How do you camouflage Autism?
Can you somehow get magical clothes that make you "blend in" in the midst of flapping hands, shouting whispers, shouting shouting, jumping in terror and covering ears at regular sounds, spinning in circles, manipulating and inspecting an object for hours at a time, screaming at the idea of getting in a shower, stomping feet, biting, pinching, jumping away from a pat on the arm, and melt-downs? If so, sign us up!
I'd like to order the special "blend-in" clothes for WalMart (especially for the check-out lane), church and neighborhood purposes. Machine washable preferably! Each of these places create the toughest arenas to regulate Autism symptoms and also end up creating the largest spectacle opportunities.
While strolling down the isles of WalMart in the top toddler seat of a shopping cart, on most occasions, Ella can be seen (and heard) aggressively chewing on her bright green chewy (or poor little toy of choice) while singing at the top of her lungs, "Aaaa aaa men! Aaaaa aa men! Aa a men! A-men! A-men!" (or another favorite song from church) over. and over. and over again. Of course, there are lulls when I ask her to "please use a quiet, inside voice", but the lulls turn into whisper songs that progressively reach speaking volume and then to the point of "singing her heart out volume" that can carry a melody from the produce section to the tire center! If I can successfully quiet her vocal chords, Ella might start clapping. (that need to create noise just erupts out in one form or another) When she claps, her mouth drops open, her eyes zone out and she bangs her hands together as hard and fast as two little sets of digits can go! It looks as if she's trying to catch a fly that just keeps buzzing through her hands and if the hands don't get it, the mouth agape sure will! But you know, most times, as long as she isn't singing at an offensive volume, I let her tunes flow! Maybe a passerby will hear the words and be touched. Maybe we'll have the opportunity to share her story because of a curious shopper's inquiry. Maybe her joy will be contagious and give someone enough hope to live one more day. And plus, I just like hearing her sing those songs!
The check-out lane of WalMart can be quite another story on the other hand. By the time we usually reach the register, Ella has been seated for an hour, she's reached her maximum capacity to sit "still" and all of a sudden, a heavenly array of items appear, offering all of her favorite things: gum, candy, toys, coloring books, small gadgets, chap sticks, flash lights and more! The items that dance on the walls lining the check-out area come to life and seem to all scream out at her which sends a magical electricity into her bum that makes it impossible for her rear to touch the seat! It's like her seat is lava and she literally bounces up off of it, like it will burn her if she lets it rest there for more than an instant! Her pointer finger goes wild and her volume control is non-existent. "Mom! Mom! Mom! MOM!" is all that can be heard as she wildly attempts to gain my attention while I load my items onto the conveyor belt to be scanned and re-loaded into our cart.
Now, imagine this if you will... I'm at the end of the card, loading items to be scanned (as quickly as I can, mind you, because the line behind me is endless) and all of a sudden, Ella finds something so irresistible that she's now pulling her legs up through the leg slots, throwing her bum in the air and beginning to stand up while I try the get around the side of the cart quick enough to catch her before she falls onto tile floors and when I do finally reach her (barely) before a catastrophe, another one erupts with an explosion of terrified and frantic screams from Ella as she realizes she's been detoured from her mission and melts into a full-body panic (body goes limp with bum becoming led and arms shooting straight up while head is thrown back and she starts falling right through my arms. Then comes the kicking, flailing, screaming and sobbing all while my cart is still half-full and bags are beginning to overflow at the pick-up carousel and every eye in the check-out area that spans the entire store-front is on me).
I can imagine what thought bubbles were popping up all around the store that day:
"Wow, get your kid under control, lady!"
"That kid just needs a good spankin!"
"Do you see the diaper poking out of that little girl's pants! She looks like she's 5 years old! What kind of a mom is this lady?! Start to stop babying!"
"What a spoiled little ____!"
"Oh my word, how annoying!"
OR
"Poor little thing! Her mom should just let her look at the toy! What's the harm?"
