Last night, Brent and I took advantage of an opportunity to have dinner out to get our calendars linked. We decided to try a new restaurant that we haven't been to before. It was large and industrial inside, exposed brick and pipes. Cold. It was bitterly cold inside. Gigantic televisions broadcasting sports in every direction. And people. Everywhere. Barely a square-foot throughout the entire place, at least where we were sitting, that didn't have people.
We ordered our drinks and meals. I got out my laptop and input dates into our calendars. We focused on that and I was able to tune out the rest of the stimuli. But when our food came, I had my laptop away. I was able to eat, somewhat. The salad I ordered was OVERLY spicy, like on fire, spicy. And, like a domino effect, the sensory input started flooding its way into my brain. I ate the best I could.
But, the sound got louder, like someone was simply turning the volume dial every few minutes. The giant TVs invaded my visual system. I covertly covered my ears at first. Trying to block it out. My foot started tapping. I wanted to evaporate into thin air.
Faintly, I could hear Brent talking to me. He was asking me to go out to the car. He said something about my eyes...I shook my head no. I was not ready to wave the white flag of surrender, that I was unable to do that particular moment. That particular place. On that very night. I wanted to conquer it and be in control at that moment.
Eventually, I think it was something like the third time that I heard Brent tell me to "go outside and wait in the truck" while he paid the bill, I submitted. He had already taken the truck keys out of his pocket and put them on the table. I picked them up, grabbed my bags and left.
I know that the oodles of staff that were at the host area did not say anything to me. I was appreciative so that I didn't have to respond. I could just get outside, where my sensory system could calm down. Where I could catch my breath and yet feel on high alert as a man walked oddly close to my "bubble" and followed me into the large parking lot that was behind the restaurant. I spread Brent's keys as a makeshift weapon between my fingers and got to the truck. Unlocked. Got in and relocked the doors. And, I grabbed Jackson's blanket from the back seat to warm myself up.
A few minutes later, Brent was with me. He was in the truck and asking if I was okay. If I wanted to do something else. I asked if we could just go home. We sat together in a moment of quiet before he started the truck. Once in our house, he gave me a big hug. I apologized. He told me I didn't have to.
But, my neurology, my differences. THEY had affected our evening together. It's as though I have become a hermit in certain instances because it's way safer to live inside the confines of my own home than to put myself in harms way.
And, isn't it interesting that whenever we go out to meals with Jackson that we try to sit in the least crowded area of the restaurant, where it is the least assaulting on the auditory system and the brain. Often going before the dinner crowd hits, we joke that we are akin to the Early Birder's these days. We make these simple changes each and every time and I never once feel saddened at the changes that we have made to help Jackson to be authentically himself and to not have situations where the insurgence of stimuli cause moments of him eloping and/or needing to stim in dangerous ways so that he could just "be" there.
So why am I so hard on myself?
Why am I so resistant to feel the need to apologize for the way I have been made?
I guess I'm just not there...
yet.
Tuesday, October 20, 2015
Monday, September 28, 2015
On Meltdowns
Written Saturday:
There's this thing out there in the Spectumite world. It's called a meltdown. To some, it may look like a tantrum or a panic attack or even a seizure. And while all of those things are absolutely real, so is the meltdown.
Let's get this one thing out of the way before we go any further. A tantrum is not a meltdown. Now...just to be clear...repeat after me: A. Tantrum. IS NOT. A. Meltdown. A tantrum, often observed in toddlers and young children, is a common response to a desire not being met, such as receiving a desired toy or particular food. When that item is received, the crying, screaming, shouting, etc. ceases because that desire is met and the child is no longer in want of it. We've all seen the parent in the grocery store telling a child no to the impulse item in the checkout line. You've heard the wails and screams and then, when that parent says yes...the negative responses stop, nearly immediately.
However, meltdowns are VERY different in that they are the brains' response to having to process TOO MUCH stuff. Too much noise, too much emotion, too much to do, too much stress, too many people, too many voices...too much...too much...too much. I often think of the good ol' holiday favorite, The Grinch that Stole Christmas. (In recent years, I've speculated that the Grinch, himself, is autistic. Think on that a little.) Remember, how the Grinch complains about the Whos in Whoville and their "noise, noise, noise?" Meltdowns do not simply cease when a wished for item is granted. A meltdown may be preceded by a tantrum, but there's a lot more going on under the surface than it looks like.
I like to describe my sensory and emotional experience of autism as a bucket. As in, there is a specific amount, er, "threshold," if you will, that once met, I cannot undo without some work. Public place with crowds? There's some drips into the bucket. Unexpected change to event, faucet might have just been turned on half way. Missed meal, lost phone, and background noise that is like noise down a chalkboard is like a fire hose on full blast. So, all of my day-to-day activities fill this imaginary bucket that "the autistic side of my brain" as Jackson likes to say (keep in mind- he's 8 and believes that there IS just ONE part of his brain that causes him to be autistic), all those things are either drips, larger drops, a leaky faucet, or a fire hose into my bucket. Once my "water levels" start to reach the brim of the bucket, I begin to feel anxious and in the "Yellow Zone."* I've been with my partner long enough that he can see it, even in a crowded baseball arena with a child between us. He has described it as my pupils dilating, my eyes darting, a long stare and a rigid body. (These are what I look like prior to meltdown. Everyone is different!)
Sometimes, my body and my brain feels better when I am able to do some sensory activity like body brushing, drinking a cup of tea, using my calm box, or heavy work. I recently got a weighted blanket that has been fabulous for not only my sleep but also great for giving me deep pressure when I'm on the brink.
However, there are still dark moments where I cannot avoid a meltdown. When I cannot avoid the tears and the non-communicative moments. The impulse to lock myself away in a safe place and gently rock my body. There are moments when I feel such overload that my bucket is sloshing all over the place and I cannot control anything. It is in those moments that I feel my most vulnerable. Because any sound, any touch, any small thing can be another assault on my nervous system that can push me and my bucket all the way over.
