they call them "splinter skills". I call them mind-blowing.
In a 4-day weekend (not over yet) we’ve experienced the gamut of skills and emotions about 30 times over. When "they" say raising a child on the spectrum is a roller coaster ride, "they" aren’t kidding. I get nauseous and exhausted at theme parks too!
I began writing this article in my head while I watched Jake's excitement to see Santa Claus. Lined up with children of all ages, he jumped up and down and nervously recited his list to tell Santa. He ran up the ramp, plopped his 6' tall lanky teenage body on ole Saint Nich's little knee, gave him a firm eye-contact handshake, and started speaking to him as if they'd known each other for years.
I started to get emotional and teary while watching him, not because of Santa, but because of Jake's child-like beliefs and innocence inside this grown-man-body. His sweet trust and zest for life while being scared to death most of the time.
As I tried to compose myself to take photos, it dawned on me that just 12 hours prior we tweaked, polished and rehearsed a speech that he'd deliver to 300 Law Enforcement and Juvenile Crime experts in just two days. I found myself shaking my head, crying and chuckling at the same time. I could barely keep my emotions all together, but he flows from Santa to Stage with the ease of a well-rehearsed professional.
Then I started recalling the rest of the weekend; yesterday started in a blaze of glory which led to a "morning reset" after his bagel accidentally flipped off his plate and touched my hand. (Mind you, I just held the bagel to cut it.) He freaked out! I told him not to throw it away, but he just couldn’t recover from this unexpected event. He tried so hard to deal for about 2 minutes, but was physically shaking and hyper-ventilating at the thought of eating this bagel. He snuck behind me, pitched it into the trash and I got pissed.
Once in his room, he began carving naughty words into his dresser with a dull pencil. "I never get what I want..."
The worst of it... “a really bad word that starts with SH..." can you guess? Keep thinking, I'll reveal the "worst ever bad word" at the end.
Thanksgiving Thursday, he managed to deal with a few curve balls in scheduling but wasn't thrilled. His anxiety, from his inability to control the change in schedule, bubbled up and dominated the entire brunch with talk of jails, hospitals and mental processing issues. Moments after eating Thanksgiving brunch (not lunch), I asked him to help me make 25 sandwiches. I knew I was totally pushing my luck at this point, expected a behavior, but was pleasantly surprised. With very simple instructions and a demo, he focused and performed beautifully. He even made veggie bags after the sandwiches and worked for about 45 minutes! Success after strain, woo hoo!
Now the hard part! He was really tired emotionally from dealing with the morning stress, but we needed to deliver the food we just prepared. I let him snooze on the way downtown and hoped he recovered! He approached about a dozen different homeless friends and offered them the sandwiches then wished them "Happy Thanksgiving" to boot.
How on Earth does this happen? It's like there's a switch in his brain. He can hold it together for "so long" then needs his rest and routine back in order to recover.
Earlier in the week, the child that can never stop moving was able to undergo a 45 minute M-R-I without sedation!! I think I was more nervous than he was!
We just left the barber where Jake requested a mature and cool haircut for his big speech. After he finished his supper, he started sliding across the kitchen floor on his butt! When asked what he's doing, "sliding across the floor on my butt. hahahahahah! See!?!?!?!?!"
How can he sit down and write a 10-page speech but struggle to read and understand his homework, which is a ways below grade level?
He can build any puzzle, model car or design trains without instructions, but cannot follow 2-step directions. He can recreate elevators, landmarks and maps from photographic memory but requires "touch math" or calculators for addition and subtraction. I love his brain!
Jake cannot function or learn in a classroom if a student is breathing (audibly) near him. His attention is pulled if someone walks past his open door, his desk is moved an inch, he hears a sneeze/cough from the room next door or if another student is upset, but he can get in front of crowds of thousands of people and deliver a speech without fear. People have called out to him while he is speaking and he can ignore and charge on. I've seen him pose for photos with complete strangers putting their arms around him, but he freaks out if he gets a text or phone call at an unexpected time.
This man-child who safely rides his bicycle at speeds faster than neighborhood speed limits, must have all blankets and stuffed toys arranged on his bed perfectly before retiring for the night, including Flashlight Friends, Smiling Pile of Pooh and Taggies.
Jake with his amazing brain, is saving lives while struggling through so many aspects of his own!
Most of our spectrum buddies have brilliant, hidden skills amongst the challenges of everyday life too. That's where loved ones are charged with figuring out how to turn those skills into practical and purposeful tools for success.
Fulfilling and satisfying lives are possible.
Oh, the "worse ever bad word that starts with S-H".... he cannot even bring himself to say... S-H-O-P-L-I-F-T!
I guess they call them "splinter skills". I call them mind-blowing.
In a 4-day weekend (not over yet) we’ve experienced the gamut of skills and emotions about 30 times over. When "they" say raising a child on the spectrum is a roller coaster ride, "they" aren’t kidding. I get nauseous and exhausted at theme parks too!
I began writing this article in my head while I watched Jake's excitement to see Santa Claus. Lined up with children of all ages, he jumped up and down and nervously recited his list to tell Santa. He ran up the ramp, plopped his 6' tall lanky teenage body on ole Saint Nich's little knee, gave him a firm eye-contact handshake, and started speaking to him as if they'd known each other for years.
I started to get emotional and teary while watching him, not because of Santa, but because of Jake's child-like beliefs and innocence inside this grown-man-body. His sweet trust and zest for life while being scared to death most of the time.
As I tried to compose myself to take photos, it dawned on me that just 12 hours prior we tweaked, polished and rehearsed a speech that he'd deliver to 300 Law Enforcement and Juvenile Crime experts in just two days. I found myself shaking my head, crying and chuckling at the same time. I could barely keep my emotions all together, but he flows from Santa to Stage with the ease of a well-rehearsed professional.
Then I started recalling the rest of the weekend; yesterday started in a blaze of glory which led to a "morning reset" after his bagel accidentally flipped off his plate and touched my hand. (Mind you, I just held the bagel to cut it.) He freaked out! I told him not to throw it away, but he just couldn’t recover from this unexpected event. He tried so hard to deal for about 2 minutes, but was physically shaking and hyper-ventilating at the thought of eating this bagel. He snuck behind me, pitched it into the trash and I got pissed.
Once in his room, he began carving naughty words into his dresser with a dull pencil. "I never get what I want..."
The worst of it... “a really bad word that starts with SH..." can you guess? Keep thinking, I'll reveal the "worst ever bad word" at the end.
Thanksgiving Thursday, he managed to deal with a few curve balls in scheduling but wasn't thrilled. His anxiety, from his inability to control the change in schedule, bubbled up and dominated the entire brunch with talk of jails, hospitals and mental processing issues. Moments after eating Thanksgiving brunch (not lunch), I asked him to help me make 25 sandwiches. I knew I was totally pushing my luck at this point, expected a behavior, but was pleasantly surprised. With very simple instructions and a demo, he focused and performed beautifully. He even made veggie bags after the sandwiches and worked for about 45 minutes! Success after strain, woo hoo!
Now the hard part! He was really tired emotionally from dealing with the morning stress, but we needed to deliver the food we just prepared. I let him snooze on the way downtown and hoped he recovered! He approached about a dozen different homeless friends and offered them the sandwiches then wished them "Happy Thanksgiving" to boot.
How on Earth does this happen? It's like there's a switch in his brain. He can hold it together for "so long" then needs his rest and routine back in order to recover.
Earlier in the week, the child that can never stop moving was able to undergo a 45 minute M-R-I without sedation!! I think I was more nervous than he was!
We just left the barber where Jake requested a mature and cool haircut for his big speech. After he finished his supper, he started sliding across the kitchen floor on his butt! When asked what he's doing, "sliding across the floor on my butt. hahahahahah! See!?!?!?!?!"
How can he sit down and write a 10-page speech but struggle to read and understand his homework, which is a ways below grade level?
He can build any puzzle, model car or design trains without instructions, but cannot follow 2-step directions. He can recreate elevators, landmarks and maps from photographic memory but requires "touch math" or calculators for addition and subtraction. I love his brain!
Jake cannot function or learn in a classroom if a student is breathing (audibly) near him. His attention is pulled if someone walks past his open door, his desk is moved an inch, he hears a sneeze/cough from the room next door or if another student is upset, but he can get in front of crowds of thousands of people and deliver a speech without fear. People have called out to him while he is speaking and he can ignore and charge on. I've seen him pose for photos with complete strangers putting their arms around him, but he freaks out if he gets a text or phone call at an unexpected time.
This man-child who safely rides his bicycle at speeds faster than neighborhood speed limits, must have all blankets and stuffed toys arranged on his bed perfectly before retiring for the night, including Flashlight Friends, Smiling Pile of Pooh and Taggies.
Jake with his amazing brain, is saving lives while struggling through so many aspects of his own!
Most of our spectrum buddies have brilliant, hidden skills amongst the challenges of everyday life too. That's where loved ones are charged with figuring out how to turn those skills into practical and purposeful tools for success.
Fulfilling and satisfying lives are possible.
Oh, the "worse ever bad word that starts with S-H".... he cannot even bring himself to say... S-H-O-P-L-I-F-T!
Typical Discipline for Atypical Kiddos
June 20, 2014
Listen.
Can you hear it?
Not my stomach digesting... not the hum of the dishwasher... not the dog scratching at the door.
Nothing.
The house is quiet now.
A short while ago, there was a screaming fight going on in my brain, as well as glares and stern words across the kitchen table.
I had made dinner for all of us, but while I was preparing we warned Jake that when I said it was time to eat, it’s time to eat. No arguing, no whining and no acting like “Jerky Jake” (his alter-ego he blames everything on when he does not get his way or is getting in trouble.)
10 minute warning.
5 minute warning.
“Come and get it! Mommy’s café is serving steak and veggies. AKA: flank steak au-Jus with roasted Dijon cauliflower, pickled baby turnips and watercress! I spent an hour preparing so he had all that time to play.
He was playing with Chris, trying to make the most of this last day of daddy-vacation, so he promptly reminded Jake of the plan to “go to the table when mommy calls.” There’s nothing I hate worse than making a big meal, which I am still insecure about my cooking, and having it sit on the table chilling while he lollygags around trying to think of an appropriate task-avoiding behavior.
Again daddy prompts, “Mmmm this is so good I’m going to eat now, I can’t wait.” Jake is still sitting at the computer. He then starts making his irritating faces and groaning. (yay typical bx – boo I’m over it)
He meanders past the table as Chris and I are about to dig in then darts to wash-up in the bathroom before eating. (that was a direction he actually followed!)
From the bathroom comes a string of profanity. Jake is on the downhill slide to meltdown. The “F” word sneaks out under the door along with “stupid, mommy, more F word" and assorted others.
I’m trying really hard to ignore, but this is totally pissing me off. He’s been enjoying all these new meals I’m cooking and normally begs me to open “mommy’s diner” for meals, but tonight he’s just done with life.
We came off a huge week of no school routine, an amusement park trip, exciting house guests, the big indoor pool, metro rides, horse lessons, etc etc… He did really well all week, so I think we got comfortable. We relaxed, he can’t and the release is never pretty. He needs the routine even-though he’s begging to try new experiences.
We sat down to eat, he stabbed a few pieces of steak and continued snarling and scoffing. While aiming my fork at him in the air I snapped back, “This person is not welcome at my table, Jake.”
Shit! Oh man, I just lit the fuse.
Breathe. Stay calm. In a low voice...
“Jerky Jake was not invited to dinner and I want my Jake back. Now eat your food. If you make another face or bad comment you will go to your room without mommy and daddy. If you put your hands on me, the police will be called. And if you don’t believe it, TRY ME!”
His shocked face about sliced my heart in half… against the muscle grain, just like the steak he was devouring. I could not believe I said it, but it had been building and Chris backed me up. We try to always focus on the positive and keep everything upbeat, but there are days and none of us are super human. He needs to see real anger and build skills to deal with it.
“It’s hard sometimes to be Jake,” he said. “I just can’t help it.”
“You can stop yourself from being mean, Jake.”
I just looked down and continued eating, praying there would not be another word uttered from the cherubic face across the table from me. Please don’t say another thing or we will have to follow through with my snarly threat.
