When I say our kids see and hear everything, I literally mean they see and hear everything. I chalk it up to part of his Autism Super Powers, but today he struggled to use them for good!
We were riding in the car and I was chewing gum. I could feel this man-sized-observer in the seat next to me staring a hole through my head. I figured it was leading nowhere good, so I ignored. At the next light, I turned to look at him and he whipped his head in the opposite direction while snorting to hold back a laugh. Happened a block later and the light after that. I asked what he was doing and he could barely talk. "BWAHAHAHAHA" (I hear). Leg slaps included, just for added impact. "What?" I asked. "Your mustache has wrinkles, now! BWAHAHAHAHA!" "I asked what on earth?" He answered that I have wrinkles from my lips now like an "old lady grandma." I tried to save myself and told him the wrinkles were from 40 years of playing flute and piccolo and don't have a mustache. I really tried to stay calm and not crack up. "BWAHAHAHAHAHA! Does your mustache get in the way of playing flute?" This isn't exactly a One Minute Miracle, but many connections were made during this conversation, admittedly at my expense. I'll let you all know where to get the cheapest botox and a close shave.
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I never knew lunch at Taco store would provide life lessons and a near panic attack at the same time. Let me set the scene for you!
We enter the slowest Taco shop on the planet and stand in a line of about 15 people . . . all ahead of us. I can see Jake taking in the crowd, eyes darting faster and faster, as they are all teenage boys his age, his size and his appetite. They were joking around while waiting for the their food and were speaking loudly. We waited and waited and I could see Jake growing more nervous as the noise level climbed and the rowdy teens started sneaking each others' phones and laughing! I didn't say anything to Jake, at risk of him forming judgement based on my face or tone. I just watched and chuckled a few times. He watched them; eyes darting from one to the other, studying long hair, cool hats, and pants belted below the butt. He looked confused at times, but afraid to ask me anything at the moment. Once we were sitting down and eating, he was focused on his plate, that is until two teens exited. They had run outside and were 'play boxing' each other just outside the glass doors. You know, the soft, fake punching and sound effects you do with your siblings to piss off mom! Jake spotted them fighting, but couldn't tell they were playing. Faster than he inhaled his taco, Jake was up, phone in hand and running for the door. He was about to go outside to stop the fight, then call police! I turned around and screamed, "Jake". At the same time, another kid (not part of the crowd) was up right behind Jake. He was going to grab him! Now Jake was really scared! He came back to the table, shaking, 9 & 1 dialed on his phone. "They're fighting, they're fighting! It's not safe, I'm calling the police!" I tried to explain, as calmly as I could, that he had to look at the faces. The kids were smiling and joking while punching. A social cue completely missed in the emotion of the moment. Two tacos and a nachos down, the guy seated by the window came over the introduce himself as Kenyon. The twenty-something explained to me that he has a little brother who "his mom can't leave alone for one minute, not even to go to the bathroom. He can't even sit in a chair, ma'am! I can't remember what he has though, what's that word?" I asked if he's trying to explain Autism? He answered yes, then continued, as soon as he saw Jake run towards those guys he felt he needed to protect him. He explained he knew because, "he (Jake) didn't act like the other boys, he seemed like a good kid and he was about to get really hurt!" I was pretty amazed by this kid. I wanted to give him a hug for even caring to begin with, but at the risk of embarrassing him in front of the others I just shook his hand with my cheesy, greasy fingers. Jake refilled his drink while I watched two other group members make fun of his uneven socks, too tightly tied shoes and felt a pit form in my stomach. He was bigger than most of them, but "younger" than all. I didn't say anything, I was waiting to see if Jake even noticed the comments. Nope. (I call that "beautifully oblivious".) While I answered the barrage of questions from Jake on the way home, we talked about the police man rule "protect the officer first". He understood that and was excited to be compared to being a police man. There were many quiet moments though too . . . he was thinking . . . shaking . . . confused. I was emotionally exhausted from the lunch. My stomach was sick from the experience as I forced myself to think of what we learned. I thought back to Kenyon. He was our miracle of the moment and put there for a reason. This boy. This boy is my heart.
