One Quarter Down…

High school, here we are. One quarter in, and I am exhausted. I want to laugh at the me from last year, when I thought I was busy. Ha! You dummy! Just wait until he’s a freshman…

I want to be clear about the fact that I do not wear busy-ness like a badge of honor. In fact, I hate it. I have wanted a pause button for my life for a while now, but I can’t find one. Actually, maybe I pushed the fast forward button.

Let’s break it down, shall we? I work full time and feel like I can’t go more than a few days or less without managing another IEP meeting. My own son, who no longer has an IEP because the school determined a 504 Plan will meet his needs, requires extra parenting at home to make sure he stays on task (I’m guessing it takes him twice the time it takes typical kids to finish homework– HOURS every night) and turns in this homework. Perhaps I should be fired. He has already botched his high school GPA by not turning in the easiest assignments of all– the ones where he signs a piece of paper saying he agrees with the class policies and turns it in? Yep… not turned in. In at least two classes… I’m already watching colleges slip from his grasp and it’s only first quarter of freshman year. (For the record, I don’t truly believe these colleges are in his best interest; he was the one who said he wanted to go to the college with the reputation as “hardest to get into in the state”).

But wait! There’s more! He just finished up his cross country season, which was amazing for him socially, but that’s for another time. While he was doing cross country, he was also swimming for swim club. I was adamantly opposed to this idea, but I lost this battle, and have since been saying, “I told you so,” in my head so hard!

Also there was Homecoming, with the game and the decorating and the dances– two dances two weeks in a row because his date was from a different school. And then there’s the monthly volunteering he wants to do, which I can’t deny him because he loves it and I’m so proud of him.

And while I know he is so tired from all of this, as his mom… well, there are no words for the overwhelmed exhaustion that pours out of me via irritability, tears, overreactions, etc. I am working so hard to help him with homework, to keep the house clean (I mean, kind of), to keep him as social as he can be, to make sure his sister isn’t lost in the shuffle (she usually is), to go to his cross country meets, to parent meetings, to band concerts, to volunteer to bring food to pasta parties or work the band fundraiser, to be a wife, to cook healthy foods, to go shopping, to figure out what is going on with his sister and her issues (another story for another time), to keep all the plates spinning, that I feel like I am about to explode at any given moment.

Thank you for letting me vent.

There are many positives here. He doesn’t usually need help completing his homework, just the staying on task and remembering to turn it in parts. He truly is maturing, too. He’s learning to react more appropriately most of the time, he’s working on growing his social skills, he’s admitting to his mistakes more often than before, and he’s becoming easier to talk to. He even argues much less than he used to. When he was handed consequences for the grades, he agreed. He did not argue! Miracle. He’s incredible in so many ways. I’m so grateful for his emotional intelligence, which was in question for a long time. I’m grateful for his empathy, compassion, and kindness. With all this, though, he still has needs unique from other teenagers; the executive functioning struggles he’s had for years are still an issue, and they feel even bigger when I need him to function independently–and he truly wants to– but he genuinely cannot. 

I do not have a moral to this story. I do not know how to get off this train, and I’m not sure I would get off if I could. I would definitely slow this train down, though. If I figure out a way to make that happen, I’ll let you know. Until then, I have a kitchen to clean and a daughter to put to bed. Choo choo…

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month’s Voices of Special Needs Hop? Click here!

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This Too Shall Pass

It’s no secret that I’ve been pretty excited for Cameron to move on from each stage as he grows. Every stage of development has been difficult, from acid reflux as a baby to the sassy toddler who made a million encores after being put to bed every night (a tradition that still continues today), to middle school, which needs no further explanation. Yet today, as we prepare for him to leave middle school and move on to high school, I can’t help feeling emotional. I have worked with middle schoolers in some capacity for 13 years of my career, with eight of those being placed exclusively in a middle school. I was prepared for the difficult times we would experience as parents of a middle school-aged child– as prepared as one could be for the emotional roller coaster that is early adolescence. I was prepared for the sassiness, and the moodiness, the back talk, and having uncomfortable conversations. I wasn’t prepared for how quickly the time would go. I wasn’t prepared for the unexpected peak in growth (literal and figurative) we have seen and the small lights of hope that are maturity. I have lived so long in survival mode with my head down and my boxing gloves poised and ready that the moments of clarity and maturity take me by surprise. Did he really just ask if he could write thank you cards to all of his middle school teachers? Is he actually begging to volunteer with kids who have disabilities? Did he truly just go to an invite-only (from the librarian) event at the library where he knew NO ONE because he felt like the librarian would be disappointed if he didn’t go, and then did he actually have a fantastic time and even do the worm in front of some random older kids he just met? Yes! Yes! And double yes!