Today was a meltdown day. I often refer to them in jest as "days I'd like to move to Australia."** It was a long morning with unexpected hiccups in my day. Rushing and trying to find a post office that was open while Jackson was at his Saturday morning therapy. Then, we stopped by a crowded co-op shop that I needed to purchase a specific item from. I was trying to juggle a phone call and could not focus because all I could hear was the noise around me. Jackson wanted nothing more than to go play on the playground across the street. Any other day, I would have loved to let him. But I needed to use the restroom. He was relentless in his requests. A woman who worked there...she saw me. And I say it like that because she asked if she could give me a quick tour around the facility, noting after we got away from the crowd at the register that she could tell I looked quite uncomfortable. She must have seen what Brent sees. God bless her. So, she got me some reprieve and when we returned back, the crowd was gone and I was able to check out in peace. Yet, it went on. Drips, drops, leaky faucets, showers and downpours into my bucket. Including a near-mishap with the garage door and my body. I had a moment of weakness. I shouted at Jackson. I went into the house, used the restroom and began to cry. The crying turned to non-stop tears. I made myself a lunch and tried to gulp it down. I got my blanket, wrapped myself in it. I tried to keep it from coming. I tried to meet those primal needs because I could feel that bucket beginning to tip like at a water park. And, it did.
I went to my room. Shut the door. Knelt on the floor with my blanket pushing its weight into my back. When my friend called, I auto replied that I couldn't talk. I texted her back telling her I was having a moment. She asked if she could help. Old me would have insisted I could handle it. I'm not so stubborn anymore. I asked if she'd mind helping with Jackson for a bit this afternoon. I felt like I needed some time for my brain to have a break.
Jackson must have known that the meltdown was upon me. (We can sense these things with each other.) Because a bit later, I heard him knock on the door and ask "Come in?" I told him "no." He shoved his little fingers under my door, which my body was stiffly against. "Hold my hand, Mama." So, we held fingers for a minute. "I'll be back," he said and a few seconds later, he knocked again and requested entrance. I moved my body and he opened the door. He put his Calm Bin down in front of me. Non-verbally offering it to me. He knelt beside me and wrapped his arms around me and gave me deep squeezes. I got his body brush out and began running it over my arms, legs, and body. I knew he was watching me. My head was telling me...you are the example, Sara. Be the example. He is watching you. You might want to just lay here and cry, but do the techniques. They work. My son, this little man in an eight-year-old body, sat silently with me. He must have noticed the calm start to wash over me- he said "Mama, I'm going to go play. But, Tiegie's gonna stay here with you. K?"
So, my brain has been reset now. Not to say the bucket goes back to empty like after a restful night's sleep. But, there's this weird sensation afterwards, a sense of calm that cannot be explained with words. I think of it as my brain doing a hard-restart, like the old-school Control + ALT + Delete when the dreaded blue screen of death occurred on my old PC. Or, like unplugging the cable box from the wall when it's not cooperating. Yeh. That's how my brain feels.
*Yellow Zone: Found in The Zones of Regulation by Leah M. Kuypers. We use this curriculum with Jackson at his occupational therapy to describe his emotional state and the expected zone of his activity.
There's this thing out there in the Spectumite world. It's called a meltdown. To some, it may look like a tantrum or a panic attack or even a seizure. And while all of those things are absolutely real, so is the meltdown.
Let's get this one thing out of the way before we go any further. A tantrum is not a meltdown. Now...just to be clear...repeat after me: A. Tantrum. IS NOT. A. Meltdown. A tantrum, often observed in toddlers and young children, is a common response to a desire not being met, such as receiving a desired toy or particular food. When that item is received, the crying, screaming, shouting, etc. ceases because that desire is met and the child is no longer in want of it. We've all seen the parent in the grocery store telling a child no to the impulse item in the checkout line. You've heard the wails and screams and then, when that parent says yes...the negative responses stop, nearly immediately.
However, meltdowns are VERY different in that they are the brains' response to having to process TOO MUCH stuff. Too much noise, too much emotion, too much to do, too much stress, too many people, too many voices...too much...too much...too much. I often think of the good ol' holiday favorite, The Grinch that Stole Christmas. (In recent years, I've speculated that the Grinch, himself, is autistic. Think on that a little.) Remember, how the Grinch complains about the Whos in Whoville and their "noise, noise, noise?" Meltdowns do not simply cease when a wished for item is granted. A meltdown may be preceded by a tantrum, but there's a lot more going on under the surface than it looks like.
I like to describe my sensory and emotional experience of autism as a bucket. As in, there is a specific amount, er, "threshold," if you will, that once met, I cannot undo without some work. Public place with crowds? There's some drips into the bucket. Unexpected change to event, faucet might have just been turned on half way. Missed meal, lost phone, and background noise that is like noise down a chalkboard is like a fire hose on full blast. So, all of my day-to-day activities fill this imaginary bucket that "the autistic side of my brain" as Jackson likes to say (keep in mind- he's 8 and believes that there IS just ONE part of his brain that causes him to be autistic), all those things are either drips, larger drops, a leaky faucet, or a fire hose into my bucket. Once my "water levels" start to reach the brim of the bucket, I begin to feel anxious and in the "Yellow Zone."* I've been with my partner long enough that he can see it, even in a crowded baseball arena with a child between us. He has described it as my pupils dilating, my eyes darting, a long stare and a rigid body. (These are what I look like prior to meltdown. Everyone is different!)
Sometimes, my body and my brain feels better when I am able to do some sensory activity like body brushing, drinking a cup of tea, using my calm box, or heavy work. I recently got a weighted blanket that has been fabulous for not only my sleep but also great for giving me deep pressure when I'm on the brink.
However, there are still dark moments where I cannot avoid a meltdown. When I cannot avoid the tears and the non-communicative moments. The impulse to lock myself away in a safe place and gently rock my body. There are moments when I feel such overload that my bucket is sloshing all over the place and I cannot control anything. It is in those moments that I feel my most vulnerable. Because any sound, any touch, any small thing can be another assault on my nervous system that can push me and my bucket all the way over.