"Some parents are just too strict!"
"Just give her the toy!"
"That mom needs to distract her, tell her she can have the toy if she's calm!"
"That mom needs to take Love and Logic!"
Being very aware of looks and stares, I held Ella tightly in my arms. Knowing I should be tending to my cart of items and keep the line moving, the Lord gave me patience and the ability to focus on my out -of-control angel. I didn't know what to do. There were no blank walls to take her to (to block out stimuli), there wasn't a blanket to hide her under, no tight space to squeeze into (all calming tactics for kids with Autism), so I knelt down and took her by the shoulders and put my face in front of hers. I issued her her choices, which were basically: obey (sit in the cart) and go home nicely with me, or disobey (go wild and crazy) and have a consequence (loss of some toy or privilege). During my "chat" with Ella, the cashier graciously loaded my cart and finished scanning our items. I will not forget her kind willingness to overlook the explosion that had just happened in front of her! Ella did calm... finally. And we got to pay and go on our way. But I tell you what, that is one of those times, I would have loved to become invisible (camouflaged) and muted!!
Today, Ella's melt-down came in the form of split-mindedness. While hanging on our "trapeze" bar on our swing-set, Ella attempted to swing her legs up toward her head to catch the bar with her toes and push her legs through to do a back-wards flip. Her older sister, Ari, does it all the time, so Ella wants to do it too, only Ella has low muscle tone and little body awareness (knowing and understanding the space in which her body occupies). While hanging, Ella is only able to swing her legs up to her tummy and then back down again to catch herself. Becoming so frustrated, she was arguing with herself to give up, but the second "self" only wanted to do the "back flip". Noticing her frustration, I helped her a few times to do the flip, hoping it would give her a sense of accomplishment, but being the fighter that she is, my help was not satisfying her! She wanted to get it done herself (which anyone could see was an impossibility at this point). She'd hang on the bar, throw her legs up as hard and fast as she could, only to reach her belly-button area before dropping back down and crying. Again and again this went on. After I prompted her to find a way to "calm her body", Ella resigned to the swing beside the bar and swung on her tummy for a few sways, which really did an amazing job of calming her. You'd never know that a minute before she was a puddle on the ground! As soon as her body would "re-organize", she'd hop back over to the trapeze bar and attempt her back flip again! I've never met such a determined kid!
Time and time again, Ella would try to get her legs up to the bar. And time and time again, she'd melt into a mess on the sod in frustration. I tried helping her do it a few times more, but her anguish of her failed attempts would take her to the swing where she'd swing on her belly and sway front to back, front to back until her body was calm and then she'd repeat the entire cycle again! Finally, it was time to stop the attempts which were spurring the melt-downs. I interceded and called it quits, which sent Ella into a new fury!
Today, she hit me.
She's never hit me.
Ever.
Her body had melted. She was frantic. Her screams erupted and echoed through the neighborhood. Her head flew back, body went limp and as I scooped her up, she jolted and threw her hands wildly around. She became so intensely upset that she began screaming and clapping out her intense frustrations with her hands, but when that did not alleviate what was happening to her (I was taking her inside), her hands came at me. Her eyes were wild and she had lost control.
I was shocked.
I squeezed her close to me and continued to carry her silently inside, while she flailed and screamed (that gut-wrenchingly horrid top-of-your-lungs screech that rings out until the voice goes raw) in my arms. I placed her in my dark room, on the floor and covered her with a blanket (head and all) and said, "I will talk and listen to you when you're body is calm," and then I turned to leave the room. Instantly, after placing the blanket on her, she sighed. The exterior stimuli was gone and she was "safe" within the confines of the blanket. When I began talking with her about why she had to come inside (the fact that she hit me and was melting on the trapeze bar), her fit returned. She was inconsolable. I told her calmly, amidst her screams that I would talk with her when her body was calm. Leaving my room with my 4 year old in a heap on the floor, I began preparing dinner with the ear-piercing screams of my out-of-control gem in the background. Calvin and I just looked at each other and sighed. Her outbursts were becoming more frequent and harder to conquer. Her speech is getting caught up more and more and being replaced with gestures and grunts.