We have four years left. The last three in middle school have passed with lightning speed, so I know the next four will feel like a movie- genre, rating, and review to be determined. We have four short years left to help Cameron learn the executive functioning skills with which he still struggles. Four years that we still have some control over some of his choices that may or may not affect his future. Four years to help him become a productive citizen who is kind and independent. Four years to hug him and have talks over hot chocolate and listen to his teenage drama-because he still wants to tell us about some of it. Four years to teach him how to put away his clothes, change his sheets, shop for groceries, and respect women. There is a lot to do! I have a lot of feelings about all of this! So many days are so difficult, yet transitioning away from even those difficult times is emotional and a bit scary. My mantra is always, “This too shall pass.” I just didn’t know how quickly it would pass, even when it felt like forever while in the moments. I remember trying to savor every baby moment with Cameron’s sister because I knew how little time there is when you can hold them and smell them and rock them and they’ll just let you do it. As Cameron transitions into high school, I realize that I need to savor the next four years too. He may not let me hold him and smell him (although I do sometimes– someone needs to tell the boy he stinks) and rock him, but he is still my child. And he probably needs me more now than he did then. Onward to high school! Godspeed!

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!

Want to join in on next month’s Voices of Special Needs Hop? Click here!

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Disappointed and Proud

Photo by Ron Smith on Unsplash

I know that thirteen year-olds are not typically volunteering to help with basic housework. “Oh please, Mom, let me clean the toilet,” are words I’ve never heard (if your kids do say these things, have a heart and don’t tell me). I have heard, “Why do I have to do that? It’s not fair!” countless times, however, so it was no surprise when I arrived home from work on a day when Cameron was home alone to find that literally nothing had been done in the house. Not. One. Thing. I left a list, I discussed it with him the night before, and yet he did not do the dishes. He did not do the laundry. He did not eat anything that wasn’t a pretzel. I arrived home and he had forgotten and “hadn’t seen” the note. I calmly said, “I guess you can do it now,” with my eyes closed and my insides preparing for a battle. But he said, “I’m sorry. Okay.” Holy shit. Did you just read that? He said he was SORRY and he said OKAY! He hugged me too! Seriously, what happened here? I cannot explain how difficult it is for this child to admit when he is wrong, to apologize without being asked, and/or to agree to complete a task without a long argument first, and yet all three of these things happened at the same time. I felt like I may have fainted.

The next day he had fewer tasks on his list. He only needed to do the dishes and to shovel so his grandparents wouldn’t slip and fall when they came to visit while I was gone. He actually likes to shovel, so I thought all would be well. I even texted him to make sure he remembered this time. I thought we were in good shape! By now you know I was wrong. Once again, he did nothing. I mean, he ate actual food and was able to dig some brownies out of the freezer so he could eat a few–I mean give some to Grandpa– but other than that, he did nothing.

I was very patient with him on the first day. I was very upset with him on the second. His dad, however, was infuriated… like the most angry I’d seen him in a really long time. The disrespect! The lack of concern for others! The untrustworthiness! The laziness! Cameron had to go to swim practice so we didn’t have the opportunity to talk about consequences until he arrived home. We agreed upon the following:

1. Finish the jobs you were supposed to do all day after you finish dinner (around 9:00).
2. No phone.
3. You cannot be left home alone, so…
4. On Friday, when you were going to stay home alone with your sister while we go to dinner with friends, you will instead go to your grandparents’ house while she stays home alone, which means…
5. You will miss seeing our friends, your favorite people, when they come over before dinner.

I was cringing so hard about delivering him this news, so I did what any reasonable adult would do and avoided it. I snuck away to read to his sister while his dad told him, then warned her that he was going to be really mad so she should stay away. We all know that Cameron is so explosive when things don’t go his way, that I was prepared for tears, screaming, uncontrollable outrage, etc. I could not have been prepared for the reality of what happened…

He said okay. He said he’d get it done. I was so proud! I couldn’t stop telling him how proud I was of his reaction to everything. I mean, I told him so many times that he was probably sick of me telling him; I know my husband was a bit tired of hearing it, probably thinking that I was focusing too much on that instead of what he didn’t do, but I couldn’t help it! He showed me a glimmer of hope! Maturity! Acceptance! Accountability! These coveted attributes are so elusive that I didn’t know that I’d ever see them in my life. They’re like the giant squid of my son’s existence.

And in the end, he did get the jobs done. He was done at around 11:00 pm, but he did it! He accepted the lack of phone, which has since been returned because of his solid show of maturity. However, he is still not allowed to be left home alone for more than a half hour or so.