Suddenly, Chris says, “Goodnight Jake. You. Are. Done. Not another word. I saw the eye-roll and look you just gave your mother, you need to respect her. You are now going to bed.”
Damn.
What just happened?
Go Chris!!
“Good night Jake.”
He got up, left a half-full plate of food, and walked (not stomped) off to his room. He was completely stunned. Really, stunned.
It was totally quiet as he went upstairs.
Before he made it to the landing, Chris and I had split up his plate of food.
We discussed if we took the right action and what we’d do next. Chris usually defaults to my call on behavior and follows my lead, but this time I wasn't sure, the answers were not just 'there'.
If he comes out of his room, do we respond? No that will reinforce.
If he’s crying and upset, do we go upstairs? No that will discount the discipline.
Then….
“Mommy, can I have a melatonin?” a very happy voice comes floating down the stairwell.
Crap, again.
“Nope. Good night.”
I was torn. My body ached to go hold him and give him a sleep aide, then the other side of my brain hoped he would lay there and think about what happened. He needs to replay this in his brain and realize what happened. Not suffer, but evaluate. Right?
We cleaned up the kitchen without our usual helper and I needed some time outside. While sitting on the front porch about 20 minutes later, I heard him again…
“Mommy, can you help me find a dream?” in a perfect voice, perfect diction... ugh.
Usually finding dreams is my favorite part of the night. We snuggle up and think of all the good things to dream about and what’s in store for the next day. I wanted to run to him, but needed to stay strong. Surely the look on my face while wielding my fork will be his nightmare tonight.
With every ounce of energy, “Jake, you need to think of something happy and shut your eyes!” I barely came in the house to speak to him and made sure he heard the door slam. I violated the ‘come look at the person you are speaking to’, ‘speak with respect’, and the ‘never go to bed angry’ rules but I feel like I had to.
So now I sit.
I have to purge.
The events of the last hour have broken my heart, angered me beyond words, strengthened my marriage and discipline partnership and taught Jake an important life lesson.
It is so hard disciplining kids on the spectrum. While we try so hard to turn everything positive and into teachable moments, sometimes he has to know that parents get angry and he has to show respect at all times.
This puberty road is going to be a very long bumpy journey. But now I know Jake is capable of tolerating more discipline tactics, or is it that I know that I can handle tougher love!
The house is still quiet.
He put himself to bed.
Alone.
Sweet dreams baby. You are my heart (still).
June 20, 2014
Listen.
Can you hear it?
Not my stomach digesting... not the hum of the dishwasher... not the dog scratching at the door.
Nothing.
The house is quiet now.
A short while ago, there was a screaming fight going on in my brain, as well as glares and stern words across the kitchen table.
I had made dinner for all of us, but while I was preparing we warned Jake that when I said it was time to eat, it’s time to eat. No arguing, no whining and no acting like “Jerky Jake” (his alter-ego he blames everything on when he does not get his way or is getting in trouble.)
10 minute warning.
5 minute warning.
“Come and get it! Mommy’s café is serving steak and veggies. AKA: flank steak au-Jus with roasted Dijon cauliflower, pickled baby turnips and watercress! I spent an hour preparing so he had all that time to play.
He was playing with Chris, trying to make the most of this last day of daddy-vacation, so he promptly reminded Jake of the plan to “go to the table when mommy calls.” There’s nothing I hate worse than making a big meal, which I am still insecure about my cooking, and having it sit on the table chilling while he lollygags around trying to think of an appropriate task-avoiding behavior.
Again daddy prompts, “Mmmm this is so good I’m going to eat now, I can’t wait.” Jake is still sitting at the computer. He then starts making his irritating faces and groaning. (yay typical bx – boo I’m over it)
He meanders past the table as Chris and I are about to dig in then darts to wash-up in the bathroom before eating. (that was a direction he actually followed!)
From the bathroom comes a string of profanity. Jake is on the downhill slide to meltdown. The “F” word sneaks out under the door along with “stupid, mommy, more F word" and assorted others.
I’m trying really hard to ignore, but this is totally pissing me off. He’s been enjoying all these new meals I’m cooking and normally begs me to open “mommy’s diner” for meals, but tonight he’s just done with life.
We came off a huge week of no school routine, an amusement park trip, exciting house guests, the big indoor pool, metro rides, horse lessons, etc etc… He did really well all week, so I think we got comfortable. We relaxed, he can’t and the release is never pretty. He needs the routine even-though he’s begging to try new experiences.
We sat down to eat, he stabbed a few pieces of steak and continued snarling and scoffing. While aiming my fork at him in the air I snapped back, “This person is not welcome at my table, Jake.”
Shit! Oh man, I just lit the fuse.
Breathe. Stay calm. In a low voice...
“Jerky Jake was not invited to dinner and I want my Jake back. Now eat your food. If you make another face or bad comment you will go to your room without mommy and daddy. If you put your hands on me, the police will be called. And if you don’t believe it, TRY ME!”
His shocked face about sliced my heart in half… against the muscle grain, just like the steak he was devouring. I could not believe I said it, but it had been building and Chris backed me up. We try to always focus on the positive and keep everything upbeat, but there are days and none of us are super human. He needs to see real anger and build skills to deal with it.
“It’s hard sometimes to be Jake,” he said. “I just can’t help it.”
“You can stop yourself from being mean, Jake.”
I just looked down and continued eating, praying there would not be another word uttered from the cherubic face across the table from me. Please don’t say another thing or we will have to follow through with my snarly threat.
Suddenly, Chris says, “Goodnight Jake. You. Are. Done. Not another word. I saw the eye-roll and look you just gave your mother, you need to respect her. You are now going to bed.”
Damn.
What just happened?
Go Chris!!
“Good night Jake.”
He got up, left a half-full plate of food, and walked (not stomped) off to his room. He was completely stunned. Really, stunned.
It was totally quiet as he went upstairs.
Before he made it to the landing, Chris and I had split up his plate of food.
We discussed if we took the right action and what we’d do next. Chris usually defaults to my call on behavior and follows my lead, but this time I wasn't sure, the answers were not just 'there'.
If he comes out of his room, do we respond? No that will reinforce.
If he’s crying and upset, do we go upstairs? No that will discount the discipline.
Then….
“Mommy, can I have a melatonin?” a very happy voice comes floating down the stairwell.
Crap, again.
“Nope. Good night.”
I was torn. My body ached to go hold him and give him a sleep aide, then the other side of my brain hoped he would lay there and think about what happened. He needs to replay this in his brain and realize what happened. Not suffer, but evaluate. Right?
We cleaned up the kitchen without our usual helper and I needed some time outside. While sitting on the front porch about 20 minutes later, I heard him again…
“Mommy, can you help me find a dream?” in a perfect voice, perfect diction... ugh.
Usually finding dreams is my favorite part of the night. We snuggle up and think of all the good things to dream about and what’s in store for the next day. I wanted to run to him, but needed to stay strong. Surely the look on my face while wielding my fork will be his nightmare tonight.
With every ounce of energy, “Jake, you need to think of something happy and shut your eyes!” I barely came in the house to speak to him and made sure he heard the door slam. I violated the ‘come look at the person you are speaking to’, ‘speak with respect’, and the ‘never go to bed angry’ rules but I feel like I had to.
So now I sit.
I have to purge.
The events of the last hour have broken my heart, angered me beyond words, strengthened my marriage and discipline partnership and taught Jake an important life lesson.
It is so hard disciplining kids on the spectrum. While we try so hard to turn everything positive and into teachable moments, sometimes he has to know that parents get angry and he has to show respect at all times.
This puberty road is going to be a very long bumpy journey. But now I know Jake is capable of tolerating more discipline tactics, or is it that I know that I can handle tougher love!
The house is still quiet.
He put himself to bed.
Alone.
Sweet dreams baby. You are my heart (still).
Tearing It Up
4/29/14
For the first time in Jake’s 2-year history at the school, he had a time-out today. I wasn’t upset about this, as I know he’s been more “tweenish” lately and short fused too. Struggling daily with his hormone changes and the fact that he thinks he’s 25, we had a rocky night and rushed morning so nothing would shock me.
The part that broke my heart was the fact that he was so disappointed in himself and angry at the teachers that he cried, and cried, and cried at school. He came down for pick-up looking like a prize-fighter; swollen eyes, red circles and snot-stained face.
We talked about it with the teacher in the lobby and he seemed to regain his confidence before we walked out of the school. My heart ached as I listened to him explain that his “autism brain made you make the bad choice.” He detailed how his choice to misbehave came from the autism-part and he knows he shouldn’t have done it but he couldn’t stop himself either.
I never really know what to do or how to respond appropriately at school. All my training and experience with ASD kids goes right out the window when I’m dealing with Jake.
Do I console?
Will that reinforce or bring unwanted attention to the incident?
Will it ‘dismiss’ the behavior as ‘no big deal’?
Remember, behaviors that happen at school stay at school.
Mommy brain wins and I had to hug him.
We weren’t 10 steps past the bus line and the tears began flowing again. At the car, I reminded him how much mommy and daddy love him and no silly behavior choices will ever change that. Oh yeah, and your teachers feel the same way.
He seemed better as we pulled out of the parking lot and headed to make a stop on the way home. He was working really hard to stay calm and chose to stay in the car, still sulking, as I popped into the store.
When I returned, maybe 5 minutes later, he had himself all worked up again.
“Mommy, I had to do something, I’m so mad!”
“What did you do?”
“I had to mess up my point sheet. I can’t stand to look at it.”
I opened up his binder to discover he had written “I am mad”, “I don’t like Ms….”, “I don’t like school” all over the sheet. He then added he still needed to ‘write out’ more emotions to get them out of his head. (Like mommy like son). I handed him a stack of Post-it notes I had in the car.
On each one, a simple scribbled message. “I am so mad!”, “I am upset, I want to yell.”
We stuck them onto the point sheet, and he seemed satisfied. Whew. We continued driving. I struggled to keep my eyes on the road as huge alligator tears rolled down his snot-stained cheeks, stalling slightly for the budding signs of puberty under the surface of his beautiful caramel skin. My brain was searching for a way to help him process this disappointment, while not treating him like a baby or dismissing his feelings and there goes a yellow light.
Focus, Jenn. Focus on the road.
I reminded him that his brain is changing and growing and this is going to happen a lot more in the next few years.
“Puberty is hard work and your brain tells you do things that your body can’t tell it to stop. People make mistakes and it’s okay. It’s how you recover from those mistakes that matters most.”
He listened, sniffed and acknowledged.
We talked about how these mistakes are moments of learning and growth and that’s why he goes to school. We are not mad at him.
For the first time ever, Jake doesn’t want to go to school. I think he’s partly embarrassed and partly pissed off. He didn’t get away with a behavior he chose, so he was busted. That’s typical, so I’ll take it, begrudgingly.
I asked him to think about what he needed to do to feel better. We were just about a mile from home when it hit him.
“Can I rip up and throw away my point sheet?”
I quickly remembered back to a time when I had him write down his angry feelings, read them, rip them up and throw them away. He remembered this and the liberating feelings afterwards, of course.
Once we arrived home, I took a couple pictures of his point sheet in case the teachers need them, and told him to have-at-it. He walked to the kitchen garbage can, changed his mind and then turned on a heel to go to the garage.
He could not even cope with the point sheet being in the house. From the garage I hear the grunts and groans as he was shredding the sheet. I chuckled as I was cooking supper and trying to busy myself. I had no idea which “Jake” would be coming through that door: Angry Jake, Happy Jake or Crying Jake.
I was so not expecting “Elated Jake”. This destruction of this physical reminder was all he needed. He was on the trampoline jumping for glee, then on the floor doing push-ups, then to the kitchen to help me set the table.
It was as if a 50lb weight was physically removed from his shoulders. For a kid who is ruled by a whacky sensory processing system, sensory was the solution this time. He needed to feel the tearing, hear the rips, see the shreds to be free of this massive stress.
I’m sure this will not be the last we hear of this incident, as Jake loves to dwell on the negative and relive it a million times, but at least I have another tool in my kit.
Bedtime included big apologies and lots of the usual prayers. Then I looked at the pictures I took of his point sheet, he had only missed 3 points out of 130 points all day.