How? How do we cope? How do we help her? How do we make her feel safe? How do we stretch and grow her? How do we camouflage and just fit in?
Maybe God doesn't want us to "just fit in". Maybe He has a different plan altogether!
When Ella finally calmed her body, I was able to go back into the room and wrap her into an "Ella burrito" (I wrap her tightly in a large blanket, much like you'd swaddle a baby - probably feels like a straight jacket), which she loved and waited to see what she had to say. Without prompting, she said, "Mommy? I'm sorry I've been so rude today."
Was this the same kid?
"I forgive you sweetie, but what did you do that wasn't ok?"
"I hit you," she said as she looked at me with the most sorrowful, sincere eyes. "I'm sorry," she said again.
I told her again that she was forgiven, but because she chose to hit, she was done outside for the night.
I hugged her tight and swayed side to side to help keep her body calm as she rested in my lap. Then, I asked her to give me ideas for how to calm her body for the next time she feels like she's going to melt-down. And to my great surprise, she erupted with great ones!
- I can run and play inside
-I can swing
-I can hide under my bed
-I can get under a blanket
-I can do this... (she proceeded to run over to the corner, put her back up to it tightly and slide down into a squatting position so that her entire backside was squeezed into the corner of the wall - creating a tight little pressurized safe spot)
Ella's ideas spilled out to my amazement and I even got to learn a few new ways that she's been using to calm herself. Our typical strategy is to find a white wall - or low visual stimulant area and take deep breathes. Many times, you can find Ella beginning to melt and taking huge labored shaky breathes in an attempt to calm her body down. It really is a physical reaction to stimuli in her surroundings. What a blessing it was to hear this little girl express ideas of how to calm herself in the midst of a melt-down!
During our chat, Calvin wandered in and then Ari. We talked about how we could help Ella to calm down and we reminded her of the ways her Autism is a gift!! After-all, she is a 4-year-old who is reading and counting (to 40) and can even recognize written numbers (even numbers like 40 & 60!). She can smell things before any other human being can and can hear the slightest little sounds. She's amazing!
Then, each of us in turn - even Ella - prayed for her body.
What if... What if God has plans through this storm? I have no idea what those plans are! I wish I did. But I don't. All I know is that whenever Ella has had trials in the past, God has pulled her through and brought others with her!
Tonight, I'm just writing as a tired, honest mama. I love my girl. I'm thankful for my girl! I can't imagine life without my girl! I want to encourage others who might be going through the same thing, that there are more of us out here and you are not alone! And I want to give God praise! Our children are beautifully and wonderfully made.
I just wonder... what is God up to with Ella?
When God didn't heal her eyes, He used her little glasses to prompt questions that brought about her miraculous story and life-changing decisions for Christ!! When God didn't heal her hips and a life-threatening clot in her heart, He called us to Peru to the mission-field and gave us the opportunity to accept in faith and see the miracle of her healing and His leading! When problems with her hips popped back up and our ministry in Peru was cut short, He provided inspiration to me to write her story, through which I've had the opportunity to lead a number of young people to Salvation in Jesus through prayer! Whenever there's a trial, there seems to also be a miracle. I just can't help but wonder what comes next? What's He planning? How's He going to use this? I'm not sure, but I don't want to miss it! And when it comes, I sure hope it's not hidden in camouflage! Maybe a little "scene" here and a little "scene" there isn't so bad... especially if someone is impacted for Jesus in the process!
I hope I never miss His miracles and mistake them for trial! To God be the glory, the power and honor forever and ever! Amen.
2 Timothy 2:10
"So I patiently accept all these troubles so that those whom God has chosen can have the Salvation that is in Christ Jesus. With that Salvation comes glory that never ends."