With all of that said, we did not properly prepare Cameron for the fact that he would not be able to see our friends on the night he went to his grandparents’ house. We weren’t sure if he’d be able to see them or not until Friday actually arrived. Once Friday night rolled around, he was very upset. Tears, yelling, etc, but we understood. Honestly, we were really upset too! I hated that he couldn’t see them, but timing was off, and it just couldn’t happen. I felt sick to my stomach about it, but we couldn’t back out on what we said; he had to go to his grandparents’ house before they arrived. Calm and consistent parenting is what Cameron needed in these moments, and it’s what we were able to give him. We cheered him up enough before he left, and he ended up having a nice time. Win-win! Proud.

 

An InLinkz Link-up

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month’s Voices of Special Needs Hop? Click here!

An InLinkz Link-up

The Struggle is Real

When your kid is the kid that other kids’ parents don’t want their kids hanging around, but when you know that your kid is teased and bullied incessantly, and you also know those parents have a reason to feel that way, because when your kid and their kid are together they turn brainless. And when you know that you, yourself, don’t necessarily want to hang around with your kid when he acts like this, and you, yourself, are embarrassed by his immature, obnoxious behavior, and you, yourself, struggle every single day to keep it together when you, yourself, are dodging a nearly constant barrage of arguments, and you’re fighting a homework fight, and a grade fight, and a phone fight, and also reading about resilience and grit and the importance these have for success, and you’re watching your child lack these things and realizing you only have five years, actually four and a half, to try to instill the grit that you haven’t been able to instill since birth.

And when you see other kids succeeding — really succeeding — and you have tried harder than any of those parents to try to help your kid succeed, but sometimes it’s not just how much they try, or how much you try, or how much they want something. No, sometimes it’s just genetics, or brain makeup, or something more than you’ve been able to provide through therapy, and coaching, and reading, and consequences, and pleading, and time outs, and tears, and yelling… so much yelling. You never thought you’d be a yeller, but here you are yelling like your life depended on it, because in a way, it does. In a way, you yell so you can release the years and years of tension built up. In a way, if you didn’t yell, the pressure cooker inside you would explode, and you might actually die right there, in your kitchen, while making dinner, helping with homework, and making lunches, if you don’t yell that minute.

…On these days, you can’t focus on the positives. You are always trying to see the positives, every day looking for the bright lights, because you have an ability to  see bright lights where most other people would see Mammoth Cave black. Because you’ve been trained to see the flickers of hope that are barely there, because your flickers are not flickers at all, they are fireworks. Because you have to see the fireworks. Seeing the fireworks gives the hope. And after the fireworks there is always rain, even when you feel like you’ve gotten through the worst storms; there are always more on the horizon. And that’s why there are friends and weekends away and wine and yoga and workouts and junk food and travel and The Book of Joy so you can have mini escapes that you need so desperately and that you need to not feel guilty about indulging in, because damnit if you didn’t have these escapes, you wouldn’t even see the flickers anymore. You need those flickers. Today more than ever.

Memory of a Meltdown

One thing that may sometimes be forgotten is how having a child with any sort of special needs affects a relationship. Having a child, in general, affects a relationship, but it seems that having a child with unique needs exponentially affects how you deal with a co-parent. Because I handle things differently than my husband, I sometimes feel totally alone. I feel like his approach to discipline is different than mine, and while neither are right or wrong, our general philosophies and/or personalities make it difficult to meet halfway. My husband and I were crazy in love when we first met, and we continue to be crazy in love. But oddly, that crazy-love makes it even harder on the days when I feel alone because he’s the person for me, and we are not sharing experiences in the same way that we usually do.

Last fall we had a pretty big situation. With the new school year starting– a recent move, a new school (middle school on top of that), and the fact that he chose to join cross country and football at the same time, Cameron was beyond overwhelmed. I knew something wasn’t right when he was acting so calm all week during his very first week week of middle school. He seemed so… happy. I mean, he’s a happy kid, but transitions typically lead to supersonic booms; it was eerily quiet and calm. So when he had an emotional meltdown mid-week, I wasn’t at all surprised. However, as I’ve stated before, this was not something found in any sort of parenting handbook (and I’ve read a library shelf full of parenting books); this was fly by the seat of your pants parenting. I’m not sure I did the best thing, but I felt so stuck that I didn’t know what else to do…