Today was a meltdown day. I often refer to them in jest as "days I'd like to move to Australia."** It was a long morning with unexpected hiccups in my day. Rushing and trying to find a post office that was open while Jackson was at his Saturday morning therapy. Then, we stopped by a crowded co-op shop that I needed to purchase a specific item from. I was trying to juggle a phone call and could not focus because all I could hear was the noise around me. Jackson wanted nothing more than to go play on the playground across the street. Any other day, I would have loved to let him. But I needed to use the restroom. He was relentless in his requests. A woman who worked there...she saw me. And I say it like that because she asked if she could give me a quick tour around the facility, noting after we got away from the crowd at the register that she could tell I looked quite uncomfortable. She must have seen what Brent sees. God bless her. So, she got me some reprieve and when we returned back, the crowd was gone and I was able to check out in peace. Yet, it went on. Drips, drops, leaky faucets, showers and downpours into my bucket. Including a near-mishap with the garage door and my body. I had a moment of weakness. I shouted at Jackson. I went into the house, used the restroom and began to cry. The crying turned to non-stop tears. I made myself a lunch and tried to gulp it down. I got my blanket, wrapped myself in it. I tried to keep it from coming. I tried to meet those primal needs because I could feel that bucket beginning to tip like at a water park. And, it did.
I went to my room. Shut the door. Knelt on the floor with my blanket pushing its weight into my back. When my friend called, I auto replied that I couldn't talk. I texted her back telling her I was having a moment. She asked if she could help. Old me would have insisted I could handle it. I'm not so stubborn anymore. I asked if she'd mind helping with Jackson for a bit this afternoon. I felt like I needed some time for my brain to have a break.
Jackson must have known that the meltdown was upon me. (We can sense these things with each other.) Because a bit later, I heard him knock on the door and ask "Come in?" I told him "no." He shoved his little fingers under my door, which my body was stiffly against. "Hold my hand, Mama." So, we held fingers for a minute. "I'll be back," he said and a few seconds later, he knocked again and requested entrance. I moved my body and he opened the door. He put his Calm Bin down in front of me. Non-verbally offering it to me. He knelt beside me and wrapped his arms around me and gave me deep squeezes. I got his body brush out and began running it over my arms, legs, and body. I knew he was watching me. My head was telling me...you are the example, Sara. Be the example. He is watching you. You might want to just lay here and cry, but do the techniques. They work. My son, this little man in an eight-year-old body, sat silently with me. He must have noticed the calm start to wash over me- he said "Mama, I'm going to go play. But, Tiegie's gonna stay here with you. K?"
So, my brain has been reset now. Not to say the bucket goes back to empty like after a restful night's sleep. But, there's this weird sensation afterwards, a sense of calm that cannot be explained with words. I think of it as my brain doing a hard-restart, like the old-school Control + ALT + Delete when the dreaded blue screen of death occurred on my old PC. Or, like unplugging the cable box from the wall when it's not cooperating. Yeh. That's how my brain feels.
*Yellow Zone: Found in The Zones of Regulation by Leah M. Kuypers. We use this curriculum with Jackson at his occupational therapy to describe his emotional state and the expected zone of his activity.
**Australia: Nothing against the country. I'm referring to Alexander and the Terrible, Horrible, No Good, Very Bad Day by Judith Viorst. Alexander states he thinks he'll move to Australia every time he explains another negative aspect of his day.
Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for his feedback and make necessary changes to make this place be a safe place for him too.
Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for his feedback and make necessary changes to make this place be a safe place for him too.
Sunday, August 23, 2015
On the First Week of Third Grade
So, it is Sunday. The boys are sleeping. And it seems like the perfect time for some reflection on this week. And, I cannot possibly share my thoughts with you without you knowing the narrative. Because, it is in those very moments that you will be able to glean understanding of my take-aways, my starred thoughts.*
Monday: With great anticipation, we visited Jackson's new school. He met both of his teachers and had the opportunity to get to know his homeroom teacher one-on-one. With my guidance, Jackson went to the "All about Me" poster Mrs. H** and returned with three questions about her like I had instructed. Nervous Mama that I am, we discussed plans for his noise-canceling headphones, where his seat is, etc. until we have our Transfer ARD meeting. I felt comfortable knowing that Mrs. H has her teaching certificates in special education in addition to her early education degree. Seems like a bonus!
Wednesday: First Day of School! Groggy eyed, Jackson made his way through his morning routine earlier than previous years. He had the "normal" first day of school breakfast: blueberry muffins. We took the requisite "first day of school" pictures and we were off. Almost there, I asked him how he was feeling...one word came from the back seat. "Happy."
At pickup, I was braced to hear the usual waterfall of disappointments, hurts and emotional release of the day. To my surprise, Jackson practically bounced into the car. "Mama, that was the best day of school ever! I got the most 'good jobs' in one day of all the days I've ever been in school!" He was literally beaming, with a smile from ear to ear. "AND MOM, we get thirty minutes of recess, that's twice as much as last year!" Who could argue with that? Exercise and play are essential parts of learning! I asked him how it was with the really loud thunderstorms that we had throughout the day, he explained he asked to get his headphones, put them on and not a single person made fun of him.
Driving home, we chatted about our day. I asked him if he had to talk about himself in his classes. He explained that Ms. A** asked for them to tell their name, something about them, and what they look most forward to this school year. So, I asked what he said. The most unexpected, honest answer came from my child. "I said, 'Hi, I'm Jackson. I'm autistic. I'm excited for PE and lunch. Mama, everyone else said they were excited for lunch, so I said that also to make everyone laugh. They did." My mind reeled. I asked, "Wait. Jackson, you just stood up in front of your class and told them that? That you're autistic?" He said defensively, "Well, no, Mama. I didn't just stand up. I waited for my turn." Oy. The laughter-inducing Literal Leonard*** strikes again. I laughed so hard, partially because he misunderstood why I was asking, thinking that I was implying that he, at random, spouted out facts about himself out of turn. But, more so, I laughed because my heart was exploding in his comfort to share one of the pieces that make him...SO authentically Jackson...It was laid out on the table. By his own admission, on the FIRST day of school. Ironically, this piece of him was not acknowledged or even spoken of in his previous school. It was almost as though, if they spoke the word autism, it would open Pandora's Box.