Can you somehow get magical clothes that make you "blend in" in the midst of flapping hands, shouting whispers, shouting shouting, jumping in terror and covering ears at regular sounds, spinning in circles, manipulating and inspecting an object for hours at a time, screaming at the idea of getting in a shower, stomping feet, biting, pinching, jumping away from a pat on the arm, and melt-downs? If so, sign us up!
I'd like to order the special "blend-in" clothes for WalMart (especially for the check-out lane), church and neighborhood purposes. Machine washable preferably! Each of these places create the toughest arenas to regulate Autism symptoms and also end up creating the largest spectacle opportunities.
While strolling down the isles of WalMart in the top toddler seat of a shopping cart, on most occasions, Ella can be seen (and heard) aggressively chewing on her bright green chewy (or poor little toy of choice) while singing at the top of her lungs, "Aaaa aaa men! Aaaaa aa men! Aa a men! A-men! A-men!" (or another favorite song from church) over. and over. and over again. Of course, there are lulls when I ask her to "please use a quiet, inside voice", but the lulls turn into whisper songs that progressively reach speaking volume and then to the point of "singing her heart out volume" that can carry a melody from the produce section to the tire center! If I can successfully quiet her vocal chords, Ella might start clapping. (that need to create noise just erupts out in one form or another) When she claps, her mouth drops open, her eyes zone out and she bangs her hands together as hard and fast as two little sets of digits can go! It looks as if she's trying to catch a fly that just keeps buzzing through her hands and if the hands don't get it, the mouth agape sure will! But you know, most times, as long as she isn't singing at an offensive volume, I let her tunes flow! Maybe a passerby will hear the words and be touched. Maybe we'll have the opportunity to share her story because of a curious shopper's inquiry. Maybe her joy will be contagious and give someone enough hope to live one more day. And plus, I just like hearing her sing those songs!
The check-out lane of WalMart can be quite another story on the other hand. By the time we usually reach the register, Ella has been seated for an hour, she's reached her maximum capacity to sit "still" and all of a sudden, a heavenly array of items appear, offering all of her favorite things: gum, candy, toys, coloring books, small gadgets, chap sticks, flash lights and more! The items that dance on the walls lining the check-out area come to life and seem to all scream out at her which sends a magical electricity into her bum that makes it impossible for her rear to touch the seat! It's like her seat is lava and she literally bounces up off of it, like it will burn her if she lets it rest there for more than an instant! Her pointer finger goes wild and her volume control is non-existent. "Mom! Mom! Mom! MOM!" is all that can be heard as she wildly attempts to gain my attention while I load my items onto the conveyor belt to be scanned and re-loaded into our cart.
Now, imagine this if you will... I'm at the end of the card, loading items to be scanned (as quickly as I can, mind you, because the line behind me is endless) and all of a sudden, Ella finds something so irresistible that she's now pulling her legs up through the leg slots, throwing her bum in the air and beginning to stand up while I try the get around the side of the cart quick enough to catch her before she falls onto tile floors and when I do finally reach her (barely) before a catastrophe, another one erupts with an explosion of terrified and frantic screams from Ella as she realizes she's been detoured from her mission and melts into a full-body panic (body goes limp with bum becoming led and arms shooting straight up while head is thrown back and she starts falling right through my arms. Then comes the kicking, flailing, screaming and sobbing all while my cart is still half-full and bags are beginning to overflow at the pick-up carousel and every eye in the check-out area that spans the entire store-front is on me).
I can imagine what thought bubbles were popping up all around the store that day:
"Wow, get your kid under control, lady!"
"That kid just needs a good spankin!"
"Do you see the diaper poking out of that little girl's pants! She looks like she's 5 years old! What kind of a mom is this lady?! Start to stop babying!"
"What a spoiled little ____!"
"Oh my word, how annoying!"
OR
"Poor little thing! Her mom should just let her look at the toy! What's the harm?"
"Some parents are just too strict!"
"Just give her the toy!"