When Cameron signed up for football, we explained how hard it was going to be. Cameron becomes mysteriously “injured” or “sick” or “exhausted” whenever anything other than what he wants to do is asked of him. Knowing of his “ailments,” we told him from the start that he would go to football even when he was tired or didn’t want to you. We warned him and warned him, but, per the norm, our warnings went unnoticed. I knew right when he arrived off the bus that day, saying the coaches were mean and swore at him, that we were about to enter a “Sam I Am” situation. You know, will you try them on a boat? Try them with a fox? Try them in the rain? Sam I Am is persistent! Cameron is usually not persistent in completing tasks, but that kid can argue himself out of something or us into something like nobody’s business. He’s relentless. And it is exhausting! I was already preparing my counter-argument to stand strong against “Cameron I Am.” Just as predicted, next he said his ankle hurt, which he had sprained a couple of weeks before. By the way, as of posting this, 10 months after his initial ankle injury, our precious hypochondriac is still milking that ankle injury for moments when he needs an extra boost of attention or rest. After the ankle excuse failed, Cameron said that he was so tired and had a headache and stomach ache. He was full of excuses, which is classic Cameron. I’m always trying to think about future careers for him, and I’ve yet to find one where “excuse-making” is a prerequisite; maybe he has a future in politics? All of his excuses bounced off of my excuse-rejecting armour, as I told him to get his stuff and get in the car.  Cameron’s next line of defense was the ever-popular tears. They started about 10 minutes before we had to leave. Tears turned into sobs, but I stayed strong and made him get in the car. I was proud of how I spoke in my best Mr. Roger’s voice about how stress often comes out in tears, how difficult I knew the week had been for him, how it’s okay to cry about things like this, that even adults get to this point, but we all have to suck it up do what we have to do and then come back and cry it out some more. I even explained how exercising at football practice would probably help his stress. He seemed to be listening, until his sobs became even bigger and more dramatic.

Cameron has been dramatic literally since birth, prompting us to call him “Cameron Dramatacus” early on in his life. Obviously, we now know why he seemed dramatic as an infant , given all of his sensory, attention, and processing struggles, but even putting that aside, Cameron was, and continues to be, a drama-king. This makes it difficult for me to know when he’s just over-dramatizing or truly, truly feeling something. Also, I don’t know at which point to let him not do something he committed to because he truly is overwhelmed; sometimes, in fact most times, he acts overwhelmed only to be “forced” into something that he thoroughly and genuinely enjoys. Just weeks or less before this, I had forced him to go to the dog park when he was crying because he didn’t want to go. He ended up loving it and asking if we could go every week. Due to the fact that I do not possess a sixth sense for reading the brain of my pre-adolescent son, I never know what’s real. This makes appropriate parenting an extremely difficult task no matter how many parenting books I continue to read! In this situation, I went with the odds, which were that he was overdoing his drama. Again. I made him go.

I told him that he needed to go and talk to his coach is about his stress and how he feels. At that point, if he and the coaches decided it would be okay for him to miss, that would be fine. But he needed to be his own advocate; it was not my responsibility. We pulled into the parking lot, and he refused to get out of the car. I went to the field where the kids were practicing and left him in the car, thinking that the car is hot, and he would be joining me shortly. He didn’t come. I waited for about 20 minutes at the side of the field, until I walked back to the car and got a phone call from my husband, Jon. Jon talked to him and told him he needed to go. Cameron didn’t move. So here’s where all I’d learned from the myriad of parenting books just exited my brain and freely floated into the universe. Because at this point, I literally drug him out of the car by his football pads–even though he is significantly stronger than me–and explained to him again that if he didn’t go to practice, he still needed to talk to his coaches about what’s going on. I reminded Cameron that I’d already talked to his coaches about his processing issues and that they were very nice about it. I’ve always tried to teach Cameron that he needs to tell people himself, though, because in the end it is him that will need to advocate for his needs, not anyone else. At this point, Cameron was out of the car and following me like a sad sloth (if there is such a thing– I feel like sloths are perpetually happy animals) while I walked up ahead of him. I gestured to a coach and asked if I could talk to him. “Me?” he asked. “Anyone,” I replied. Then I rambled while holding back my own tears, “Cameron wouldn’t get out of the car he’s upset he’s overwhelmed maybe you heard he has some sensory and processing issues I just don’t know what to do so would you talk to him?!?!?!” It should be noted that at this point in the catastrophic event, I was so overwhelmed myself, that I, the captain of the Manners Police, didn’t even say “please” or any other nicety. I was borderline rude.

The mild-mannered coach sat next to Cameron and asked him what was going on. He spoke to him for quite awhile, sharing that his own son has issues, and that his family has not moved even though they’ve wanted to, because he knew his son couldn’t handle it. He shared that his other son has ADHD and that he learned after 15 years that yelling does not work [insert sad trumpet sound]. He said he knows that parents push their kids, and they should–when it comes grades–but not when it comes to football. At this point, I felt pretty much awful. I yelled AND I was pushing him to go to football! However, I truly didn’t even want him in football, so I was definitely not pushing him to participate in football; I was just trying to get him to follow-through with the commitment he made. I still don’t know when that line of pushing or letting him decide what happens should start and when it should stop. In the end, that coach was amazing. He told Cameron that Cameron’s number one concern should be his happiness, followed by grades, then followed by football, if that’s what Cameron thinks should come next. He told Cameron to take a break– that it’s not that big of a deal, and that it’s okay, and that the coaches won’t be mad at him if he misses a couple of practices because he is feeling so overwhelmed.