Thursday: Thunderstorms continued and raged through the morning. Jackson was overwhelmed by the noise and very anxious for the 'next one.' We tried to keep the routine the same as the previous day, but he was very fixated on the storms. When we left the house, Jackson attempted to run back into the house when lightning lit up the sky. We drove to school through monsoon conditions. Both umbrellas were not in the car, so I stopped by the convenience store near the school. No umbrellas. But, I found a tarp. Yup. That happened. I parked and walked Jackson into the school with us both partially protected by a blue tarp. (We must have been a sight.) I walked him to his classroom. My fear was that if there was a clap of thunder or the lights were to go out, that he would possibly elope into an empty classroom or someplace that might seem like shelter from the storm. Furthermore, since he was there before class started, I knew he would need to go to the gym, which is in a separate building on the campus. And that there are currently no fences. This Mama was nervous for all that might happen to a frightened boy who is trying so hard to keep himself together during this nasty storm. I told Mrs. H my concerns; she asked Jackson if she could help him and have him stay with her. Leaving the school, I requested the Special Needs Coordinator to contact me ASAP, which she did less than an hour later, after having checked on Jackson in his classroom. We discussed a plan for the day until our ARD occurs. Peace. Reassurance. Understanding from the people I am entrusting my most important person in the world with.
Much like the day previous, there was the same after school reaction. "Best second day ever, Mama!" Except, he explained that in math, everyone received the same number of uni-fix blocks and got to BUILD with them. I didn't quite understand and prodded for more details. "We weren't allowed to do that last year, Mom. We had to only use them for counting. Never allowed to build with them. Mrs. H actually told us to build with them!" They all got to see what they could make with the blocks- creativity, individuality, and learning encouraged in a classroom? Happiness overfloweth.
Friday: Same as the previous days, except this day..."This was the best first week of school ever!" And, he had received an invitation to one of his classmates' birthday party in two weeks. When I asked him what game we thought we should give her, he said, "Well, on the first day of school, she said she was most excited for math. So I think it should be a math game." Hmmm. Well done, son. Well done, indeed.
--------------------------------------------------------------------------------------------------------
Sometimes, this ride we've been on with our sweet, beloved Jackson has been so overwrought with the negatives. What he struggles to do. How we struggle to help him. The meltdowns and anger. The sensory overload and stimming and anxiety. It is incredibly easy to focus on the challenges, especially when you feel like you're being T-boned by a Mack Truck at every turn. Especially when the very people you've entrusted him with for his education have been so focused on his "smartness" that they've completely missed the rest of him.
But this week, it has reaffirmed that my Mama instincts were dead-on-balls accurate (life needs more "My Cousin Vinny" references). My feelings that given the opportunity, Jackson could have the chance to shine in the complexity of all the pieces that make him uniquely Jackson, including his autism, proved true.
And then, he was so incredibly brave to put out there, in front of his teacher and his classmates, that he is autistic. That moment quite possibly might be one of my proudest Mama moments to this day. Because he is not ashamed. He feels safe to tell others what makes him different from them. My son just put it out there in a way that I have been struggling to do for the past year and a half. He is owning it not because it defines him, but because it is a vital part of who he is. How legitimately awesome of him.
So, while I feel like I spent this summer holding my breath in fear of the unknown of this new school- new policies, longer commute, etc. I have finally been able to exhale, possibly just now. As I've put all of this in writing. Don't get me wrong, I know that just like any other school, there will be hiccups and struggles that we will face. I'm not expecting this to be all sunshine and unicorns tooting rainbows, but man...at least I will not have to spend all of those meetings, fighting for them to SEE my son, in his entirety. That is already done. And it is only the first week of school.
*"Starred Thought" was the great George Parks' way of saying pay attention; something important is coming; commit this to memory. I had the honor of attending drum major camp with him at UMASS my senior year of high school. Any time that I'm reading, writing, taking notes, if it has a star next to it, I know it's important.
**Not their real names; changed for their privacy.
***Literal Leonard is a fictitious chap that Jackson's Occupational Therapist refers to when her ASD kiddos are taking something too literally. There is a poster of him and "Taco Head" on the wall in one of her classrooms.
Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for his feedback and make necessary changes to make this place be a safe place for him too.
Monday: With great anticipation, we visited Jackson's new school. He met both of his teachers and had the opportunity to get to know his homeroom teacher one-on-one. With my guidance, Jackson went to the "All about Me" poster Mrs. H** and returned with three questions about her like I had instructed. Nervous Mama that I am, we discussed plans for his noise-canceling headphones, where his seat is, etc. until we have our Transfer ARD meeting. I felt comfortable knowing that Mrs. H has her teaching certificates in special education in addition to her early education degree. Seems like a bonus!
Wednesday: First Day of School! Groggy eyed, Jackson made his way through his morning routine earlier than previous years. He had the "normal" first day of school breakfast: blueberry muffins. We took the requisite "first day of school" pictures and we were off. Almost there, I asked him how he was feeling...one word came from the back seat. "Happy."
At pickup, I was braced to hear the usual waterfall of disappointments, hurts and emotional release of the day. To my surprise, Jackson practically bounced into the car. "Mama, that was the best day of school ever! I got the most 'good jobs' in one day of all the days I've ever been in school!" He was literally beaming, with a smile from ear to ear. "AND MOM, we get thirty minutes of recess, that's twice as much as last year!" Who could argue with that? Exercise and play are essential parts of learning! I asked him how it was with the really loud thunderstorms that we had throughout the day, he explained he asked to get his headphones, put them on and not a single person made fun of him.