"That mom needs to distract her, tell her she can have the toy if she's calm!"
"That mom needs to take Love and Logic!"
Being very aware of looks and stares, I held Ella tightly in my arms. Knowing I should be tending to my cart of items and keep the line moving, the Lord gave me patience and the ability to focus on my out -of-control angel. I didn't know what to do. There were no blank walls to take her to (to block out stimuli), there wasn't a blanket to hide her under, no tight space to squeeze into (all calming tactics for kids with Autism), so I knelt down and took her by the shoulders and put my face in front of hers. I issued her her choices, which were basically: obey (sit in the cart) and go home nicely with me, or disobey (go wild and crazy) and have a consequence (loss of some toy or privilege). During my "chat" with Ella, the cashier graciously loaded my cart and finished scanning our items. I will not forget her kind willingness to overlook the explosion that had just happened in front of her! Ella did calm... finally. And we got to pay and go on our way. But I tell you what, that is one of those times, I would have loved to become invisible (camouflaged) and muted!!
Today, Ella's melt-down came in the form of split-mindedness. While hanging on our "trapeze" bar on our swing-set, Ella attempted to swing her legs up toward her head to catch the bar with her toes and push her legs through to do a back-wards flip. Her older sister, Ari, does it all the time, so Ella wants to do it too, only Ella has low muscle tone and little body awareness (knowing and understanding the space in which her body occupies). While hanging, Ella is only able to swing her legs up to her tummy and then back down again to catch herself. Becoming so frustrated, she was arguing with herself to give up, but the second "self" only wanted to do the "back flip". Noticing her frustration, I helped her a few times to do the flip, hoping it would give her a sense of accomplishment, but being the fighter that she is, my help was not satisfying her! She wanted to get it done herself (which anyone could see was an impossibility at this point). She'd hang on the bar, throw her legs up as hard and fast as she could, only to reach her belly-button area before dropping back down and crying. Again and again this went on. After I prompted her to find a way to "calm her body", Ella resigned to the swing beside the bar and swung on her tummy for a few sways, which really did an amazing job of calming her. You'd never know that a minute before she was a puddle on the ground! As soon as her body would "re-organize", she'd hop back over to the trapeze bar and attempt her back flip again! I've never met such a determined kid!
 |
| This is our swing-set, the trapeze bar is hard to see, but is between the swings |
Time and time again, Ella would try to get her legs up to the bar. And time and time again, she'd melt into a mess on the sod in frustration. I tried helping her do it a few times more, but her anguish of her failed attempts would take her to the swing where she'd swing on her belly and sway front to back, front to back until her body was calm and then she'd repeat the entire cycle again! Finally, it was time to stop the attempts which were spurring the melt-downs. I interceded and called it quits, which sent Ella into a new fury!
Today, she hit me.
She's never hit me.
Ever.
Her body had melted. She was frantic. Her screams erupted and echoed through the neighborhood. Her head flew back, body went limp and as I scooped her up, she jolted and threw her hands wildly around. She became so intensely upset that she began screaming and clapping out her intense frustrations with her hands, but when that did not alleviate what was happening to her (I was taking her inside), her hands came at me. Her eyes were wild and she had lost control.
I was shocked.
I squeezed her close to me and continued to carry her silently inside, while she flailed and screamed (that gut-wrenchingly horrid top-of-your-lungs screech that rings out until the voice goes raw) in my arms. I placed her in my dark room, on the floor and covered her with a blanket (head and all) and said, "I will talk and listen to you when you're body is calm," and then I turned to leave the room. Instantly, after placing the blanket on her, she sighed. The exterior stimuli was gone and she was "safe" within the confines of the blanket. When I began talking with her about why she had to come inside (the fact that she hit me and was melting on the trapeze bar), her fit returned. She was inconsolable. I told her calmly, amidst her screams that I would talk with her when her body was calm. Leaving my room with my 4 year old in a heap on the floor, I began preparing dinner with the ear-piercing screams of my out-of-control gem in the background. Calvin and I just looked at each other and sighed. Her outbursts were becoming more frequent and harder to conquer. Her speech is getting caught up more and more and being replaced with gestures and grunts.