In the midst of all of this I realized that I was going to be over an hour late for dinner with a friend. I only realized this because she called me after I was 20 minutes late, making me feel even worse about all that was going on. Then I realized that I had forgotten about dinner for a very good reason, and that was that Cameron needed me there in those moments even if I wasn’t doing the best parenting job in the world. I was still present for him and not preoccupied with the fact that I was late for dinner.

When we got home, Jon was clearly unhappy that Cameron did not stay at practice. The whole night was basically destroyed for the family, as Jon was infuriated while I escaped to dinner with my friend–which I think was probably the best option for us all at that point. It didn’t occur to me until I got home that Jon had been dealing with the aftermath of this on his own. However, while I was unhappy about the meltdown, Jon was unhappy that Cameron didn’t go to football practice. I was also worried about the choice that we had made to move our kids– at that point I was very much doubting whether or not the move was the right choice, even though Cameron hadn’t had a lot going on for him at the old school, where he was frequently bullied and came home crying. I was also just feeling really sorry for Cameron and for my reaction to him when he really needed me to be more understanding. However at that point, Jon was focused on how Cameron spent the rest of that evening walking around “smugly” because he got what he wanted and his coach agreed with him. I didn’t see that because I wasn’t there. Our differences in opinions and perspectives left me feeling like I couldn’t talk to my partner about the most significant situation that had happened in our family– the move and its effects on our children. My frustrations were exacerbating Jon’s frustrations, leaving him to think that I was angry with him when I wasn’t.  The fact of the matter was that this was a big move for all of us, and my emotions about the move–whether or not I thought it was a good move or not– were directly related to my children’s emotions. Because they were having a bad week, I had guilt about it. I can now say this was a good move for our family, but it’s been nearly a year now.

It’s almost football season again. Upon reflection of this awful day, Cameron has decided not to join football this year. He wants to be in cross country too, and he was too overwhelmed when he did both. He liked the football games, where he rarely played, but didn’t really like the practices. It’s a lot of work and he recognizes that he doesn’t want to do it. Whew! We think he’s more of an individual sport kid anyway, although there are other team sports he’d like to try. While this could have been handled better, and while it put strain on the relationships in our family, the positive outcome is that Cameron is able to recognize his needs and make a decision based on them, even when I couldn’t. Cameron I Am persists!

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo! Want to join in on next month’s Sensory Blog Hop? Click here!

An InLinkz Link-up

Confessions of a Mom Who Signed Her Son Up for Football (Don’t Bother Judging Me, I’m Already Judging Myself)

The football obsession started before his first game in 2011.

Please allow me to explain myself. Perhaps I’m just trying to make excuses or make myself feel better, but this anti-football (until high school) mother just signed her sixth grader up for football, and I’m still a bit sick to my stomach about it. I’ve read the articles about the dangers of football and passed those articles to my son to read. So why did I do let him play this year when I’ve told him no for the past two years? Honestly, his Nonverbal Learning Disability (NLD), with the Sensory Processing Disorder (SPD) and ADHD sprinkled in is why.

This summer, we moved from a place where Cameron knew to a place he doesn’t. He started middle school this school year with not one soul he knows. He does not do well with change, so I thought he’d be the one struggling most with the move, but it turns out his seven-year-old sister was the one crying like I’ve never heard her the night we said good-bye to our house. I should add that we moved only 20 minutes away from our old house, so the kids still go to visit the old neighborhood, sometimes as often as once weekly. I should also add that Cameron’s best and maybe only true friend also moved away from the last district, so Cameron was going to have few solid connections with friends he could trust at his old school.

After the move, Cameron seemed to transition well, although he told me that while he may look fine, he feels like crawling into a ball and screaming most of the time. And he did have some rough days a couple of weeks after the move where he was relentlessly mean to and critical of his sister. He made us promise to never move again, partially because it’s been difficult and partially because he says he loves the new house and he’s happier than he’s ever been. We moved from a tri-level with a one-car garage and close neighbors to a two-story colonial in a small neighborhood with big wooded lots situated in the middle of a country field, and he loves the space. He loves having room to move and run and play. He has even met another kid in the neighborhood and they seem to get along well.