4/29/14
For the first time in Jake’s 2-year history at the school, he had a time-out today. I wasn’t upset about this, as I know he’s been more “tweenish” lately and short fused too. Struggling daily with his hormone changes and the fact that he thinks he’s 25, we had a rocky night and rushed morning so nothing would shock me.
The part that broke my heart was the fact that he was so disappointed in himself and angry at the teachers that he cried, and cried, and cried at school. He came down for pick-up looking like a prize-fighter; swollen eyes, red circles and snot-stained face.
We talked about it with the teacher in the lobby and he seemed to regain his confidence before we walked out of the school. My heart ached as I listened to him explain that his “autism brain made you make the bad choice.” He detailed how his choice to misbehave came from the autism-part and he knows he shouldn’t have done it but he couldn’t stop himself either.
I never really know what to do or how to respond appropriately at school. All my training and experience with ASD kids goes right out the window when I’m dealing with Jake.
Do I console?
Will that reinforce or bring unwanted attention to the incident?
Will it ‘dismiss’ the behavior as ‘no big deal’?
Remember, behaviors that happen at school stay at school.
Mommy brain wins and I had to hug him.
We weren’t 10 steps past the bus line and the tears began flowing again. At the car, I reminded him how much mommy and daddy love him and no silly behavior choices will ever change that. Oh yeah, and your teachers feel the same way.
He seemed better as we pulled out of the parking lot and headed to make a stop on the way home. He was working really hard to stay calm and chose to stay in the car, still sulking, as I popped into the store.
When I returned, maybe 5 minutes later, he had himself all worked up again.
“Mommy, I had to do something, I’m so mad!”
“What did you do?”
“I had to mess up my point sheet. I can’t stand to look at it.”
I opened up his binder to discover he had written “I am mad”, “I don’t like Ms….”, “I don’t like school” all over the sheet. He then added he still needed to ‘write out’ more emotions to get them out of his head. (Like mommy like son). I handed him a stack of Post-it notes I had in the car.
On each one, a simple scribbled message. “I am so mad!”, “I am upset, I want to yell.”
We stuck them onto the point sheet, and he seemed satisfied. Whew. We continued driving. I struggled to keep my eyes on the road as huge alligator tears rolled down his snot-stained cheeks, stalling slightly for the budding signs of puberty under the surface of his beautiful caramel skin. My brain was searching for a way to help him process this disappointment, while not treating him like a baby or dismissing his feelings and there goes a yellow light.
Focus, Jenn. Focus on the road.
I reminded him that his brain is changing and growing and this is going to happen a lot more in the next few years.
“Puberty is hard work and your brain tells you do things that your body can’t tell it to stop. People make mistakes and it’s okay. It’s how you recover from those mistakes that matters most.”
He listened, sniffed and acknowledged.
We talked about how these mistakes are moments of learning and growth and that’s why he goes to school. We are not mad at him.
For the first time ever, Jake doesn’t want to go to school. I think he’s partly embarrassed and partly pissed off. He didn’t get away with a behavior he chose, so he was busted. That’s typical, so I’ll take it, begrudgingly.
I asked him to think about what he needed to do to feel better. We were just about a mile from home when it hit him.
“Can I rip up and throw away my point sheet?”
I quickly remembered back to a time when I had him write down his angry feelings, read them, rip them up and throw them away. He remembered this and the liberating feelings afterwards, of course.
Once we arrived home, I took a couple pictures of his point sheet in case the teachers need them, and told him to have-at-it. He walked to the kitchen garbage can, changed his mind and then turned on a heel to go to the garage.
He could not even cope with the point sheet being in the house. From the garage I hear the grunts and groans as he was shredding the sheet. I chuckled as I was cooking supper and trying to busy myself. I had no idea which “Jake” would be coming through that door: Angry Jake, Happy Jake or Crying Jake.
I was so not expecting “Elated Jake”. This destruction of this physical reminder was all he needed. He was on the trampoline jumping for glee, then on the floor doing push-ups, then to the kitchen to help me set the table.
It was as if a 50lb weight was physically removed from his shoulders. For a kid who is ruled by a whacky sensory processing system, sensory was the solution this time. He needed to feel the tearing, hear the rips, see the shreds to be free of this massive stress.
I’m sure this will not be the last we hear of this incident, as Jake loves to dwell on the negative and relive it a million times, but at least I have another tool in my kit.
Bedtime included big apologies and lots of the usual prayers. Then I looked at the pictures I took of his point sheet, he had only missed 3 points out of 130 points all day.
Mommy’s Self Help Break
(4/12/14)
Most days I do really well, or at least try really hard, dealing with Jake’s needs and quirks, but there are days that I surely look just like a giant red button begging to be pushed.
Today I was just nearing the end of my patience and no matter how hard I tried to be calm, the snaps became more frequent and snarkier. I knew he was tired, so I could have given him some rope, but that of course would be too easy.
We don’t let him get away with anything on his good days, and just because he’s tired we still need to stick to our guns. It’s a message we want Jake to learn and some days it’s a lot harder than others!
On the way home from a restaurant this afternoon, I could not stand to hear another one his incessant questions that I've answered 1,000,000,000x's, again. Don’t ask me one more time about the light bulbs in the attic, how it can be 89 degrees if it’s not really summer, or the fact that he’s almost a “grown up man” so where will he build his house.
I told him in the car to take a nap on the way home because I was angry and did not feel like talking. He pushed his seat back, popped on his blue over-used-nearly-crusty neck pillow and hit what we call the “special sleep button” on the car radio. As classical music enveloped both of us in the car, my shoulders fell slightly and he dozed off within seconds.
He slept the entire ride home and upon arrival ran right upstairs to regroup, away from me. I thankfully collapsed on the couch by the window in the sunshine, and totally fell asleep. Jake was not the only tired one! (I should know this by now, but his behavior is usually a mirror of my own crabbiness)
Next thing I knew, he was kissing me on the cheek and asking me why I didn’t respond to his text messages. I sleepily rolled over and nearly onto the floor to find my phone. He sent me 4 messages from upstairs in his room.
The first one read: “I’m sory that did not listen to you I will try on Monday.” Then there was a picture of his hand giving a ‘thumbs up’ followed by an “OK”!
The next message said: “But hay do you want to have family play time in the bed?”
Then a picture of his face in the bed, followed by: “You can if you want to you don’t have to ok! Maybe you can just calm down”. He then attached a video of himself guiding me through 5 deep breaths!”
Watch that little gem here!
Next he appeared with a giant roller. He loves being “rolled” with the giant foam rollers and it always helps him calm down. So of course that’s what I needed.
He started rolling over me while I was still relaxed on the couch. Slid my kneecaps to the sides of my legs with each roll and crunched my guts with all his weight on the roller. I grimaced and he patted my head soothingly.
Next he ran into the bathroom to grab the lotion and into the kitchen for the Clorox wipes!
He carefully pulled my socks off and wiped my feet with the wipes. “Let’s do a little massage time mommy.”
He then smeared lotion onto my feet while coaching me through more deep breathing exercises in hushed, whispery tones.
“How does that feel mommy?”
Silence.
“Does this help you relax, mommy? I love you so much!”
“Yes Jake, thanks,” I muttered while I pretending to be sleepy.
“Oh, I forgot my therapy brush!” He dashed up the stairs to his sensory box and grabbed a therapy brush. Upon returning, he started brushing my feet, ankles, and legs. My arms were next to fall victim to the inches of lotion and brushing, but it really does feel good.
I was so lubed up, I actually felt cold!
“I’m going to go make my own supper now so you stay happy.”
I heard him throwing Tupperware and glass-wear around the kitchen, and giggled under my breath. He was warming up left-over pasta and pouring milk for himself. He even found his own medicine so I would not have to move from my couch-smeared-with-lotion-impromptu-spa-location!
When people say that people with autism are not able to feel compassion or empathy, they are so wrong. Jake so desperately wants people around him to be happy he will do everything in his power to make it happen. Part of it is survival and part of it is saving his own hide! But he feels his own and others' emotions 10-fold.
I continued relaxing the couch and he reappeared with a bright green sticky note.
His finishing touch on my massage was sticking a post-it note into my sock after he slid it back onto my foot. The Post-it reads: S H 1.
He declared: “Mommy you have used one self-help break so far, you have two more to use and then you’re out!”
Negative Needs
(12/26/13)
It has been written over and over again that kiddos with Autism love to perseverate on the negative. Their brains get stuck on traumatic events and sear the picture into their memory. It’s easily accessible and at times it consumes them-- it’s all they can think about. Every redirection attempt comes right back around to some other awful story within minutes.
This entire break from school, maybe it’s because we’re with Jake 24/7, his obsessive need to talk about the negative past has driven us crazy. We are constantly reliving every horrible incident that has ever happened to Jake and our family.
Oh joyous holiday!
In order to avoid talking incessantly about awfulness, Chris and I started a new technique called “talk time” before bed. When a topic comes up, we nip it by saying, “this sounds like something negative, let’s work through it at talk time,” and change the subject. If he pushes, we remind him that we will ignore any more conversation about said topic until later.
We have been known to allow Jake "the next 5 minutes" to talk about ‘whatever’ and then we’re done until talk time.
Tonight during “talk time” Jake provided me with an incredible AH-HA moment of brilliance. He apologized for all his negative talk throughout the last few days, “because it makes mommy want to crack.” I’m not supposed to really interject anything into his “talk time” purge, but tonight curiosity get the best of me. I just couldn’t resist.
So laying on the bed, nose to nose, heart to heart, our conversation moved deeper.
“Jake, how does it make you feel when you talk about negative stories all the time?” I whispered.
“GREAT!” he exclaimed.
I could feel my face turn into a stunned look of shock as I pulled back and had to force a smile.
“Really? Great? How can that possibly feel good? Doesn’t it make you sad going over this stuff over and over and over?”
“Well when I talk about negative, it all just goes away.”
“What do you mean, goes away?”
“Once I talk about it, it’s gone!! It’s so great!!”
His excitement was energizing and you could have knocked me over with a feather.
So every time we stifle his need to talk through a negative-past, we are not helping him. He needs to talk about these times in order to process them. Next I apologized for not allowing him to process as he needs to.
I was so excited to write this story in hopes it can help someone better understand how these amazing, sensitive and blessed brains process.
Here’s hoping for your AH-HA too!!
(12/26/13)
It has been written over and over again that kiddos with Autism love to perseverate on the negative. Their brains get stuck on traumatic events and sear the picture into their memory. It’s easily accessible and at times it consumes them-- it’s all they can think about. Every redirection attempt comes right back around to some other awful story within minutes.
This entire break from school, maybe it’s because we’re with Jake 24/7, his obsessive need to talk about the negative past has driven us crazy. We are constantly reliving every horrible incident that has ever happened to Jake and our family.
Oh joyous holiday!
In order to avoid talking incessantly about awfulness, Chris and I started a new technique called “talk time” before bed. When a topic comes up, we nip it by saying, “this sounds like something negative, let’s work through it at talk time,” and change the subject. If he pushes, we remind him that we will ignore any more conversation about said topic until later.
We have been known to allow Jake "the next 5 minutes" to talk about ‘whatever’ and then we’re done until talk time.
Tonight during “talk time” Jake provided me with an incredible AH-HA moment of brilliance. He apologized for all his negative talk throughout the last few days, “because it makes mommy want to crack.” I’m not supposed to really interject anything into his “talk time” purge, but tonight curiosity get the best of me. I just couldn’t resist.
So laying on the bed, nose to nose, heart to heart, our conversation moved deeper.
“Jake, how does it make you feel when you talk about negative stories all the time?” I whispered.
“GREAT!” he exclaimed.
I could feel my face turn into a stunned look of shock as I pulled back and had to force a smile.
“Really? Great? How can that possibly feel good? Doesn’t it make you sad going over this stuff over and over and over?”
“Well when I talk about negative, it all just goes away.”
“What do you mean, goes away?”
“Once I talk about it, it’s gone!! It’s so great!!”
His excitement was energizing and you could have knocked me over with a feather.
So every time we stifle his need to talk through a negative-past, we are not helping him. He needs to talk about these times in order to process them. Next I apologized for not allowing him to process as he needs to.