Driving home, we chatted about our day. I asked him if he had to talk about himself in his classes. He explained that Ms. A** asked for them to tell their name, something about them, and what they look most forward to this school year. So, I asked what he said. The most unexpected, honest answer came from my child. "I said, 'Hi, I'm Jackson. I'm autistic. I'm excited for PE and lunch. Mama, everyone else said they were excited for lunch, so I said that also to make everyone laugh. They did." My mind reeled. I asked, "Wait. Jackson, you just stood up in front of your class and told them that? That you're autistic?" He said defensively, "Well, no, Mama. I didn't just stand up. I waited for my turn." Oy. The laughter-inducing Literal Leonard*** strikes again. I laughed so hard, partially because he misunderstood why I was asking, thinking that I was implying that he, at random, spouted out facts about himself out of turn. But, more so, I laughed because my heart was exploding in his comfort to share one of the pieces that make him...SO authentically Jackson...It was laid out on the table. By his own admission, on the FIRST day of school. Ironically, this piece of him was not acknowledged or even spoken of in his previous school. It was almost as though, if they spoke the word autism, it would open Pandora's Box.
Thursday: Thunderstorms continued and raged through the morning. Jackson was overwhelmed by the noise and very anxious for the 'next one.' We tried to keep the routine the same as the previous day, but he was very fixated on the storms. When we left the house, Jackson attempted to run back into the house when lightning lit up the sky. We drove to school through monsoon conditions. Both umbrellas were not in the car, so I stopped by the convenience store near the school. No umbrellas. But, I found a tarp. Yup. That happened. I parked and walked Jackson into the school with us both partially protected by a blue tarp. (We must have been a sight.) I walked him to his classroom. My fear was that if there was a clap of thunder or the lights were to go out, that he would possibly elope into an empty classroom or someplace that might seem like shelter from the storm. Furthermore, since he was there before class started, I knew he would need to go to the gym, which is in a separate building on the campus. And that there are currently no fences. This Mama was nervous for all that might happen to a frightened boy who is trying so hard to keep himself together during this nasty storm. I told Mrs. H my concerns; she asked Jackson if she could help him and have him stay with her. Leaving the school, I requested the Special Needs Coordinator to contact me ASAP, which she did less than an hour later, after having checked on Jackson in his classroom. We discussed a plan for the day until our ARD occurs. Peace. Reassurance. Understanding from the people I am entrusting my most important person in the world with.
Much like the day previous, there was the same after school reaction. "Best second day ever, Mama!" Except, he explained that in math, everyone received the same number of uni-fix blocks and got to BUILD with them. I didn't quite understand and prodded for more details. "We weren't allowed to do that last year, Mom. We had to only use them for counting. Never allowed to build with them. Mrs. H actually told us to build with them!" They all got to see what they could make with the blocks- creativity, individuality, and learning encouraged in a classroom? Happiness overfloweth.
Friday: Same as the previous days, except this day..."This was the best first week of school ever!" And, he had received an invitation to one of his classmates' birthday party in two weeks. When I asked him what game we thought we should give her, he said, "Well, on the first day of school, she said she was most excited for math. So I think it should be a math game." Hmmm. Well done, son. Well done, indeed.
--------------------------------------------------------------------------------------------------------
Sometimes, this ride we've been on with our sweet, beloved Jackson has been so overwrought with the negatives. What he struggles to do. How we struggle to help him. The meltdowns and anger. The sensory overload and stimming and anxiety. It is incredibly easy to focus on the challenges, especially when you feel like you're being T-boned by a Mack Truck at every turn. Especially when the very people you've entrusted him with for his education have been so focused on his "smartness" that they've completely missed the rest of him.
But this week, it has reaffirmed that my Mama instincts were dead-on-balls accurate (life needs more "My Cousin Vinny" references). My feelings that given the opportunity, Jackson could have the chance to shine in the complexity of all the pieces that make him uniquely Jackson, including his autism, proved true.
And then, he was so incredibly brave to put out there, in front of his teacher and his classmates, that he is autistic. That moment quite possibly might be one of my proudest Mama moments to this day. Because he is not ashamed. He feels safe to tell others what makes him different from them. My son just put it out there in a way that I have been struggling to do for the past year and a half. He is owning it not because it defines him, but because it is a vital part of who he is. How legitimately awesome of him.
So, while I feel like I spent this summer holding my breath in fear of the unknown of this new school- new policies, longer commute, etc. I have finally been able to exhale, possibly just now. As I've put all of this in writing. Don't get me wrong, I know that just like any other school, there will be hiccups and struggles that we will face. I'm not expecting this to be all sunshine and unicorns tooting rainbows, but man...at least I will not have to spend all of those meetings, fighting for them to SEE my son, in his entirety. That is already done. And it is only the first week of school.
*"Starred Thought" was the great George Parks' way of saying pay attention; something important is coming; commit this to memory. I had the honor of attending drum major camp with him at UMASS my senior year of high school. Any time that I'm reading, writing, taking notes, if it has a star next to it, I know it's important.
**Not their real names; changed for their privacy.
***Literal Leonard is a fictitious chap that Jackson's Occupational Therapist refers to when her ASD kiddos are taking something too literally. There is a poster of him and "Taco Head" on the wall in one of her classrooms.
Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for his feedback and make necessary changes to make this place be a safe place for him too.
Wednesday, August 12, 2015
On "Normal"
One thing that I have found in my time being a parent and person on the spectrum is that there is no "normal." We should take that word right out of the vernacular of special needs, autism and the spectrum right now.
I also struggle with the diagnostic codes of "low" and "high" functioning. Yes, they are useful for doctors and therapists to know what they're walking into to begin with, but they cannot define any one person's experience.
Recently, we decided to look into different schooling options for Jackson's next year of school. We had to explain our reasons why without going into too much detail regarding our struggles in IEP meetings. When discussing with Jackson that his behavior at school was not what his teachers and the staff expected to see as "autistic" behaviors, he asked me to explain. I clarified with one sentence: "Jackson, you do not look autistic to them." His mind reeled in ways that I didn't expect: "But, Mama. What does autism LOOOOOOK like? That's so dumb...I'm 'artistic.'" (Note: Jackson means "autistic" but struggles to pronounce it correctly; it comes out as "artistic" often.)
I went onto explain that there are behaviors that his teachers and support staff (Speech/Lang. Pathologist, Diagnostician, etc.) are looking for when they observe and interact with him. More specifically, the obvious signs. Hand flapping. Verbally ticking. Not interacting socially. Little/no eye contact. Which, when they look for those, none are visible...because he's not in area of the spectrum.