So I signed him up for football because of all of this. I didn’t realize until after I’d done it that this town is hugely into football. This made me very nervous since subcultures freak me out, and I think some parents with kids in sports are dangerously close to a subculture. But I signed him up so he wouldn’t go into his first day blind; he may actually know some kids when he starts school. I signed him up because I know how he struggles with social situations and I want to arm him with everything I can to help him fit in a little. I signed him up because we actually missed the deadline by a lot and he cried and said he knew kids who play sports are more popular and that might help him. I signed him up because someone from the team called us to let us know he could still join even though we were way past the deadline (like by months), and the 3% chance I told Cameron he had to play actually happened. I signed him up because a mom once said to me that her sensory-seeking fifth grader was joining because it was actually a place that he could run into things without being told not to. I don’t have to tell Cameron to keep his hands to himself in football. I signed him up because he is football-obsessed and has wanted to join for years. And maybe the kids on the team will accept him for who he is and maybe even become his friends—even if only one does, it’s a win for our family.

His first week of football, I made a decision. Last year he played flag football and the coaches were really hard on him. They expected him to read a map of plays off his wrist, which works for most kids but not for someone with processing issues. He didn’t know where to go until he actually ran the plays several times, and then he was actually pretty good. The coaches didn’t know how to work with him though, so they were frustrated, as was Cameron. It was painful to watch. This year I made a choice to tell the coaches about how he learns best. When the opportunity arose, I explained his processing issues and that he will learn the plays but may take longer than other kids. I explained that what he has is a “cousin” to Asperger’s and may have actually been diagnosed as such depending on the psychologist. The coach’s eye lit up at this and I felt like I struck a chord. I know that NLD is not Asperger’s but when it comes to explaining it to people who don’t know, it’s easier to say it’s a cousin to it than trying to list all of the things that NLD means to our family. People know Asperger’s; they’ve usually never heard of NLD.

Because Cameron was late to start, he wasn’t allowed to do any contact for his first five practices, which is the norm. This put him right up to the first scrimmage. He forgot to tell us that he had to be there at 7:15 for his 8:00 am game, so we rushed him out the door in 15 minutes immediately after he woke up. Even at 7:15 we were sweating in the sun, watching our recently-awakened son stare into space as the team ran through plays he didn’t know because he hadn’t received the playbook via email because, again, we were so late to sign him up. My husband, Jon, grew frustrated watching Cameron stare at the other teams, the trees, the sky, anywhere except where he should be, so when it was Cameron’s turn to practice a play, Jon actually had to walk away. We heard how the coaches were yelling at the boys for not doing what they were supposed to, and we were prepared for that to happen to Cameron. Natural consequence. Then a miracle happened. When Cameron was up, the coach went to him, looked at him, told him exactly what to do, and said he’d stay there with him while he ran through the play. Cameron caught the ball and had to be reminded what to do next, but was rewarded with “knucks” and a pat on the back from his coach. I cried. I mean not just tears welling up in my eyes, but straight up crying. Who knew such a simple act could conjure up so much emotion? Those little things count so much when you have a child with challenges in any way.

At the first opportunity I had, I thanked the coach and told him how much it meant to me. This is the part that gets a bit hairy… He said he knows Cameron has Asperger’s so he’s going to learn it differently than other kids and some kids don’t respond to his intensity so he is able to bring it down for them. I did not correct him. Literally as I write this, my son is at football practice where they think he has Asperger’s because of me! I didn’t write that on the form I filled out, I wrote NLD, ADHD, SPD. But I’m assuming they didn’t read that. Does this mean I have Munchausen by proxy?

I knew I’d read somewhere that Asperger’s are NLD are interchangeable, so here’s what I found on “NLD on the Web”

(http://www.nldontheweb.org/nldadvancedreading/aspergersdisordernld.html)

       “There is clearly a great deal of overlap between Aspergers Disorder (AD) and Nonverbal Learning Disabilities (NVLD), so much so that it is possible that the symptoms of each describe the same group of children from different perspectives—AD from either a psychiatric/behavioral perspective, and NVLD a neuropsychological perspective. The specific conventions of these diagnoses may lead to a somewhat different group of children meeting diagnostic criteria, but it is not clear that this reflects something ‘true’ in nature. That is, it may only be convention that separates these two groups.”

So that means I’m in the clear, right? It is important to me that he Cameron is accurately “labeled,” but maybe here it doesn’t matter because it’s semantics. Whatever I said to the coaches, they’re seeing it in Cameron and they are helping him grow because of what I pointed out to them.

I should add that the other parents are not a subculture, but rather they sat with their bags of food and sun umbrellas for four hours in the 90 degree heat and watched their sons without saying too much. That made me feel better too. I am so hopeful that the move we made will be a positive one for both of our kids. It was the most emotionally draining, physically exhausting summer ever, which may explain why I had influenza as I wrote this post. So far, uprooting our family seems like a step in the right direction, but it’s too early to know for sure. Cautious optimism…

Patience– Easier Said Than Done

According to WebMD, “Executive function is a set of mental skills that help you get things done. Executive function helps you: manage time, pay attention, switch focus, plan and organize, remember details, avoid saying or doing the wrong thing, [and] do things based on your experience.”