I was so excited to write this story in hopes it can help someone better understand how these amazing, sensitive and blessed brains process.
Here’s hoping for your AH-HA too!!
The Edge of the Graham Cracker
July 13, 2013
Telling the truth is hard… but keeping a lie is even harder.
This is the certainty that pertains to most of the human race but applies 10-fold for our super hero. Just today, in the mere 12 hours he was awake, Jake told me about 6 different lies.
Not big lies, but not the truth and then quickly confessed to every one of them.
It’s such a funny thing. This kid can make up a lie but he can’t survive it. Super heroes have such good hearts. They possess the honesty, realness and the necessity to be loved.
Jake knows that lying is one of God’s rules (the Ten Commandments) and he’s not supposed to do it, but he also knows that if he does lie mommy will be mad. I’ve written before that the wrath of Crabby Mommy can be worse than the wrath of God in his eyes. Plus, God doesn’t make his perfect oatmeal breakfast!
So as I was making dessert for him tonight, graham crackers slathered in Nutella, I was carefully trying to break the graham cracker in the middle but I broke it crooked. The break was close to the center line, however, it wasn’t straight. On any given day, broken crackers, too many crumbs, nutella squishing outside the symmetrical cracker border could be total deal breakers but tonight I got lucky. He didn’t even notice. Whew!
And of course my brain found this a funny parallel. The edge of the cracker is so straight and perfect when broken on the handy perforated line; it made me think. This is just like Jake’s honest personality.
So literal.
Straight shooter.
Say exactly what’s on his mind.
Tell the truth.
With partial guidance from the manufacturer!
I also have to laugh how he tries to cover up his lies. He can’t even do it without laughing. A typical conversation will go something like this.
“Jake, did you brush your teeth?”
“Yes!”
“Really? How come I never heard the water come on?”
“Well, I did it dry.”
Now I’m in the doorway of the bathroom, he’s standing there with the biggest snarky grin on his face I’ve ever seen.
“Let me smell your breath, are you lying to me right now?”
“YYYYYEEEEESSSSS!!!!!!!” he exclaims while jumping up and down laughing.
“Why didn’t you brush your teeth?”
“Ooooooohhhhhhh, I forgot!”
“Really? You forgot that I asked you to brush your teeth less than a minute ago?”
“Yes.”
“Are you lying again?”
“YYYYYEEEEESSSSSSS!!!!!”
This is the cycle of my life. I spend much of my time dizzy.
I love that he thinks to tell me a lie for two reasons:
#1- it’s very NT behavior
#2- he really wants me to be happy.
So he’ll tell me what I want to hear.
(I will not however like this when he’s asking me for car keys or to go hang out with girls)
I also adore that he can’t keep his lie.
He just has to come clean – living on the straight edge of a graham cracker.
No bumps, no breaks, no mess. No problem.
July 13, 2013
Telling the truth is hard… but keeping a lie is even harder.
This is the certainty that pertains to most of the human race but applies 10-fold for our super hero. Just today, in the mere 12 hours he was awake, Jake told me about 6 different lies.
Not big lies, but not the truth and then quickly confessed to every one of them.
It’s such a funny thing. This kid can make up a lie but he can’t survive it. Super heroes have such good hearts. They possess the honesty, realness and the necessity to be loved.
Jake knows that lying is one of God’s rules (the Ten Commandments) and he’s not supposed to do it, but he also knows that if he does lie mommy will be mad. I’ve written before that the wrath of Crabby Mommy can be worse than the wrath of God in his eyes. Plus, God doesn’t make his perfect oatmeal breakfast!
So as I was making dessert for him tonight, graham crackers slathered in Nutella, I was carefully trying to break the graham cracker in the middle but I broke it crooked. The break was close to the center line, however, it wasn’t straight. On any given day, broken crackers, too many crumbs, nutella squishing outside the symmetrical cracker border could be total deal breakers but tonight I got lucky. He didn’t even notice. Whew!
And of course my brain found this a funny parallel. The edge of the cracker is so straight and perfect when broken on the handy perforated line; it made me think. This is just like Jake’s honest personality.
So literal.
Straight shooter.
Say exactly what’s on his mind.
Tell the truth.
With partial guidance from the manufacturer!
I also have to laugh how he tries to cover up his lies. He can’t even do it without laughing. A typical conversation will go something like this.
“Jake, did you brush your teeth?”
“Yes!”
“Really? How come I never heard the water come on?”
“Well, I did it dry.”
Now I’m in the doorway of the bathroom, he’s standing there with the biggest snarky grin on his face I’ve ever seen.
“Let me smell your breath, are you lying to me right now?”
“YYYYYEEEEESSSSS!!!!!!!” he exclaims while jumping up and down laughing.
“Why didn’t you brush your teeth?”
“Ooooooohhhhhhh, I forgot!”
“Really? You forgot that I asked you to brush your teeth less than a minute ago?”
“Yes.”
“Are you lying again?”
“YYYYYEEEEESSSSSSS!!!!!”
This is the cycle of my life. I spend much of my time dizzy.
I love that he thinks to tell me a lie for two reasons:
#1- it’s very NT behavior
#2- he really wants me to be happy.
So he’ll tell me what I want to hear.
(I will not however like this when he’s asking me for car keys or to go hang out with girls)
I also adore that he can’t keep his lie.
He just has to come clean – living on the straight edge of a graham cracker.
No bumps, no breaks, no mess. No problem.
----------------------------------------------
The Need to Please
July 24, 2012
I can remember a conversation from 6 years ago like it was yesterday. My dear friend Gloria had two boys around the same time we had one. We would talk like best friends do, about everything under the sun… kids, behavior and husbands included!
She told me that discipline was easy because “all kids want to do is please their parents.” At the time, I remember looking at the phone as if aliens were on the other end. Really? I couldn’t even grasp this idea but secretly wished I could. Having a very young child on the spectrum, all he wanted to do was please himself, meet HIS sensory needs and get HIS way.
Now that our Super Hero is 9, I finally get it and her words are ringing true, almost to a fault. Jake will completely fall apart if he perceives we are mad at him, give him mean eyes or talk with an undesirable tone (ie: not singing HA). This is a really good thing. Most of the time he will work very hard to do what is asked of him. This morning however, his desire to please me almost gave me a heart attack and left me just exasperated.
We came downstairs for breakfast quite late this morning and I had about 40 minutes to make breakfast, dispense meds, make his lunch, get him dressed/washed/brushed, a scooter ride and waiting for the bus. So needless to say I was rushing around doing ten things at once. I cut/counted his meds and vitamins and plopped them down on the table with juice.
He was slurping his cheerios so loudly I made a mental note when I heard the slurps stop so he could take his pills. He’s become quite independent at this part of life, so I try to observe from a distance then reinforce his responsible behavior. While trying to make a slimy salami sandwich, cut celery sticks and warm up breakfast sausage I lost track of monitoring his pill intake, even from afar. By the time I glanced back the pile of pills were gone. Good job Jake.
He next ran up to get dressed and I was still cramming his lunch box into his backpack. I came into the kitchen and noticed a pill on the floor. I did remember dropping what I thought was an empty pill bottle onto the floor earlier but I didn’t think anything came out.
Mommy detective charged upstairs to find Jake brushing his teeth.
“Honey, did you take all your pills?”
“Yes,” he gurgled out of his foaming face.
I hesitated to ask any more questions because I don’t want him to freak out – and he will. I had to know before he went to school. All his pills serve a crucial, individual purpose. I can’t just give it to him; it’s a blood pressure med. His heart rate will get too low.
“You’re sure you took all three swallowys and your melty?”
He turned now and moved closer to see my face in the light of the hallway.
“No?” I see his brow furrow as he’s desperately reading my face, aching to give me the answer I am looking for. The only problem is; I just want the truth, not any special answer.
I turned around and walked away for a few seconds to breathe and rattle my brain. I was partly laughing out of panic and partly out of exasperation. How will I get him to answer? I gather myself and try again as calm as I can be.
“Jake, don’t tell me what you think I want to hear. I need you to think back and tell me if you took all your pills. You will not be in trouble, no matter what your answer is.” I was trying to hide my increasing irritation. This kiddo really cannot function if he misses his meds and it is not pretty. The one on the floor is the pill that allows him to sit in a chair, attend to work and NOT run in constant circles.
“I took my pills, but I’m not sure!”
Now my brain flashed a SNL skit before my eyes! This is so ridiculous. He so wants to give the “right” answer he will say absolutely anything. I could have asked him if he ate dog poop for breakfast and he’d say yes, and it was good, if he thought I wanted him to and smiled in his direction.
After going back and forth like this for more volleys than a Venus vs. Serena match, I ended up in the spare room laughing my head off. My life is preposterous! He came in and started laughing too, partly because I was and he thought that’s what he was supposed to do… and partly because I actually think he realized how funny our little circle-conversation was without realizing he had the power to end the cycle.
All he had to do was tell me if he took all his pills. But that was impossible.
This kiddo is living up to his Super Hero standing: multitasking! Trying so hard to make me happy yet driving me completely batty at the same time. Sigh.
“Hello Ms. Fabulous Social Worker (RG) at school, I have news that you don’t really want to hear. I’m not sure if Jake took all his meds this morning.”
“Oooo Kkkkkk.... what'd we miss?"
What a way to start the day!
The Need to Please
July 24, 2012
I can remember a conversation from 6 years ago like it was yesterday. My dear friend Gloria had two boys around the same time we had one. We would talk like best friends do, about everything under the sun… kids, behavior and husbands included!
She told me that discipline was easy because “all kids want to do is please their parents.” At the time, I remember looking at the phone as if aliens were on the other end. Really? I couldn’t even grasp this idea but secretly wished I could. Having a very young child on the spectrum, all he wanted to do was please himself, meet HIS sensory needs and get HIS way.
Now that our Super Hero is 9, I finally get it and her words are ringing true, almost to a fault. Jake will completely fall apart if he perceives we are mad at him, give him mean eyes or talk with an undesirable tone (ie: not singing HA). This is a really good thing. Most of the time he will work very hard to do what is asked of him. This morning however, his desire to please me almost gave me a heart attack and left me just exasperated.
We came downstairs for breakfast quite late this morning and I had about 40 minutes to make breakfast, dispense meds, make his lunch, get him dressed/washed/brushed, a scooter ride and waiting for the bus. So needless to say I was rushing around doing ten things at once. I cut/counted his meds and vitamins and plopped them down on the table with juice.
He was slurping his cheerios so loudly I made a mental note when I heard the slurps stop so he could take his pills. He’s become quite independent at this part of life, so I try to observe from a distance then reinforce his responsible behavior. While trying to make a slimy salami sandwich, cut celery sticks and warm up breakfast sausage I lost track of monitoring his pill intake, even from afar. By the time I glanced back the pile of pills were gone. Good job Jake.
He next ran up to get dressed and I was still cramming his lunch box into his backpack. I came into the kitchen and noticed a pill on the floor. I did remember dropping what I thought was an empty pill bottle onto the floor earlier but I didn’t think anything came out.
Mommy detective charged upstairs to find Jake brushing his teeth.
“Honey, did you take all your pills?”
“Yes,” he gurgled out of his foaming face.
I hesitated to ask any more questions because I don’t want him to freak out – and he will. I had to know before he went to school. All his pills serve a crucial, individual purpose. I can’t just give it to him; it’s a blood pressure med. His heart rate will get too low.
“You’re sure you took all three swallowys and your melty?”
He turned now and moved closer to see my face in the light of the hallway.
“No?” I see his brow furrow as he’s desperately reading my face, aching to give me the answer I am looking for. The only problem is; I just want the truth, not any special answer.
I turned around and walked away for a few seconds to breathe and rattle my brain. I was partly laughing out of panic and partly out of exasperation. How will I get him to answer? I gather myself and try again as calm as I can be.
“Jake, don’t tell me what you think I want to hear. I need you to think back and tell me if you took all your pills. You will not be in trouble, no matter what your answer is.” I was trying to hide my increasing irritation. This kiddo really cannot function if he misses his meds and it is not pretty. The one on the floor is the pill that allows him to sit in a chair, attend to work and NOT run in constant circles.