How? How do we cope? How do we help her? How do we make her feel safe? How do we stretch and grow her? How do we camouflage and just fit in?
Maybe God doesn't want us to "just fit in". Maybe He has a different plan altogether!
When Ella finally calmed her body, I was able to go back into the room and wrap her into an "Ella burrito" (I wrap her tightly in a large blanket, much like you'd swaddle a baby - probably feels like a straight jacket), which she loved and waited to see what she had to say. Without prompting, she said, "Mommy? I'm sorry I've been so rude today."
Was this the same kid?
"I forgive you sweetie, but what did you do that wasn't ok?"
"I hit you," she said as she looked at me with the most sorrowful, sincere eyes. "I'm sorry," she said again.
I told her again that she was forgiven, but because she chose to hit, she was done outside for the night.
I hugged her tight and swayed side to side to help keep her body calm as she rested in my lap. Then, I asked her to give me ideas for how to calm her body for the next time she feels like she's going to melt-down. And to my great surprise, she erupted with great ones!
- I can run and play inside
-I can swing
-I can hide under my bed
-I can get under a blanket
-I can do this... (she proceeded to run over to the corner, put her back up to it tightly and slide down into a squatting position so that her entire backside was squeezed into the corner of the wall - creating a tight little pressurized safe spot)
Ella's ideas spilled out to my amazement and I even got to learn a few new ways that she's been using to calm herself. Our typical strategy is to find a white wall - or low visual stimulant area and take deep breathes. Many times, you can find Ella beginning to melt and taking huge labored shaky breathes in an attempt to calm her body down. It really is a physical reaction to stimuli in her surroundings. What a blessing it was to hear this little girl express ideas of how to calm herself in the midst of a melt-down!
During our chat, Calvin wandered in and then Ari. We talked about how we could help Ella to calm down and we reminded her of the ways her Autism is a gift!! After-all, she is a 4-year-old who is reading and counting (to 40) and can even recognize written numbers (even numbers like 40 & 60!). She can smell things before any other human being can and can hear the slightest little sounds. She's amazing!
Then, each of us in turn - even Ella - prayed for her body.
What if... What if God has plans through this storm? I have no idea what those plans are! I wish I did. But I don't. All I know is that whenever Ella has had trials in the past, God has pulled her through and brought others with her!
Tonight, I'm just writing as a tired, honest mama. I love my girl. I'm thankful for my girl! I can't imagine life without my girl! I want to encourage others who might be going through the same thing, that there are more of us out here and you are not alone! And I want to give God praise! Our children are beautifully and wonderfully made.
I just wonder... what is God up to with Ella?
When God didn't heal her eyes, He used her little glasses to prompt questions that brought about her miraculous story and life-changing decisions for Christ!! When God didn't heal her hips and a life-threatening clot in her heart, He called us to Peru to the mission-field and gave us the opportunity to accept in faith and see the miracle of her healing and His leading! When problems with her hips popped back up and our ministry in Peru was cut short, He provided inspiration to me to write her story, through which I've had the opportunity to lead a number of young people to Salvation in Jesus through prayer! Whenever there's a trial, there seems to also be a miracle. I just can't help but wonder what comes next? What's He planning? How's He going to use this? I'm not sure, but I don't want to miss it! And when it comes, I sure hope it's not hidden in camouflage! Maybe a little "scene" here and a little "scene" there isn't so bad... especially if someone is impacted for Jesus in the process!
I hope I never miss His miracles and mistake them for trial! To God be the glory, the power and honor forever and ever! Amen.
2 Timothy 2:10
"So I patiently accept all these troubles so that those whom God has chosen can have the Salvation that is in Christ Jesus. With that Salvation comes glory that never ends."
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