Now bear with me for a paragraph. I have five parenting “guidelines,” if you will, that I feel may be key to helping a child persevere into becoming a productive member of society. In no particular order, they are: 1. Family, 2. Travel, 3. Spirituality, 4. School Involvement, 5. Volunteerism. While I did make these up, and I may have them in my mind, as a family we are not always all that great at following through with them. I am genuinely hoping that this doesn’t mean I’m raising future cat burglars or worse. With that said, I think we’ve got the family and travel guidelines down, and do pretty well with spirituality and school involvement most of the time. We have lacked in our volunteerism. Have we volunteered? Yes. Cameron has worked with us at a church to serve a community meal to anyone who needs it. We’ve raised money for family members in need by organizing a rummage sale at our church and have donated items to Goodwill, the animal shelter, the food pantry, a women’s shelter, and more. So yes, we do okay, but it’s not very consistent. I have been working hard to try to get our kids more involved with helping the community and an opportunity arose one weekend, so I took it.

A mass email was sent out at work, looking for people to help at a local food pantry, just to check expiration dates and sort food. I asked if my seven and 10 year-old would be able to help and was told that the 10 year-old should be able to sort food without a problem, but they don’t want anyone to get hurt since it’s in a warehouse. I heeded the caution and took the kids. Sorting food? No problem! Sorting is a skill my kids have! Their rooms may not look like it, but I have seen them sort socks, sports cards, and Pokemon cards, not to mention the fact that they have recently become interested in finding food expiration dates. This would be an easy way to help the community!

We arrived in good spirits after a great car sing-along. As we pulled into the parking lot, there was an open garage door with the sorters working diligently and very quietly. I mention this “quiet” thing because my kids are anything but quiet, and there was an unexplainably awkward and silent vibe in the room. We were met with stares and silence as we approached the sorting box. I knew only a couple of the people there, but that wasn’t a problem. Someone quickly explained the task and we dove in with little direction, as the task was pretty simple: Take cans out of the giant box in the middle, check the expiration dates, walk to put them in the appropriate boxes surrounding the giant box– corn with corn, Spam with meat, etc. We got to work.

If you’ve ever worked in a restaurant or even with other people in your own kitchen, you know that there is a flow to the movement. You are always moving, as are the people around you, and you are aware of where they are as to not get in their way. Yes, there are always mishaps, but you apologize and quickly keep moving. This was the way the dozen or so people were moving from box to box, quickly and quietly like drones set to do work for the people.

Grab a can, check the date, walk to a box without running into other people. Easy, right? Umm. No… Not so simple for someone without executive functioning skills… It quickly became clear that this did not come naturally for Cameron—he was the Goldilocks of food sorting.  First, he was too fast, checking dates while turning and moving and never stopping to see who or what was around him. He ran into person after person, barely noticing when he pinballed off of them, leading me to offer constant direction and reminders while navigating the warehouse for myself as well. Next, he was taking his sweet time because he kept looking for specific foods that were not easy to find. He sat at the edge of the box, arms dangling in, pushing cans aside while looking for whatever particular unpopular item he wanted in that moment. I offered to help him—he finds the food and I put it away or I find one particular food and give it to him to run back and forth. He did not want this. It had to be his way, and he was soon making it clear that he was unhappy by whining about being thirsty, tired, because he didn’t like it, etc. I felt as if I needed to do double work to make up for the fact that Cameron was more than likely slowing down the operation. We took a break while they brought another box of food for us to unload. Cameron complained loudly enough for everyone to hear, while I tried to explain that this wasn’t something for him, but that we were helping other people.

We stayed for the second box, with Cameron still unloading it absent-mindedly with no attention to others—even those standing directly behind him. An added bonus during the second box, however, was the extra dose of arguing. Cameron’s sister, Amelia, said she wanted to find all of the tuna in the box (which was an easy-to-find item), and other people heard her so they’d hand her the tuna they found as well. Naturally, Cameron decided that he, too, was going to find the cans of tuna and make sure Amelia knew every time so she’d say, “No Cameron! I want to find the tuna!” I’m pretty sure I have the only kids in the world who can argue about cans of food to sort—tuna cans.  Really?

After the second box was empty, I quietly gathered my kids, walked to the car, and imagined the change in energy and flow in the warehouse after my cherubim were gone. Was this a total disaster? No. Was it embarrassing? Slightly. Was it a learning experience? Definitely. This was very hard for Cameron.