He hums/sings/plays on repeat songs over and over, specifically Star Wars themes and battle tunes. At times, friends tell him his behavior is "annoying" directly in front of me. (Which, I do not love, but when I explain it to these friends' parents, if these interactions do not occur organically, we are not able to help him appropriately respond.) He is verbal...to the point that I sometimes wish that he wasn't as verbal. He will incessantly drone on about his recent obsessions. (Which, let's be real here. An 8 year old boy's obsession with the finer points of Star Wars artillery can only be attended to by one person for so long.) He makes eye contact...but only sometimes. When he knows the person. When he is talking. Otherwise, he'll make fleeting eye contact, which is a learned behavior, because I taught him to do that starting when he was two years old by telling him to "find a freckle" on my face so that he would at least just look in my direction. Yes, he plays with other kids. But what happens when they try to change the rules to a game or behave in ways that are unexpected? Shutdowns and meltdowns that can last for hours that I will respectfully withhold from you, the reader, to protect my family's most difficult and challenging moments. And the list goes on...
I explained to Jackson that at this school (that will, in fact be his school next week), he will not have to hide in the bathroom to practice his Occupational Therapy techniques or to get away from the noisiness of his class. During our visit there, a child asked a staffer there for his "noise canceling headphones."* At which time, that staffer told him to go to the office and ask for them to retrieve them from the special needs teacher's office. Jackson's eyes lit up and he looked at me with a small smile. I knew what that was about: when I told him during our original conversation that many kids wear them at this school, not just kiddos with autism, he exclaimed "So, Mama! That means that I'll be able to wear mine without anyone making fun of me?" I nodded. He continued, "Mama, at this school, it sounds like I'll just be able to be me." Insert smile. And, my heart nearly melted. Because, as a parent, isn't it exactly what we want? It is for me. One of my biggest goals in life is to raise Jackson to live authentically as himself.
The thing that I repeatedly toil over in my mind. The piece of that interaction that I cannot get past, that I fought with at the final ARD** meetings at his previous school is this: how much of my child's brain power was being used each and every day to just maintain this appearance of normalcy? How much of his focus was on trying to be someone else so that he wouldn't be made fun of by his classmates (although it still occurred)? And, just how much of that super intelligent brain of his could have been working on more educational pursuits than this job of holding himself together? And, at this new school, there is the opportunity for a perceived normalcy for Jackson, because there are other children who are able to access the things that they need to be able to succeed in a safe environment.
Back to the main point. This "normal-ness" that we assume is there. This "level" (and I mean that to be emphasized to the one millionth degree) it is perceived in snapshots of his life. Of my life. Of ANY one person on the spectrum. Because at any one moment, Jackson or myself...we can look "high functioning," (perhaps a version of less-than-Autistic). We can fit right in. But, when that sensory and social threshold has been met, which is usually at the end of our days, when we are at our worst, we might appear to be "low functioning."
I urge you to look into the lives of persons who were assumed to be "lower" functioning in their early Autistic lives and see where they have been able to accomplish. Look up Temple Grandin, Jacob Barnett, John Edler Robinson. Appearances almost always are deceiving.
*We own four pairs of these; literally, so we do not leave home without them. There is a pair in each of our vehicles, one in Jackson's room for overnight thunderstorms, and a pair recently purchased to be left at school.
**In Texas, the name for an IEP meeting is an "ARD" which stands for "Assessment, Review and Dismissal." We were told that this is the case because those are always the goals for special needs services within the public school system.
Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for his feedback and make necessary changes to make this place be a safe place for him too.
I also struggle with the diagnostic codes of "low" and "high" functioning. Yes, they are useful for doctors and therapists to know what they're walking into to begin with, but they cannot define any one person's experience.
Recently, we decided to look into different schooling options for Jackson's next year of school. We had to explain our reasons why without going into too much detail regarding our struggles in IEP meetings. When discussing with Jackson that his behavior at school was not what his teachers and the staff expected to see as "autistic" behaviors, he asked me to explain. I clarified with one sentence: "Jackson, you do not look autistic to them." His mind reeled in ways that I didn't expect: "But, Mama. What does autism LOOOOOOK like? That's so dumb...I'm 'artistic.'" (Note: Jackson means "autistic" but struggles to pronounce it correctly; it comes out as "artistic" often.)
I went onto explain that there are behaviors that his teachers and support staff (Speech/Lang. Pathologist, Diagnostician, etc.) are looking for when they observe and interact with him. More specifically, the obvious signs. Hand flapping. Verbally ticking. Not interacting socially. Little/no eye contact. Which, when they look for those, none are visible...because he's not in area of the spectrum.
He hums/sings/plays on repeat songs over and over, specifically Star Wars themes and battle tunes. At times, friends tell him his behavior is "annoying" directly in front of me. (Which, I do not love, but when I explain it to these friends' parents, if these interactions do not occur organically, we are not able to help him appropriately respond.) He is verbal...to the point that I sometimes wish that he wasn't as verbal. He will incessantly drone on about his recent obsessions. (Which, let's be real here. An 8 year old boy's obsession with the finer points of Star Wars artillery can only be attended to by one person for so long.) He makes eye contact...but only sometimes. When he knows the person. When he is talking. Otherwise, he'll make fleeting eye contact, which is a learned behavior, because I taught him to do that starting when he was two years old by telling him to "find a freckle" on my face so that he would at least just look in my direction. Yes, he plays with other kids. But what happens when they try to change the rules to a game or behave in ways that are unexpected? Shutdowns and meltdowns that can last for hours that I will respectfully withhold from you, the reader, to protect my family's most difficult and challenging moments. And the list goes on...
I explained to Jackson that at this school (that will, in fact be his school next week), he will not have to hide in the bathroom to practice his Occupational Therapy techniques or to get away from the noisiness of his class. During our visit there, a child asked a staffer there for his "noise canceling headphones."* At which time, that staffer told him to go to the office and ask for them to retrieve them from the special needs teacher's office. Jackson's eyes lit up and he looked at me with a small smile. I knew what that was about: when I told him during our original conversation that many kids wear them at this school, not just kiddos with autism, he exclaimed "So, Mama! That means that I'll be able to wear mine without anyone making fun of me?" I nodded. He continued, "Mama, at this school, it sounds like I'll just be able to be me." Insert smile. And, my heart nearly melted. Because, as a parent, isn't it exactly what we want? It is for me. One of my biggest goals in life is to raise Jackson to live authentically as himself.