There are times, as with every parent, that you want to pop their heads off, but then there are the moments of tenderness that seem to erase your last fit of frustration. These moments usually happen with older kids who are realizing all the work their parents invest in them, but when it happens with a young spectrum kid, it's a miracle. I'm struggling right now with allergy-yuck-bronchitis. So there's a lot, A LOT of coughing, well barking, going on. I can't breathe without hacking. This morning, Jake came to breakfast and saw my lineup of 4 medications and promptly said, "Good morning, are you going to die?" That's not the tender part... This must have been with him all day. When I picked him up, I was still coughing. Following his exercise class, still coughing... take inhaler while driving... breathe! Jake again asked me in a very concerned and scared voice, "Mom what exactly is wrong with you?" So I explained that I was very glad he asked so we could alleviate some of his worry. I told him that sometimes I get allergies and get all gunky. Sometimes my air pipes swell up from coughing and all that gunk gets stuck, tickling me inside and making it hard to breathe. He understood that, thank goodness, there's not an easier-to-understand word than "gunk"! Silence He's thinking. "If we are at home and you stop breathing, will you go in an ambulance?" "I hope so, but someone would have to call them." "Would Dad ride with you in the ambulance? Would I ride with you in the ambulance?" I said, "well, maybe daddy, but we'd find a friend to stay with you so you weren't scared." "No. I want to go with you. I want to be with you always. You are my partner, my other part, like." I nearly needed to pull over the car. Crying was not conducive to the current snot situation so I was just sat quietly soaking in the moment. He continued... "You know that when I get mad and yell that I love you so much. I could never be without you mommy. I just lose control sometimes then I feel really bad." My heart was swelling again. I could feel beating in my temples. I could feel his deep need to know I will always be here, almost desperation. That's a lot to carry. It can be heavy. It can be hard. But I'll carry this miracle with me every day. During these very anxious holiday times, we're never really sure which Jake is going to pounce downstairs in the morning. So when we catch a glimpse of "the real Jake" we hold on for all it's worth. We've been able to manage a bit of his anxiety by letting him receive a gift early. So he's relaxed a bit and while his generous heart is shining through, today he burst my heart open.
I picked him up from school today, after a very busy and tiring week and he was very talkative. Throughout our coversation about school, the weekend and work, he kept going back to a homeless guy he spotted earlier in the day during his field trip. Describing with a sound of concern. We started talking about the unusually cold day, "I bet the guy was really cold standing outside all day." he mentioned first. A few minutes later, "he had a sign around his neck that said God Bless You." We began to eat, "Mom you should go give him some money. Then, "he had many canes to help him stand up." As we were finishing up our fajita meal, of course there was one left over tortilla, 3 steak pieces, a pile of untouched rice, chips and veggies for the fajita. I packed the food up to take home and we headed to the car as Jake carried the food. We ran to escape the wind, and blasted the heat once inside. Jake asked if we could go see if the guy was still out there. We were crawling through traffic and Jake was craning his next to see ahead. He spotted a dark figure with a walker, leaning up against the traffic sign. With glee, he excitedly said, "he's there, he's there!" He asked me to move over a lane to get closer to the median. (mind you, we were 3 lanes away in the middle of rush hour). I was able to scoot over, as we approached he gave me the doggie bag which was steaming up the plastic see-through container. I stopped in the lane, as the car behind me unexpectedly decided to turn left and hold up traffic. (not a coincidence) Horns started honking, so he turned to look. I rolled down the window and yelled, "here you go, eat it up, it's still warm!" As we pulled away we could see the man eating it within seconds. Jake turned and exclaimed, "We are doing God's work. When you share your blessings, you get even more blessings! We made that man so happy! I feel good (full body shiver)!" As a tear rolled down my cheek, I swiped it away and thought, this is the meaning of Christmas and you really GET IT! Christmas Miracle Number 1! If I don't see Christmas Miracle Number 2, my heart is satisfied. I sure hope this Jake gets out of bed in the morning! The years of teenage-dom can exhaust any parent. Raging hormones, plus growing bodies, plus the urge for independence are a complicated mix of emotions, with or without autism.