“I took my pills, but I’m not sure!”
Now my brain flashed a SNL skit before my eyes! This is so ridiculous. He so wants to give the “right” answer he will say absolutely anything. I could have asked him if he ate dog poop for breakfast and he’d say yes, and it was good, if he thought I wanted him to and smiled in his direction.
After going back and forth like this for more volleys than a Venus vs. Serena match, I ended up in the spare room laughing my head off. My life is preposterous! He came in and started laughing too, partly because I was and he thought that’s what he was supposed to do… and partly because I actually think he realized how funny our little circle-conversation was without realizing he had the power to end the cycle.
All he had to do was tell me if he took all his pills. But that was impossible.
This kiddo is living up to his Super Hero standing: multitasking! Trying so hard to make me happy yet driving me completely batty at the same time. Sigh.
“Hello Ms. Fabulous Social Worker (RG) at school, I have news that you don’t really want to hear. I’m not sure if Jake took all his meds this morning.”
“Oooo Kkkkkk.... what'd we miss?"
What a way to start the day!
---------------------------------------
OCD Face-Off
June 21, 2012
Did you unplug your curling iron?
Is the coffee maker turned off?
Did you lock the front door?
Do you go back and check?
How many times?
So many times, these Super Hero kiddos also struggle with Obsessive Compulsive Disorder. I tend to think the anxiety, OCD, and sensory processing stuff is all co-morbid with an Autism diagnosis, but I’m not a doctor.
Anyway, OCD has been rearing its ugly head under our roof lately. I think some of the meds Jake takes control that little piece of panic, but the OCD shows when he’s outgrowing the dose. It’s a handy little clue for us and our doctors, but we hate to see him suffer.
It wreaks so much havoc in our Super Hero’s head that some nights he can’t fall asleep without checking for certain things repeatedly. It’s taken both Chris and my brains to face off with this slippery situation.
Letting him check, check again, and recheck does not help him learn coping skills… I have jumped into the hallway and physically blocked him from looking and looking again. He'd do it 15 times if I let him.
Our bedtime routine lately is ruled by repetition.
“Mom, are my shoes put away?”
“Yes, Jake.”
“Is my scooter in the garage leaning on the wagon?”
“Yes, Jake.”
“Is my Ipod plugged in and charging?”
“Yes, Jake, go brush your teeth.”
He brushes teeth, picks up his clothes and as he leaves the bathroom, instead of going towards his room he darts to our room where the Ipod is charged. He stares at it with the intensity of a hawk tracking its tiny victim for dinner. I usually prompt, “Jake go to bed or let’s go!” with growing frustration. But usually, he'll head toward his room then with the agility of a young football star running the tires, his feet fly down the stairs two at a time to the hall closet. He whips open the closet door to see his shoes in the exact spot he left them.
Less than a minute later, he's back and in his room.
“Mom, are my shoes put away?”
--no answer--
“Is my Ipod charging?”
--no answer--
Sometimes the questions grow to a panic state – sometimes he is forced to jump up and run out of his room again to double, triple and quadruple check. I suffer watching him as he searches for reassurance, so we’ve had to step up to stop the insanity.
The other day, Chris (being the photographer that he is) came up with an idea that capitalizes on most Super Heroe’s super skills: visualization. When Jake was at that hall closet door again searching for his Zigs, Chris suggested he take a brain picture. He’s a darn genius and I don’t even think he realized how brilliant this idea was.
Now the bedtime routine is, before we even go up to bed, we take brain pictures of his most prized possessions.
He stands over the scooter and makes a noise like a brain camera: chink-click.
Runs in and puts his shoes away and stares at them intently: chink-click.
Then to our room, 2 inches from his charging Ipod he looks and blinks: chink-click.
Brush teeth, clean up, go to bed.
“Mommy, are my shoes put away?”
“Jake, find your brain picture,” and I touch his forehead. “Do you see them hanging in the closet rack?”
“Yep.”
“My Ipod?”
“Find the picture of it lying on the counter with the white cord,” again tapping his forehead. “Do you see it?”
He shuts his eyes for a second and gives me an uncertain,“Yes.”
Uh-oh reassurance needed here.
“Jake, did you hear anyone come in and take it?”
“No.”
“Jake do you think Sammy (dog that doesn’t climb stairs) ran up and took it to play with?”
“No, hee hee.”
“Find the picture again Jake. Where’s your Ipod?”
“It’s plugged in and charging,” he says matter-of-factly.
“Yes it is. I love you Jake. You are my heart.”
If we can continue to give our Super Hero kiddos tools to deal with the situations that cause stress, all of our lives will get easier and the doses on which we depend don’t increase quite as fast. It may take two-years of practice and patience, but it will help them in the long run.
Now I’m finally sitting down for the first time today… wait… did I turn on his ceiling fan? I don’t remember.
Is his white noise machine on? Surely I did.
Did I turn on his music? uuummmm I think so. Wait... should I go look?
Looks like I need to take some brain pictures of my own, just don't know if there's room!!
OCD Face-Off
June 21, 2012
Did you unplug your curling iron?
Is the coffee maker turned off?
Did you lock the front door?
Do you go back and check?
How many times?
So many times, these Super Hero kiddos also struggle with Obsessive Compulsive Disorder. I tend to think the anxiety, OCD, and sensory processing stuff is all co-morbid with an Autism diagnosis, but I’m not a doctor.
Anyway, OCD has been rearing its ugly head under our roof lately. I think some of the meds Jake takes control that little piece of panic, but the OCD shows when he’s outgrowing the dose. It’s a handy little clue for us and our doctors, but we hate to see him suffer.
It wreaks so much havoc in our Super Hero’s head that some nights he can’t fall asleep without checking for certain things repeatedly. It’s taken both Chris and my brains to face off with this slippery situation.
Letting him check, check again, and recheck does not help him learn coping skills… I have jumped into the hallway and physically blocked him from looking and looking again. He'd do it 15 times if I let him.
Our bedtime routine lately is ruled by repetition.
“Mom, are my shoes put away?”
“Yes, Jake.”
“Is my scooter in the garage leaning on the wagon?”
“Yes, Jake.”
“Is my Ipod plugged in and charging?”
“Yes, Jake, go brush your teeth.”
He brushes teeth, picks up his clothes and as he leaves the bathroom, instead of going towards his room he darts to our room where the Ipod is charged. He stares at it with the intensity of a hawk tracking its tiny victim for dinner. I usually prompt, “Jake go to bed or let’s go!” with growing frustration. But usually, he'll head toward his room then with the agility of a young football star running the tires, his feet fly down the stairs two at a time to the hall closet. He whips open the closet door to see his shoes in the exact spot he left them.
Less than a minute later, he's back and in his room.
“Mom, are my shoes put away?”
--no answer--
“Is my Ipod charging?”
--no answer--
Sometimes the questions grow to a panic state – sometimes he is forced to jump up and run out of his room again to double, triple and quadruple check. I suffer watching him as he searches for reassurance, so we’ve had to step up to stop the insanity.
The other day, Chris (being the photographer that he is) came up with an idea that capitalizes on most Super Heroe’s super skills: visualization. When Jake was at that hall closet door again searching for his Zigs, Chris suggested he take a brain picture. He’s a darn genius and I don’t even think he realized how brilliant this idea was.
Now the bedtime routine is, before we even go up to bed, we take brain pictures of his most prized possessions.
He stands over the scooter and makes a noise like a brain camera: chink-click.
Runs in and puts his shoes away and stares at them intently: chink-click.
Then to our room, 2 inches from his charging Ipod he looks and blinks: chink-click.
Brush teeth, clean up, go to bed.
“Mommy, are my shoes put away?”
“Jake, find your brain picture,” and I touch his forehead. “Do you see them hanging in the closet rack?”
“Yep.”
“My Ipod?”
“Find the picture of it lying on the counter with the white cord,” again tapping his forehead. “Do you see it?”
He shuts his eyes for a second and gives me an uncertain,“Yes.”
Uh-oh reassurance needed here.
“Jake, did you hear anyone come in and take it?”
“No.”
“Jake do you think Sammy (dog that doesn’t climb stairs) ran up and took it to play with?”
“No, hee hee.”
“Find the picture again Jake. Where’s your Ipod?”
“It’s plugged in and charging,” he says matter-of-factly.
“Yes it is. I love you Jake. You are my heart.”
If we can continue to give our Super Hero kiddos tools to deal with the situations that cause stress, all of our lives will get easier and the doses on which we depend don’t increase quite as fast. It may take two-years of practice and patience, but it will help them in the long run.
Now I’m finally sitting down for the first time today… wait… did I turn on his ceiling fan? I don’t remember.
Is his white noise machine on? Surely I did.
Did I turn on his music? uuummmm I think so. Wait... should I go look?
Looks like I need to take some brain pictures of my own, just don't know if there's room!!
--------------------------------------------------------------
Mean What You Say, Say What You Mean
June 2, 2012
One of the oldest rules in the discipline book, right?
But how many of us can stick to this one? When raising a Super Hero with the literal mind, it becomes crucial that we think before we speak.
As Jake matures, his brain is changing and more wires are connecting, but he still doesn’t get the inferences, sarcasm and jokes that have become part of the everyday English language.
I told him the other day that if he “asks me one more time if his shoes were put away my head was going to explode!”
“Really? And then what happens? Will the ambulance come? Could I look inside and see the bed?”
“If you keep making that nasty face it’s going to stay that way!”
“Wouldn’t that be funny,” he replies giggling wildly.
“Ummm, let me think. No!”
When disciplining or correcting any child, you have to follow through on your threats and promises. If I had a penny for every time I wanted to suck a stated punishment right back in, I’d be rich. But if you tell a child they’ll be grounded for a week if they come home too late, you better be prepared for company for the next 7 days. On the other hand, if he’s working for a new truck, he better get that new truck upon completion of said task. Be clear and concise and mean it.
Our biggest weapon we have against Jake is the IPod. While we like to shape behavior with positive reinforcement and earning rewards, if he really breaks the boundaries his beloved IPod will disappear! But, before that threat falls out of my or Chris’ mouth, we need to think about our plans for the day. Since Jake still struggles with occupying himself and knowing how to “play”, we need to be ready to plan activities, keep him engaged and on task, and basically give up our plans to do ‘Jake work’.
My day took a crazy turn after we hit the ground running at 4am. By early afternoon, Jake was literally intolerable. He had some tiffs at the playground, an extremely short fuse and couldn’t handle anything off HIS agenda. We cut the playground trip short and returned home. After washing up, he came out of the bathroom and I noticed the giant mess in Hurricane Jake’s wake. I stormed back in there and asked him to follow me, please.
“Freakin’ aaayyy mom, geez!”
Yes… that’s what he said. I have no idea where he learned this, but I was so shocked and mad, I could feel my pulse throbbing in my temples. I had to talk myself down, [take a breath Jenn, breathe… he’s just trying out new words to get a reaction.]
I just looked at him and said with spittle flying, “What I want to do right now is slap you across the face, but since it’s never okay to hit, I will say this: if I hear that word cross your lips again, I will fill your mouth with soap!” Yes I was channeling my mother, don’t judge me! Yellow Dial worked for me.
As I spoke in a slightly raised yet very restrained voice, he was flinching and could barely look at my mean mommy eyes. Just an angry face is way too much input for his super senses. So he thought for a second and then walked over to the sink.
“This purple soap?” he asked picking up the bottle.
“Yes!”
“Does it taste good?”
“Well, if it tasted good, it wouldn’t be much of a punishment would it?”
“Nope. Can I taste it?”
“No Jake it’s gross and will make your tummy sick.”
“Oh really?” he says while pumping some purple, lavender-vanilla antibacterial hand soap onto his finger. In a blink he licked the 1" long line of hand soap off his finger. His tongue bubbled as he grinned devilishly.
“Wow this tastes really good!”
I so wanted to smack him again, but I was stunned and speechless.
“Jake spit it out!”
“No it’s so good. I like the purple flower soap!”
OMG, this child’s brain is ridiculous!
I hope you’re laughing and shaking your head.
Just remember, your friend Jenn Lynn is not afraid to say, “I am NOT smarter than my 9 year old kid with autism and I MEAN IT!”