The thing that I repeatedly toil over in my mind. The piece of that interaction that I cannot get past, that I fought with at the final ARD** meetings at his previous school is this: how much of my child's brain power was being used each and every day to just maintain this appearance of normalcy? How much of his focus was on trying to be someone else so that he wouldn't be made fun of by his classmates (although it still occurred)? And, just how much of that super intelligent brain of his could have been working on more educational pursuits than this job of holding himself together? And, at this new school, there is the opportunity for a perceived normalcy for Jackson, because there are other children who are able to access the things that they need to be able to succeed in a safe environment.
Back to the main point. This "normal-ness" that we assume is there. This "level" (and I mean that to be emphasized to the one millionth degree) it is perceived in snapshots of his life. Of my life. Of ANY one person on the spectrum. Because at any one moment, Jackson or myself...we can look "high functioning," (perhaps a version of less-than-Autistic). We can fit right in. But, when that sensory and social threshold has been met, which is usually at the end of our days, when we are at our worst, we might appear to be "low functioning."
I urge you to look into the lives of persons who were assumed to be "lower" functioning in their early Autistic lives and see where they have been able to accomplish. Look up Temple Grandin, Jacob Barnett, John Edler Robinson. Appearances almost always are deceiving.
*We own four pairs of these; literally, so we do not leave home without them. There is a pair in each of our vehicles, one in Jackson's room for overnight thunderstorms, and a pair recently purchased to be left at school.
**In Texas, the name for an IEP meeting is an "ARD" which stands for "Assessment, Review and Dismissal." We were told that this is the case because those are always the goals for special needs services within the public school system.
Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for his feedback and make necessary changes to make this place be a safe place for him too.
Saturday, July 25, 2015
On Appearances
I wish I had a dollar for every time I have heard, ”He doesn’t look autistic," "he looks normal,” and “oh my kid does that, it’s normal”. Such innocent throw away comments that come from a good place and are usually meant to support or make me feel better. Don’t get me wrong, I don’t blame the deliverer in any way but they do stir a torrent of emotions in me. After these or similar comments, I usually have an overwhelming need to explain all the difficulties Kerry and I face on a day-to-day basis. This defensive response is then directly followed by a feeling of guilt because I quickly think of some of Jesse’s ASD affected friends and how much harder their families have it, which in turn leads me to be thankful for what I actually have. This parenting gig is a roller coaster of feelings that truly never gets easier to ride. -Kelly, Jesse's Mum: Autism Undressed blog that can be found here
Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for feedback and make necessary changes to make this place be a safe place for him too.
Every...damned...day.
I think that this is the type of "don't know what to say so just input something that sounds appropriate" response like when someone goes to a funeral and says "I'm sorry" to the family of the deceased. My brain never computed that and, well, I wanted to punch someone or something every single time a well-wisher said that to me after my grandparents died. I hated that expression; it was absolutely useless and well, it didn't make ME feel any better, so what then do I say? Thank you?
Well, let's have some fun with this and take it even further: when someone says to me "Jackson doesn't look/behave/(fill in the blank here) like he's autistic" OR even more PC "your son does not appear to be a person with autism" (because PERSON first language is SOOOOOO important, unless you're living it. Yes, I DO say that I AM autistic. My son is autistic. Because it is just a much a part of us as having a brain or lungs or blood in our veins. I do not need to say I am a person with autism- why waste time with all those extra syllables. Okay, another blog post on that one, maybe.) Back to the story...You say our outward physical appearance doesn't match "autism" and my response will not be a good one. Um...say that to me on a bad day and I might tear you to shreds. Most days, I'll blankly smile and mutter something along the lines about how much work I've been doing with him since he was a toddler. I might tell you a few cute stories to help you to understand, but please know, the impulse to throw something is on a low boil. (I blame this on my ancestry...Us hot-blooded Sicilians have been known to throw a table or two...so maybe it's just my roots.)
And it's like Jackson so eloquently said recently, "Mama, what exactly do they think autism looks like? I have autism. I look like me." Exactly buddy. Autism occurs in our brains. Persons who are non-verbal, or have tics, or need to stim may be more what main-stream media has chosen to personify as autistic in the past, but we certainly do know that autism is a SPECTRUM of all sorts of people who certainly do not all have a cookie-cutter outside. So, there is no "look" to autism.
Don't get me wrong. I get it that people are incredibly uncomfortable and need to relieve pressure from them. Like the well-meaning former friend of mine who told me "Well, I know someone...my cousin's child is a selectively mute child with autism, so it could be SO much worse." It ALWAYS can be much worse. But, when you're living it and staring at your child who no longer wants to do the things he previously loved and no longer wants to have his friends around and suddenly lines matchbox cars up for hours and doesn't want to go to the pool...perspective is the last thing you need force fed down your throat. Comfort and love is needed instead.
Take it from me. Please, don't assume that just because someone "looks" whatever our society deems to be 'normal,' please DO NOT tell them that you cannot believe that they are suffering from X, Y, or Z. It could end your friendship, cause you to miss out on some incredible people or worse, something could be thrown at you. Around me, it might just be something you sit around to play games or to eat. (Note: To this day, I do not have any recollections of table-flipping, but the urge is there from time to time. ;)
Here's something you CAN do: listen. Don't half listen, trying to find a way to make the person feel better. Because, you most likely cannot. But your listening will do them a world of good. Especially when it's not coated with a sugary sweet BS statement that is oozing with platitudes and hurtfulness. And, offer a hug. Or a warm meal. Or a night off. Think of the things that you CAN do...they are plentiful. Most importantly, as soon as "I know someone" even starts to come to the tip of your tongue, swallow it. It might just save your friendship or your table.
Thursday, July 23, 2015
On Labels
There seems to be a giant hang up on "labels" with the diagnosis process.