Trying to stay a step ahead of your teen is challenging but sometimes I forget to do exactly what I am always harping at Jake about. I swear I say, "listen the first time" about a zillion times a day. It actually seems to be getting worse as we approach 14. So I decided to listen... really listen to what he's saying. Conversations about "all my memory pictures are now black" and "no one ever showed me how to do decomposition (math) problems" are chocked full of information. Not just what you're hearing either. Here's a glimpse at how Jake explains what his brain feels like lately. Just listen. Feeling sentimental tonight... sorta like an emotional wish-washy teenager myself.
Lately, it seems like Jake is growing by leaps and bounds. Size-wise, of course, he's growing like a weed. He's shockingly reaching milestones on the growth chart for a years older teenager... it has been this way for ever but I thought it would slow down. He's growing mentally and learning how to manage emotions and disappointments with flexibility. Growth emotionally includes more concern for others' feelings. Watching Jake reach beyond wildest dreams professionally, at 13, is blowing my mind. Literally... I now just stare at him with my mouth ajar and tears brimming my eyes when he steps up to a microphone and speaks to huge audiences. Sometimes it feels almost "out-of-body". There are days when I feel like he's growing up at the speed of light and just want to hang on to him and never let go. Other days we still fabricate growth opportunities and push him out of his comfort zone. So I'll make that sandwich. I'll help with homework. I'll make room on the couch for his adult-sized body next to mine. I'll roll over and watch the stupid videos on his iphone and laugh harder than him. I'll take the hugs and rest my chin on his shoulder in the middle of church, at the store, after the gym. I'll snuggle in for bedtime stories from our favorite history book. I'll take his hand when he reaches for mine. Any. Day. Of. The. Week! Today is one of those days.
When I'm challenged to reassess what this blog is for and what's the fuel driving me to keep writing and evaluating. Designing this blog in the beginning, started with wanting to share a positive message about autism. To convince the world that these children are gifts with a purpose, to be cherished and accepted. That we can all succeed in our own special ways. I believe that, I see that and I so desperately want everyone else to see it too! Lately, I've struggled between writing with my emotions or writing what's "right" and acceptable. This blog is a place to share the downs, but mostly ups of raising a child on the spectrum. There are many emotions that come with these hurdles fueled by conscience, society, friends opinions and what I perceive to be the critical "they" out there. I haven't written in a couple weeks because I've been afraid of the "they" perception. What other people think can be debilitating and really stifle creativity. (Some days I still fear judgement. I'm working on that!) These articles cannot please everyone and point is to share our failures and successes so that others don't feel so alone and maybe find a glimmer hope. Bottom line: apologies for being swayed by the "they" and I'll hop back on that horse. We can only succeed if we are strong and united in our message. Total acceptance or bust! Keep looking for the miracle in every minute. Stay tuned. We do the same thing every (almost) weekend. Up early on Sunday to catch 8:45am church. It's taken us a while to settle on a church we really like and that is in our neighborhood.
It wasn't easy.. I'm sensitive, Jake is uber-sensitive and between the two of us, we see and feel everything. I work with the special needs ministry on this church and on the whole it is the most accepting and understanding community. But, during the holidays, it pains me, but we oftentimes need to skip church. There are way more people for the big masses, (the holiday church goers) and they don't know us. They are closer, clueless and not as understanding. This morning, as hard as we tried to stay, we actually walked out of church services. There were many contributing factors, but the fact that the people around us were glaring (like turning around and staring, shaking heads, laughing. I'm not exaggerating) and some even left our pew with heavy sighs when Jake started using his chew stick, pretty much did it for me. It made me sad for many reasons, but how our Super Hero handled it is reason to celebrate! Jake was able to use his words and stay calm to explain the situation. Watch it below in his VideoBlog#6 I could see the hesitant look in his eyes. It was the same look that all the elves had. Sort of like, why is this lady and giant kid in line for the Santa? He's got to be 6' tall! Way bigger than Santa.