Mean What You Say, Say What You Mean
June 2, 2012
One of the oldest rules in the discipline book, right?
But how many of us can stick to this one? When raising a Super Hero with the literal mind, it becomes crucial that we think before we speak.
As Jake matures, his brain is changing and more wires are connecting, but he still doesn’t get the inferences, sarcasm and jokes that have become part of the everyday English language.
I told him the other day that if he “asks me one more time if his shoes were put away my head was going to explode!”
“Really? And then what happens? Will the ambulance come? Could I look inside and see the bed?”
“If you keep making that nasty face it’s going to stay that way!”
“Wouldn’t that be funny,” he replies giggling wildly.
“Ummm, let me think. No!”
When disciplining or correcting any child, you have to follow through on your threats and promises. If I had a penny for every time I wanted to suck a stated punishment right back in, I’d be rich. But if you tell a child they’ll be grounded for a week if they come home too late, you better be prepared for company for the next 7 days. On the other hand, if he’s working for a new truck, he better get that new truck upon completion of said task. Be clear and concise and mean it.
Our biggest weapon we have against Jake is the IPod. While we like to shape behavior with positive reinforcement and earning rewards, if he really breaks the boundaries his beloved IPod will disappear! But, before that threat falls out of my or Chris’ mouth, we need to think about our plans for the day. Since Jake still struggles with occupying himself and knowing how to “play”, we need to be ready to plan activities, keep him engaged and on task, and basically give up our plans to do ‘Jake work’.
My day took a crazy turn after we hit the ground running at 4am. By early afternoon, Jake was literally intolerable. He had some tiffs at the playground, an extremely short fuse and couldn’t handle anything off HIS agenda. We cut the playground trip short and returned home. After washing up, he came out of the bathroom and I noticed the giant mess in Hurricane Jake’s wake. I stormed back in there and asked him to follow me, please.
“Freakin’ aaayyy mom, geez!”
Yes… that’s what he said. I have no idea where he learned this, but I was so shocked and mad, I could feel my pulse throbbing in my temples. I had to talk myself down, [take a breath Jenn, breathe… he’s just trying out new words to get a reaction.]
I just looked at him and said with spittle flying, “What I want to do right now is slap you across the face, but since it’s never okay to hit, I will say this: if I hear that word cross your lips again, I will fill your mouth with soap!” Yes I was channeling my mother, don’t judge me! Yellow Dial worked for me.
As I spoke in a slightly raised yet very restrained voice, he was flinching and could barely look at my mean mommy eyes. Just an angry face is way too much input for his super senses. So he thought for a second and then walked over to the sink.
“This purple soap?” he asked picking up the bottle.
“Yes!”
“Does it taste good?”
“Well, if it tasted good, it wouldn’t be much of a punishment would it?”
“Nope. Can I taste it?”
“No Jake it’s gross and will make your tummy sick.”
“Oh really?” he says while pumping some purple, lavender-vanilla antibacterial hand soap onto his finger. In a blink he licked the 1" long line of hand soap off his finger. His tongue bubbled as he grinned devilishly.
“Wow this tastes really good!”
I so wanted to smack him again, but I was stunned and speechless.
“Jake spit it out!”
“No it’s so good. I like the purple flower soap!”
OMG, this child’s brain is ridiculous!
I hope you’re laughing and shaking your head.
Just remember, your friend Jenn Lynn is not afraid to say, “I am NOT smarter than my 9 year old kid with autism and I MEAN IT!”
------------------------------------
Positive Parenting Predicament
August 16, 2011
“Later.”
“Not right now.”
“First this…. Then reward…”
“Quiet hands and feet please.”
“Use nice words or don’t talk at all.”
What’s a parent to do? The last decade or so (at least that’s when we became aware of it) positive parenting has overtaken corporal punishment as the favored way to raise a child and build them up. This works for us, especially with a Super Hero, because spanking gets him excited and he asks for more. It was my understanding that you can discipline, be strict, set boundaries without saying “NO” at every turn.
So that’s that we did, at least. Tried to save the “NO’s” and “STOPS” and raised voices for when Jake was walking into the street without seeing the speeding UPS truck rounding the bend. Now it seems that this positive parenting could be hurting more than helping. Help?!?!
While I like to think we set very clear limits and expectations for Jake, we still have discipline dilemmas… SHOCKER! Jake’s never been able to handle raised voices and screaming, and still falls apart at the slightest unhappy “tone” in my voice. And I mean he completely falls apart, starts climbing up our bodies to hug and kiss our faces, asking “Do you still love me??” It’s torture, if he even perceives “angry eyes or furrowed brows.” He’s big, he’s strong and can lose control.
So for his entire life, we tried not to yell (though not always successful), scowl, and always reassured him while we still love him even though we don’t like his particular behavior. We’ve used time-outs, lots of talks, taking toys and privileges etc… but never corporal. I’ve been told by many, who don’t understand Jake’s differences, that this is a mistake. We're spoiling him because we don't put our hands on him.
I keep hearing from various teachers, instructors and doctors, “he’s got to learn to handle being told NO!” Yes this is true. Crap, here I thought we were doing the right thing all these years. Setting limits while preserving his budding self-esteem.
Our wonderful behaviorist at Kennedy Krieger, knowing his tendency for physical aggression, keeps telling us to discipline without using “NO” if it’s going to create an adverse reaction ie: him smacking me or hurting himself. So now, his teachers are stuck having to deal with his physical and dramatic fallout when he’s told “NO” and I feel like an idiot. I don’t feel like Jake is spoiled but many think because he’s an only child and blessed with Super Powers, it’s his way -- ALWAYS… and that’s just not true. (Mommy gggrrr)
Can you see my frustration? What are we supposed to do? We know what works best for Jake, what he understands and what meets all of our needs: Lots of countdowns, big warnings, lots of structure and clear schedules, not a lot of “NO’s”, “STOPS” unless he’s in danger. But is this really what’s best for his independence in the long run? He’s 8 and still falls apart if he’s told a firm “no” and his expectations are not going to be met.
Seeking advice this time! If you read this leave a comment darn it!
Positive Parenting Predicament
August 16, 2011
“Later.”
“Not right now.”
“First this…. Then reward…”
“Quiet hands and feet please.”
“Use nice words or don’t talk at all.”
What’s a parent to do? The last decade or so (at least that’s when we became aware of it) positive parenting has overtaken corporal punishment as the favored way to raise a child and build them up. This works for us, especially with a Super Hero, because spanking gets him excited and he asks for more. It was my understanding that you can discipline, be strict, set boundaries without saying “NO” at every turn.
So that’s that we did, at least. Tried to save the “NO’s” and “STOPS” and raised voices for when Jake was walking into the street without seeing the speeding UPS truck rounding the bend. Now it seems that this positive parenting could be hurting more than helping. Help?!?!
While I like to think we set very clear limits and expectations for Jake, we still have discipline dilemmas… SHOCKER! Jake’s never been able to handle raised voices and screaming, and still falls apart at the slightest unhappy “tone” in my voice. And I mean he completely falls apart, starts climbing up our bodies to hug and kiss our faces, asking “Do you still love me??” It’s torture, if he even perceives “angry eyes or furrowed brows.” He’s big, he’s strong and can lose control.
So for his entire life, we tried not to yell (though not always successful), scowl, and always reassured him while we still love him even though we don’t like his particular behavior. We’ve used time-outs, lots of talks, taking toys and privileges etc… but never corporal. I’ve been told by many, who don’t understand Jake’s differences, that this is a mistake. We're spoiling him because we don't put our hands on him.
I keep hearing from various teachers, instructors and doctors, “he’s got to learn to handle being told NO!” Yes this is true. Crap, here I thought we were doing the right thing all these years. Setting limits while preserving his budding self-esteem.
Our wonderful behaviorist at Kennedy Krieger, knowing his tendency for physical aggression, keeps telling us to discipline without using “NO” if it’s going to create an adverse reaction ie: him smacking me or hurting himself. So now, his teachers are stuck having to deal with his physical and dramatic fallout when he’s told “NO” and I feel like an idiot. I don’t feel like Jake is spoiled but many think because he’s an only child and blessed with Super Powers, it’s his way -- ALWAYS… and that’s just not true. (Mommy gggrrr)
Can you see my frustration? What are we supposed to do? We know what works best for Jake, what he understands and what meets all of our needs: Lots of countdowns, big warnings, lots of structure and clear schedules, not a lot of “NO’s”, “STOPS” unless he’s in danger. But is this really what’s best for his independence in the long run? He’s 8 and still falls apart if he’s told a firm “no” and his expectations are not going to be met.
Seeking advice this time! If you read this leave a comment darn it!
------------------------------------------------
Someone's sleeping in my bed and......
June 4, 2011
From the day Jake came home 8+ years ago, he has never, ever slept in our bed, not even in our room. Even when sick he’s found comfort in his own room, with his taggie blankie, 30 lb. heavy blanket and his stuffed animal friends. As the landscape of life changes, Jake’s reaching out for comfort in ways he never has before.
The pain we feel when our Super Hero is sad, confused and scared, is all consuming. All we want to do, all ANY parent wants to do, is ease the pain and reassure the kiddo that he’s safe and loved. Words just don’t quite cut it when our special guys can go from happy to hysterical faster than punching a Porsche from 0-100 mph!!
Tonight when I put Jake in bed after an exhausting and draining week for all of us, he’s nearing the end of his rope. Fueling this fire is a flaming red scrape on his leg he received after falling off his bike. He can’t stand the sight of this new physical imperfection. He panics just looking at his leg with the giant surface scrape and the floodgates open. All the fear comes flowing out.
“I don’t want to wake up tomorrow or ever, I just want to go to heaven where I won’t need a kickstand (cane) to walk!!! I want to have friends, I don’t have any friends!!! Mommy can’t go away any more, you have to stay here with Jake!!” Alligator tears are flowing down his cheeks and his quivering lips are deflecting streams of snot as he releases all his deepest secrets. I fight back my own tears and feelings of inadequacy as I sit next to him on the bed.
Feelings of uncertainty are also being sparked by looming schedule changes. The end of the school year is approaching quickly and that means the schedule is going to change. New teachers, new classmates and summer camp. We’re taking the longest trip we’ve ever taken (9 days) to Wisconsin and Minnesota in a few weeks. Three hotels, two airplane rides, rental cars, various amusement parks and lots of time with family and friends: away from home, funky food, and different expectations. Changes = anxiety.
His beloved trampoline has also taken a turn for the worse. One of the steel legs is actually bending off. Running in circles around the edges, as opposed to bouncing in the middle, has apparently taken its toll. While we plan to get it fixed and make safe for children again, we may donate it to the school or favorite OT teacher. The 9’ bouncer has been a fixture in our family room for 4 years. He used it almost every morning to regulate his baffled body by jumping for more than an hour with his IPod blaring rock ‘n roll or Christian rock. So not only is the look of the house changing, but his favorite “ticket to calmness” is dismantled. His therapist knows this is a major life change, but is urging us to teach Jake some more typical/practical ways to handle his unsettled feelings. Regardless, this is change. Changes = fear.
Even though I really need the sleep, do I really pick this bedroom battle tonight? Should I just leave him in our bed to rebuild his feelings of security? Am I starting a trend that will later be impossible to break? Will letting him stay put in our room add to his fear of being away from us during this transitional time?
I have a feeling when we wake up in the morning… our sleeping beauty will still be there.
Someone's sleeping in my bed and......
June 4, 2011
From the day Jake came home 8+ years ago, he has never, ever slept in our bed, not even in our room. Even when sick he’s found comfort in his own room, with his taggie blankie, 30 lb. heavy blanket and his stuffed animal friends. As the landscape of life changes, Jake’s reaching out for comfort in ways he never has before.
The pain we feel when our Super Hero is sad, confused and scared, is all consuming. All we want to do, all ANY parent wants to do, is ease the pain and reassure the kiddo that he’s safe and loved. Words just don’t quite cut it when our special guys can go from happy to hysterical faster than punching a Porsche from 0-100 mph!!