Here are my thoughts on this...
If my six-year-old son couldn't function through a meal at a restaurant without banging his head into a wall or couldn't safely navigate a diner to get to the restroom without getting second degree burns, he needed more help than we, as his parents, were able to provide him. Regardless of what label was being placed upon him. Regardless of which forms of employment such diagnostic tests and labels might keep him from as an adult.
Did it all mean anything if I wasn't able to help him navigate his childhood and adolescence? Would I have been doing the best job I could as his mother by ignoring all of the issues that had been compiling since infancy, especially since they were imploding on our family? No. I owed him way more than to fly under a label radar. I owed him to get the best help and the most opportunities for success as a human.
And what about myself? Being diagnosed at age 32...my own therapist asked me what good "just another diagnosis" would do for me. She wanted to know why I would readily subject myself to that. Simply put, I felt like it would give me so much more than it could take away from my life. And it has.
I am a strong believer in education- specifically in self-education. Often times, doctors find me obnoxious at best because I know a significant amount of information regarding many of my previous illnesses- usually more than they do. There has been a "Munchausen" or two thrown around at times. But, this is just because once I've been diagnosed, I want to know how I can best navigate and make myself the best, healthiest me I can.
My diagnosis of autism is no different. I have read books, watched movies, attended conferences. I have plunged myself into this world of a "label." The more that I have learned, the more I have been able to have a better self-awareness of my childhood, many memories and even my relationships. Without the testing, without the "label," I would still be wondering what is wrong with me? and why am I so broken? instead of: This is how my brain functions; I need some time to recover from all of this sensory overload; I cannot verbalize my emotions right now.
So, so many people get hung up on the label. Neurotypicals (non-Spectrum folks), especially parents of children who are in the process of possibly getting diagnosed, worry about the label. The label. Goodness, THE LABEL! But, here's the thing, whether that person is three, six or thirty...there will always be this underlying difference. That person will ALWAYS FEEL it. So, the label that society places on it and the implications that it gives...well, it doesn't change the insides of that person on the spectrum. With or without the words, our brains FUNCTION differently.
End. Of. Story.
Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for feedback and make necessary changes to make this place be a safe place for him too.
Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for feedback and make necessary changes to make this place be a safe place for him too.
Wednesday, July 22, 2015
On Autism
It was over a year ago in May. Brent and I went together to see the doctor who had run hours and hours of tests on me. And together, we faced her...awaiting the results.
"Without a doubt, you have all of the traits of a person with high functioning autism, Sara," the doctor said. For a moment, I was shocked. Then, a wave of relief overtook me.
We discussed the other diagnoses that had been assigned to me years before, ones that clung to me like a ball and chain around my ankle: OCD, depression, anxiety, PTSD. She explained that when other doctors had seen "OCD" they didn't understand that I was rigidly following rules that my employment had depended upon when I worked in childcare and as a short order cook. Hand washing was a requirement. The depression and anxiety: those were situational and often followed times of change and transition that persons with autism struggle with. And well, the PTSD was situational as well. I had since made strides to overcome the issues that surrounded that.
So, autism. I was no foreigner to the word or the diagnosis. Six months earlier, my beautiful son was diagnosed himself. And if it wasn't for that, I wouldn't have ever had the inkling to get myself tested.
The similarities were uncanny...the need for certain sensory input: soft blankets, soft clothing, tight hugs; the avoidance of loud noises, crowds, etc; the awkward feeling when no one seems to understand what you're trying to say because you cannot make the words in your brain match the ones coming out of your mouth. And, this annoying "but they LOOK so normal" statement that follows persons who are different on the inside but don't have a glaring "look" of being differently-abled on the outside.
So, well. High functioning autism. Asperger's, it would have been known as before the powers that be changed the DSM. High intellect, need for routine and dislike of change, quirky, socially awkward.
The running joke in our house is that "I am Sheldon Cooper." If you've seen the Big Bang Theory, you know what I'm talking about. There have been so many episodes that Brent and I have watched together and looked at each other with this ever knowing glance of "truth."
And here I am, Same Sara. I'm honored for you to join me in this journey as I have officially just came out: I am autistic; I am learning to embrace it just as I encourage Jackson to do the same everyday.
Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for feedback and make necessary changes to make this place be a safe place for him too.
"Without a doubt, you have all of the traits of a person with high functioning autism, Sara," the doctor said. For a moment, I was shocked. Then, a wave of relief overtook me.
We discussed the other diagnoses that had been assigned to me years before, ones that clung to me like a ball and chain around my ankle: OCD, depression, anxiety, PTSD. She explained that when other doctors had seen "OCD" they didn't understand that I was rigidly following rules that my employment had depended upon when I worked in childcare and as a short order cook. Hand washing was a requirement. The depression and anxiety: those were situational and often followed times of change and transition that persons with autism struggle with. And well, the PTSD was situational as well. I had since made strides to overcome the issues that surrounded that.
So, autism. I was no foreigner to the word or the diagnosis. Six months earlier, my beautiful son was diagnosed himself. And if it wasn't for that, I wouldn't have ever had the inkling to get myself tested.
The similarities were uncanny...the need for certain sensory input: soft blankets, soft clothing, tight hugs; the avoidance of loud noises, crowds, etc; the awkward feeling when no one seems to understand what you're trying to say because you cannot make the words in your brain match the ones coming out of your mouth. And, this annoying "but they LOOK so normal" statement that follows persons who are different on the inside but don't have a glaring "look" of being differently-abled on the outside.
So, well. High functioning autism. Asperger's, it would have been known as before the powers that be changed the DSM. High intellect, need for routine and dislike of change, quirky, socially awkward.
The running joke in our house is that "I am Sheldon Cooper." If you've seen the Big Bang Theory, you know what I'm talking about. There have been so many episodes that Brent and I have watched together and looked at each other with this ever knowing glance of "truth."
And here I am, Same Sara. I'm honored for you to join me in this journey as I have officially just came out: I am autistic; I am learning to embrace it just as I encourage Jackson to do the same everyday.
Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for feedback and make necessary changes to make this place be a safe place for him too.
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