I eyed Santa, as he was eyeing us, and determined he was young... and skinny... and hopefully two butts would fit in that giant chair that seemed to swallow the great elf right up. He watched as I picked the rip-off photo package and started to shift his body over. "Come on over here bud, sit next to me." We timed our trip to the mall to visit Santa in the middle of the afternoon, on a school day, to avoid lines (and looks). It worked perfectly this time. Way cooler than Santa. Jake asked me if he could go over, and I reassured him that THIS stranger was safe. After reminding him not to sit ON Santa's lap but sit next to him, he gingerly squeezed in next to him. Whoa, way bigger than Santa. "I want an iWatch!" Jake told him. "And a comforter for my bed, and a new suitcase to take to Texas. It has to have four wheelies and turn fast. This Santa, being so young, was pretty savvy. "Well the iWatch is going to be really hard to get. There aren't many of them. I might be able to do the comforter for your bed, but you have to pick up your bedroom so I don't trip and break my neck!" Ok.. now I wanted to kiss Santa Claus. (I saw mommy kissing Santa Claus).... Then he added, "While you're at it. I remember last year, Rudolph needed to use your bathroom, and it was so dirty, he waited until he was at your neighbor's house. That's how you get on the good list! Clean up!" Ok.. Santa scores again! The photographer elf urged a smile from the two and coaxed Jake to look Santa in the eyes, imagine wedding photos nose-to-nose, (clearly not understanding autism) then she told them to hug. Well, to a kid who works very hard deciphering strangers from friends from acquaintances, he hesitantly put his one arm across his front, as did Santa. I'm surprised that's the cutest picture of the bunch. As we were paying, since no one else was in line, Santa came to register to talk more with us. They were intrigued by Jake and he them. There was no weirdness, no stress, then one of the elves told me that Jake "must be super smart, right?" I now wanted to hug the elf, but instead I just told her "Jake is one of the smartest people I know and he's my hero." They all got warm fuzzies, handed me the cutest $35 picture ever and waved us on our way. Another person educated, a lesson way bigger than Santa. Another Santa success! Now he better deliver on time! That a story for another blog.... fingers crossed. If he doesn't deliver, next year, Jake is likely to be twice his size, and you know these beautiful Autism brains, he will never forget! Merry Christmas. It is not lost on me that most people on this planet have trouble expressing how they feel. Some are afraid, some are sad, and others just can't find the right words. I count myself in all three of these categories at times, and would think many parents do as well.
Jake, the super sensitive super hero, doesn't fall into any of these categories, and we realize how blessed we are! He is able to give us a play-by-play of what it's like to live with his super fast brain. Earlier this week, I was really enjoying the fact that he crawled into bed for a quick morning cuddle, and then he spoke. "Mom, you know I think my Autism is changing." I sat up straignt in the bed and asked why he thought that and to go on more. He explained, "I need headphones a lot more, other kids are bothering me more and I really can't pay attention. Those things are really hard for me. My Autism is changing." Not only was i completely stunned, I quickly thanked God for this child. Then I sat. I just sat. I didn't even really care that he just described me as having "wild lion hair". I was just stunned. How profound. Once again, God is speaking through our child. As most of my readers know, I fully believe people with challenges were put here to teach us to love more fully and be more patient. What Jake just told me, how he amazingly articulated his confused feelings, could help so many families struggling with teenagers, Autism or not! We discussed how the chemicals in his body are changing through puberty. How the human brain doesn't stop growing until mid-thirties. How it's okay to feel a little nervous about these changes and we need to grow now from these new sensations. Imagine what it feels like to be able to "feel" your brain changing? That's not only Autism... that's also a miracle. |
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