Tonight when I put Jake in bed after an exhausting and draining week for all of us, he’s nearing the end of his rope. Fueling this fire is a flaming red scrape on his leg he received after falling off his bike. He can’t stand the sight of this new physical imperfection. He panics just looking at his leg with the giant surface scrape and the floodgates open. All the fear comes flowing out.
“I don’t want to wake up tomorrow or ever, I just want to go to heaven where I won’t need a kickstand (cane) to walk!!! I want to have friends, I don’t have any friends!!! Mommy can’t go away any more, you have to stay here with Jake!!” Alligator tears are flowing down his cheeks and his quivering lips are deflecting streams of snot as he releases all his deepest secrets. I fight back my own tears and feelings of inadequacy as I sit next to him on the bed.
Feelings of uncertainty are also being sparked by looming schedule changes. The end of the school year is approaching quickly and that means the schedule is going to change. New teachers, new classmates and summer camp. We’re taking the longest trip we’ve ever taken (9 days) to Wisconsin and Minnesota in a few weeks. Three hotels, two airplane rides, rental cars, various amusement parks and lots of time with family and friends: away from home, funky food, and different expectations. Changes = anxiety.
His beloved trampoline has also taken a turn for the worse. One of the steel legs is actually bending off. Running in circles around the edges, as opposed to bouncing in the middle, has apparently taken its toll. While we plan to get it fixed and make safe for children again, we may donate it to the school or favorite OT teacher. The 9’ bouncer has been a fixture in our family room for 4 years. He used it almost every morning to regulate his baffled body by jumping for more than an hour with his IPod blaring rock ‘n roll or Christian rock. So not only is the look of the house changing, but his favorite “ticket to calmness” is dismantled. His therapist knows this is a major life change, but is urging us to teach Jake some more typical/practical ways to handle his unsettled feelings. Regardless, this is change. Changes = fear.
Even though I really need the sleep, do I really pick this bedroom battle tonight? Should I just leave him in our bed to rebuild his feelings of security? Am I starting a trend that will later be impossible to break? Will letting him stay put in our room add to his fear of being away from us during this transitional time?
I have a feeling when we wake up in the morning… our sleeping beauty will still be there.
-----------------------------------------
Delete "BAD" From Your Vocabulary
April 30, 2011
Bad–adjective 1. not good in any manner or degree. 2. having a wicked or evil character; morally reprehensible. --Dictionary.com
Since I jumped back into the working world of special education, I am reminded of one reason I needed a break last time I worked with these special children. THEIR PARENTS.
I mean no disrespect, nor do I mean all parents. I don't think we have all the answers, but one thing we know in our hearts is this: These kids are not BAD kids. Struggling to communicate in any way possible, YES, trying to ruin our lives, NO! Screaming in frustration because of their inability to communicate, YES, screaming to cause a scene or embarrass, NO! Manipulative YES, bad NO! Hey, manipulation is a form of communication.
Any child’s spirit is so easily dashed, thus the onslaught of positive parenting books, but often times frustrated parents of non-verbal children think their kids don’t hear what they’re saying. These blessed kids may not be able to speak appropriately and respond as you hope, but their receptive is there. Not only do the children hear you, they will repeat what they hear one day.
I’ve heard children with NO appropriate language script to themselves, “dumb boy, bad boy, shut up and sit down, stupid kid, get over here you #@$& kid!” Is this any way to talk to a child, let alone a child with needs so great? What happened to lifting our kids up and building confidence?
Rolling on the floor, running out of the house, and throwing objects are common behaviors in our home. Should we scream and punish Jake for escaping an overwhelming situation the only way he knows how? He cannot find the right words to explain what he’s feeling.
Biting, hitting and kicking are also frequent reactions of many super-powered kids. Yes these behaviors need to be stopped and redirected as calmly as possible, but they do not make our Super Hero a bad child. Challenging YES, complicated YES YES, bad NO.
Sometimes all parents get upset when their kids don’t live up to their expectation. I have been there myself more than once. I’ve prayed many a day that we just have one "easy" day. Chris and I both have had to stop ourselves from snapping in anger and saying something harmful when Jake is unhooked. I’m not saying we never get mad, that’s impossible, but we do consciously filter what words we use to correct the behavior. If I’m frustrated and about to lose it, Chris will step in with a cooler head and vice versa.
I’ve seen young children pull food from the cupboards, empty a refrigerator onto the kitchen floor, pour pitchers of water out exactly where they stand. Are they doing this to act up? Are they just trying to make the parents mad? NO!!! Think about it – WHY would a non-verbal child pull food from the fridge and drop it on the floor? Because he's a brat? NO! When’s the last time the kiddo ate a meal? Is he trying to tell you he’s hungry? Try to hear what your child is not able to say.
Since development in our kids is likely delayed, it’s not unusual for a 6-year-old child to act like a 3 or 4-year-old. Behaviors typically seen in toddlers do surprise some when witnessed in an older child but they are not bad kids “acting like babies”. It’s just where they are developmentally.
Scolding, admonishing and reprimanding will do nothing but belittle, diminish any sense of trust the child may have developed. Think of the reason before reacting.
Accept our kids. Teach our kids. Model behavior options for them.
Delete "BAD" From Your Vocabulary
April 30, 2011
Bad–adjective 1. not good in any manner or degree. 2. having a wicked or evil character; morally reprehensible. --Dictionary.com
Since I jumped back into the working world of special education, I am reminded of one reason I needed a break last time I worked with these special children. THEIR PARENTS.
I mean no disrespect, nor do I mean all parents. I don't think we have all the answers, but one thing we know in our hearts is this: These kids are not BAD kids. Struggling to communicate in any way possible, YES, trying to ruin our lives, NO! Screaming in frustration because of their inability to communicate, YES, screaming to cause a scene or embarrass, NO! Manipulative YES, bad NO! Hey, manipulation is a form of communication.
Any child’s spirit is so easily dashed, thus the onslaught of positive parenting books, but often times frustrated parents of non-verbal children think their kids don’t hear what they’re saying. These blessed kids may not be able to speak appropriately and respond as you hope, but their receptive is there. Not only do the children hear you, they will repeat what they hear one day.
I’ve heard children with NO appropriate language script to themselves, “dumb boy, bad boy, shut up and sit down, stupid kid, get over here you #@$& kid!” Is this any way to talk to a child, let alone a child with needs so great? What happened to lifting our kids up and building confidence?
Rolling on the floor, running out of the house, and throwing objects are common behaviors in our home. Should we scream and punish Jake for escaping an overwhelming situation the only way he knows how? He cannot find the right words to explain what he’s feeling.
Biting, hitting and kicking are also frequent reactions of many super-powered kids. Yes these behaviors need to be stopped and redirected as calmly as possible, but they do not make our Super Hero a bad child. Challenging YES, complicated YES YES, bad NO.
Sometimes all parents get upset when their kids don’t live up to their expectation. I have been there myself more than once. I’ve prayed many a day that we just have one "easy" day. Chris and I both have had to stop ourselves from snapping in anger and saying something harmful when Jake is unhooked. I’m not saying we never get mad, that’s impossible, but we do consciously filter what words we use to correct the behavior. If I’m frustrated and about to lose it, Chris will step in with a cooler head and vice versa.
I’ve seen young children pull food from the cupboards, empty a refrigerator onto the kitchen floor, pour pitchers of water out exactly where they stand. Are they doing this to act up? Are they just trying to make the parents mad? NO!!! Think about it – WHY would a non-verbal child pull food from the fridge and drop it on the floor? Because he's a brat? NO! When’s the last time the kiddo ate a meal? Is he trying to tell you he’s hungry? Try to hear what your child is not able to say.
Since development in our kids is likely delayed, it’s not unusual for a 6-year-old child to act like a 3 or 4-year-old. Behaviors typically seen in toddlers do surprise some when witnessed in an older child but they are not bad kids “acting like babies”. It’s just where they are developmentally.
Scolding, admonishing and reprimanding will do nothing but belittle, diminish any sense of trust the child may have developed. Think of the reason before reacting.
Accept our kids. Teach our kids. Model behavior options for them.
--------------------------------------
Bedroom Roulette
October 9, 2011
This exhausting ritual started about 2 months ago. We put Jake in bed, go through the seemingly ridiculous bed time routine which is exhausting in itself, say our goodnights and leave the room. Now there’s a twist.
“Love you forever, you are my heart, stay in YOUR bed.”
“Ok, mommy, I love you, see you at 6.”
Leave room.
Walk downstairs.
Door opens.
Footsteps pound the carpeted hallway.
A sleepy Super Hero stumbles door-to-door while holding his dolphin nightlight resembling Mary Ingalls carrying a candle to the outhouse. (Yes, I love Little House!)
Another door slams.
At this point, many things need to be considered: Are we up for the fight? Does it really matter where he sleeps? What if we just left him? We need to be consistent. Crap. Do I have to? If Chris is home, let the Rock, Paper, Scissors begin! Neither one of us wants to be the bad guy, but I’m better at NOT talking to him. Chris is better at not laughing, but will engage him.
The biggest issue: it’s almost guaranteed that whatever bed he falls asleep in, he’ll pee in. One bed in our house has a mattress protector; it’s not the guest room, the quiet room nor is it the master!!!
Up the stairs I go channeling my best Monty Hall. Pick door #1 (dishwasher), door #2 (goat eating hay) or door #3 (a new car!) Where’s the hidden prize? I can usually tell by which door is ajar, but he’s wising up. He’ll get in a new bed and lock the door!
The second he hears the door knob click he’s burrowing beneath the blankets. I usually just rip the covers back while he explains why this different bed is so much more comfy than his. I just point down the hall. Amazing how he can follow that direction.
Pee pit stop and back in bed.
This week, I finally started getting smart. In my best mean-mommy moment, I started locking all the bedroom doors at bedtime. Granted the first night I prohibited his dance of the dens, he had a massive meltdown at bed time. Sucks more than words, but the message got through. So, as hoped, our super hero started getting smarter. (So beautifully typical)
I put him to bed tonight. Went through all the rituals: book, prayers, perfectly symmetrical comforter with no bumps, bald eagle named Obama under one arm, 2 nightlights illuminated, sound machine on full blast, teeth brushed, clothes picked up, bathroom cleaned. I left him all calm and cuddly in his bed, feeling pretty good that he was going to stay put. He was whipped from a busy day at church, swim lesson, art show (thanks D!) and way too much ice cream.
I dragged my exhausted behind down the couch and collapsed. Not even five minutes later, footsteps, door knobs and a new noise: long scraping sound followed by little tink-tink sounds.
This is new.
Wait and listen.
I don’t hear frustration. No fists pounding on the door. No tears or screeches. HHHmmm. If I go up, I’m giving him attention. If I ignore him, he’s liable to get in real trouble or hurt, especially since I know all the doors are locked.
After a wobbly and weary climb up the stairs I find Jake, standing on his desk chair outside the master bedroom door. He was replacing the tiny key above the door frame.
“Whatcha doing Jake?”
“I’m just making sure your bed was nice and cuddly for you, mommy.” (Beautifully typical lie!!! YES)
I nearly choked to hold back the screams of laughter bubbling in my chest.
“Oh really? How’d you get up there?” shoot he saw me smile.
“I dragged my desk chair down here, see??” he said with the goofiest grin, leaning over the banister while choking down his own wildly guilty giggles.
“Thanks Jake, goodnight. Back in your bed. I love you!”
“Alright,” he sighs while pulling the wooden chair back down the hallway. “Come tell me what to dream about, I don’t want a scary nightmare.”
So here I am, took the bait and kneeling next to his bed. “Let’s think about some fun we had this weekend: The glass elevator at the Old Post office, spinning the cymbals during church and ice cream cones or your new art teacher D!”
“OK, that’s good, goodnight mommy.”
For the record, he does NOT sleep on a bed of nails. He has a lovely, way-too-big-queen-sized-bed with a ba-zillion blankets, pillows and comforters collected from his previous late night ventures into all the other bedrooms.
This is just the latest game on the magically whacky wheel of autism. I’ll bet it all on a new game next month. How ‘bout Texas Hold ‘em!
Special thanks to super great friend Mikey for being my awesome thesaurus tonight and constant support! Glad you're sharing this crazy life with us.
Bedroom Roulette
October 9, 2011
This exhausting ritual started about 2 months ago. We put Jake in bed, go through the seemingly ridiculous bed time routine which is exhausting in itself, say our goodnights and leave the room. Now there’s a twist.
“Love you forever, you are my heart, stay in YOUR bed.”
“Ok, mommy, I love you, see you at 6.”
Leave room.
Walk downstairs.
Door opens.
Footsteps pound the carpeted hallway.
A sleepy Super Hero stumbles door-to-door while holding his dolphin nightlight resembling Mary Ingalls carrying a candle to the outhouse. (Yes, I love Little House!)
Another door slams.
At this point, many things need to be considered: Are we up for the fight? Does it really matter where he sleeps? What if we just left him? We need to be consistent. Crap. Do I have to? If Chris is home, let the Rock, Paper, Scissors begin! Neither one of us wants to be the bad guy, but I’m better at NOT talking to him. Chris is better at not laughing, but will engage him.
The biggest issue: it’s almost guaranteed that whatever bed he falls asleep in, he’ll pee in. One bed in our house has a mattress protector; it’s not the guest room, the quiet room nor is it the master!!!
Up the stairs I go channeling my best Monty Hall. Pick door #1 (dishwasher), door #2 (goat eating hay) or door #3 (a new car!) Where’s the hidden prize? I can usually tell by which door is ajar, but he’s wising up. He’ll get in a new bed and lock the door!
The second he hears the door knob click he’s burrowing beneath the blankets. I usually just rip the covers back while he explains why this different bed is so much more comfy than his. I just point down the hall. Amazing how he can follow that direction.
Pee pit stop and back in bed.
This week, I finally started getting smart. In my best mean-mommy moment, I started locking all the bedroom doors at bedtime. Granted the first night I prohibited his dance of the dens, he had a massive meltdown at bed time. Sucks more than words, but the message got through. So, as hoped, our super hero started getting smarter. (So beautifully typical)
I put him to bed tonight. Went through all the rituals: book, prayers, perfectly symmetrical comforter with no bumps, bald eagle named Obama under one arm, 2 nightlights illuminated, sound machine on full blast, teeth brushed, clothes picked up, bathroom cleaned. I left him all calm and cuddly in his bed, feeling pretty good that he was going to stay put. He was whipped from a busy day at church, swim lesson, art show (thanks D!) and way too much ice cream.
I dragged my exhausted behind down the couch and collapsed. Not even five minutes later, footsteps, door knobs and a new noise: long scraping sound followed by little tink-tink sounds.
This is new.
Wait and listen.
I don’t hear frustration. No fists pounding on the door. No tears or screeches. HHHmmm. If I go up, I’m giving him attention. If I ignore him, he’s liable to get in real trouble or hurt, especially since I know all the doors are locked.
After a wobbly and weary climb up the stairs I find Jake, standing on his desk chair outside the master bedroom door. He was replacing the tiny key above the door frame.
“Whatcha doing Jake?”
“I’m just making sure your bed was nice and cuddly for you, mommy.” (Beautifully typical lie!!! YES)
I nearly choked to hold back the screams of laughter bubbling in my chest.
“Oh really? How’d you get up there?” shoot he saw me smile.
“I dragged my desk chair down here, see??” he said with the goofiest grin, leaning over the banister while choking down his own wildly guilty giggles.
“Thanks Jake, goodnight. Back in your bed. I love you!”
“Alright,” he sighs while pulling the wooden chair back down the hallway. “Come tell me what to dream about, I don’t want a scary nightmare.”
So here I am, took the bait and kneeling next to his bed. “Let’s think about some fun we had this weekend: The glass elevator at the Old Post office, spinning the cymbals during church and ice cream cones or your new art teacher D!”
“OK, that’s good, goodnight mommy.”
For the record, he does NOT sleep on a bed of nails. He has a lovely, way-too-big-queen-sized-bed with a ba-zillion blankets, pillows and comforters collected from his previous late night ventures into all the other bedrooms.
This is just the latest game on the magically whacky wheel of autism. I’ll bet it all on a new game next month. How ‘bout Texas Hold ‘em!
Special thanks to super great friend Mikey for being my awesome thesaurus tonight and constant support! Glad you're sharing this crazy life with us.
----------------------------------------------------
Ruling the World, Without Even Trying
March 29, 2011
Sit in on any Aspie, Spectrum, or PDD support group and a common theme among the worn out attendees is ‘having a life’ and ‘finding respite caregivers that get it’. It’s a very difficult balance, but they go hand in hand and need to be pondered for our own sanity. A parent can be in a happy marriage with tons of love, financial freedom, huge family support and one Super Hero changes everything.
This high powered creature swings the dynamic of the marriage, the finances and the future. Emotions are elevated as our Super Hero’s (anxiety based) need to control every situation steams ahead.
In our experience, until we discovered the world’s best babysitters (MS,SC) I didn’t do ANYTHING. I’d choose to stay home and chill, instead of have a caregiver inadvertently derail Jake’s progress. I’ve missed concerts, girl’s night out, activities at school and movies instead of sacrificing our struggles and success. Leaving Jake with a sitter could undo 6 months of work in 2 minutes. It has happened and will continue. Most of the time, in the sitter’s defense, they didn’t even realize that they were undoing – by doing.
Jake 1, Grown-ups 0
Parents out there, how many times have you struggled to ‘not’ respond to an undesired, repeated behavior, hoping to extinguish it, only to have someone come in and tell you how cute/amazing/funny it is when he does that exact behavior?
As many professionals in the field have told us, Intermittent Reinforcement is the strongest. This can work for you or against you, but be careful of the pitfalls! Adults can inadvertently reinforce a Super Hero’s behavior just by rolling their eyeballs. So by showing emotions you can hand the control of any situation to your critter.
As two parents who take turns tackling Jake, another obstacle is getting OUR lines crossed. I’ll have Jake when Chris works, then I work when he’s off. So even within the family unit, where WE KNOW consistency is key, we sometimes reinforce differently. I’m an expert at forgetting to tell Chris which annoying behaviors I’ve started ignoring and why I’ve done so. For example; I’ll be ignoring some behavior at the table for 3 days and it slips my mind to remind Chris on “Daddy Days” while I’m focused on work. So Jake will try the undesired behavior for daddio and it’s met with a forceful, “Excuse me, that’s not ok,” while this is a perfectly appropriate reaction for throwing food (for example), Chris has no idea I’ve used my magical mommy powers to ignore this for 3 days. Jake wins: positive or negative is still reinforcing.
Jake 2, Grown-ups 0
Lately, Jake thrives on getting any reaction, a strong reaction. In fact, the stronger the better. So as we go through day after day ignoring all his repeated, pervasive and obsessive talk about friends’ bellybuttons, privates and underwear, a visitor comes into the picture, gasps and glares at me when he asks a personal question. Jake’s Super Powers intercept “the look” or my reaction/non-reaction to it.
KKKKAAA BBBAAAMMMYYYYYY PPPOOOWWWWW ZZZIIIIPPPYYYY the Super Hero is reinforced with a mere grimace. (MOMMY GGGRRRR) The behavior is reinforced, he wins again.
Jake 3, Grown-ups 0
If we, as parents, could just have our own super powers to speak through mental telepathy and preemptively to anyone that encounters Jake! “Hi Martha good to see you, you remember Jake,” {While beaming a mental message to them, don’t respond to any potty talk, private talk or perverted talk please. Redirect him to the clouds in the sky. Don’t mention bare feet, belly buttons or butts either….. begging you please.} “He’s 8 now and getting so tall isn’t he?”
Jake uses his Super Powers of perception to read the social cues, which is quite ironic given the diagnosis of Autism. He can tell when I walk into the room and I’m carrying stress in my shoulders or on my face. He can tell when I am tired, crabby, happy, cool or just ‘done’ without any words being spoken. A simple sigh or shrug signals him that mommy has just turned into a giant red button to push, push, push until I crack and yell. Once I yell, the downward spiral begins: physical attacks, time outs, pee, puke and bites.
So I find myself just trying to keep the Super Powered peace. Accommodate, adjust and answer the same question politely 59,000x's in a row.
There you have it; HE has the ability to control the world without even trying.
Now where did I put my Super Powered Patience?!
Ruling the World, Without Even Trying
March 29, 2011
Sit in on any Aspie, Spectrum, or PDD support group and a common theme among the worn out attendees is ‘having a life’ and ‘finding respite caregivers that get it’. It’s a very difficult balance, but they go hand in hand and need to be pondered for our own sanity. A parent can be in a happy marriage with tons of love, financial freedom, huge family support and one Super Hero changes everything.
This high powered creature swings the dynamic of the marriage, the finances and the future. Emotions are elevated as our Super Hero’s (anxiety based) need to control every situation steams ahead.
In our experience, until we discovered the world’s best babysitters (MS,SC) I didn’t do ANYTHING. I’d choose to stay home and chill, instead of have a caregiver inadvertently derail Jake’s progress. I’ve missed concerts, girl’s night out, activities at school and movies instead of sacrificing our struggles and success. Leaving Jake with a sitter could undo 6 months of work in 2 minutes. It has happened and will continue. Most of the time, in the sitter’s defense, they didn’t even realize that they were undoing – by doing.
Jake 1, Grown-ups 0
Parents out there, how many times have you struggled to ‘not’ respond to an undesired, repeated behavior, hoping to extinguish it, only to have someone come in and tell you how cute/amazing/funny it is when he does that exact behavior?
As many professionals in the field have told us, Intermittent Reinforcement is the strongest. This can work for you or against you, but be careful of the pitfalls! Adults can inadvertently reinforce a Super Hero’s behavior just by rolling their eyeballs. So by showing emotions you can hand the control of any situation to your critter.
As two parents who take turns tackling Jake, another obstacle is getting OUR lines crossed. I’ll have Jake when Chris works, then I work when he’s off. So even within the family unit, where WE KNOW consistency is key, we sometimes reinforce differently. I’m an expert at forgetting to tell Chris which annoying behaviors I’ve started ignoring and why I’ve done so. For example; I’ll be ignoring some behavior at the table for 3 days and it slips my mind to remind Chris on “Daddy Days” while I’m focused on work. So Jake will try the undesired behavior for daddio and it’s met with a forceful, “Excuse me, that’s not ok,” while this is a perfectly appropriate reaction for throwing food (for example), Chris has no idea I’ve used my magical mommy powers to ignore this for 3 days. Jake wins: positive or negative is still reinforcing.
Jake 2, Grown-ups 0
Lately, Jake thrives on getting any reaction, a strong reaction. In fact, the stronger the better. So as we go through day after day ignoring all his repeated, pervasive and obsessive talk about friends’ bellybuttons, privates and underwear, a visitor comes into the picture, gasps and glares at me when he asks a personal question. Jake’s Super Powers intercept “the look” or my reaction/non-reaction to it.
KKKKAAA BBBAAAMMMYYYYYY PPPOOOWWWWW ZZZIIIIPPPYYYY the Super Hero is reinforced with a mere grimace. (MOMMY GGGRRRR) The behavior is reinforced, he wins again.
Jake 3, Grown-ups 0
If we, as parents, could just have our own super powers to speak through mental telepathy and preemptively to anyone that encounters Jake! “Hi Martha good to see you, you remember Jake,” {While beaming a mental message to them, don’t respond to any potty talk, private talk or perverted talk please. Redirect him to the clouds in the sky. Don’t mention bare feet, belly buttons or butts either….. begging you please.} “He’s 8 now and getting so tall isn’t he?”
Jake uses his Super Powers of perception to read the social cues, which is quite ironic given the diagnosis of Autism. He can tell when I walk into the room and I’m carrying stress in my shoulders or on my face. He can tell when I am tired, crabby, happy, cool or just ‘done’ without any words being spoken. A simple sigh or shrug signals him that mommy has just turned into a giant red button to push, push, push until I crack and yell. Once I yell, the downward spiral begins: physical attacks, time outs, pee, puke and bites.
So I find myself just trying to keep the Super Powered peace. Accommodate, adjust and answer the same question politely 59,000x's in a row.
There you have it; HE has the ability to control the world without even trying.
Now where did I put my Super Powered Patience?!