What I’ve come to understand more recently is that whatever label Cameron has–ADHD, SPD, NLD– his main “disability” is in his executive functioning skills. Things that I don’t recall being “taught” to me have to be explicitly taught to him. Case in point, this same weekend, I was encouraging him to do the dishes, which is another entire set of difficulties. There’s the sensory issues that cause him to be disgusted with touching food from the plates, in addition to the fact that I literally had to walk him through every step of the dishwashing process, down to the hand he uses to hold the plate and the hand he uses to hold the scrubber. I thought I was being pretty patient walking him through a task for 15 minutes that would have taken me five minutes or less. Apparently, however, I didn’t sound as patient as I thought because he said, “I hope when I’m a grown-up, I don’t have a kid like me.” Heart. Broken. Seriously, I think a tear just snuck out of my eye as I wrote that.

I am not a sugar-coater (unless there’s something that literally is better coated in sugar, then I’ll sugar that sh*# up like crazy), so what I’m about to say may not be pretty, but it is the truth… It is hard to have a kid like him, and he knows it. But I would never, ever change who he is. Also, I don’t think it’s “easy” to be a parent to any child. Every child has his or her own struggles and it’s their parents’ jobs to help deal with those struggles. Everyone has their stuff… it’s what makes us who we are.

As this kid’s mom, I know that there is nothing I can do to “fix” his executive functioning skills, but I can help him excel at things I know he can do and walk him slowly through the things that are difficult so they become more routine. More than anything, I need patience. I need to not expect him to do difficult tasks when we’re in a hurry. I need to realize that if I want him to learn to do certain things, it’s going to take many more times for him than it took for me to learn, and I need to provide him with that time. I need to build up his self-esteem like crazy whenever I can, because he knows about his struggles and they make him feel different.

I hope Cameron does have a kid like Cameron when he’s a grown-up because who better to understand what it’s like to have this particular set of struggles than someone who’s gone through it? Even more than that, I hope Cameron has a child like him because any parent would be lucky have a child as sweet, caring, smart, and generous as Cameron.

 

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo! Want to join in on next month’s Sensory Blog Hop? Click here!

Bullies: An Uphill Battle

Sometimes I wonder if it’s more difficult for the victim of bullying or that child’s parents. I mean, obviously I have experienced the emotions that bullies evoke as a child who was bullied and it’s terrible, but watching your child be bullied is also pretty terrible.

I hear a lot of stories about kids getting bullied. My child is in 5^th grade and does not have the maturity to handle a phone or any sort of computer that he keeps in his hand. I am not judging other parents who choose to provide their child with these things; I know I could have easily been trusted with them when I was 10, and I know my husband could not have been. I know Cameron is not emotionally ready. Today I heard about a child being bullied via Instagram, with one child writing that this child is a “loser” and then this post being “liked” by 40 people. That makes 41 students who lashed out at one child. These kids probably would not have considered bullying him in person, but when it comes to doing it on the Internet, it’s a lot easier to join the bullies than risk being bullied. And this child who was bullied is a “cool” kid. Imagine what it’s like for any child who’s the least bit awkward.

I recently needed to call Cameron’s principal to talk with a group of students who are bullying him. I do not call often. In fact, I’ve called probably three times in the past five years, so I do not make it a habit. We try to teach him skills for dealing with bullies on his own, but sometimes his Nonverbal Learning Disorder (NLD) really does prevent him from making good decisions when it comes to people. He could choose to sit in a different place on the bus, where he would be less likely to be bullied, but he doesn’t want to because he feels like they should move since they’re the kids who are causing the problems. He’s actually right, but every day he sits near them and sets himself up for more teasing. The other frustrating thing about his NLD is that we don’t know if they are actually teasing him or if they are just joking around like kids do. He could be misreading their facial expressions and tone. Either way, he perceives that they are being mean-spirited, so even if they are joking, his emotions affect him like they are being mean. This happens in other situations too. He has come home from school saying his teacher was mad at him, so I asked if it was possible that she wasn’t mad at all but she was just stressed and he wasn’t reading her emotions correctly due to NLD. He admitted that this was a possibility, but it doesn’t change the fact that he feels like she’s mad at him, which upsets him. Frankly, even though his feelings are often inaccurate, they are very real to him.

So while I never can be sure if the kids are joking around or not, I do have lines that I draw where I break down and call the principal to tattle on these kids. The first time I called was because Cameron was being called “gay” (which greatly offended him because we have family members who are gay, and if he felt like he was actually gay, he would just tell us and it would not be a big deal) and “Nazi” because we have German ancestors. I felt like I had to call the principal in the name of human rights. The second time was because they were teasing him about being a good reader (you read that correctly– they actually pick on him for reading. At the risk of being a bully to them, they are super LAME), but were adding in some really inappropriate sexual things about private parts since he had admitted that he had a crush on a girl who he considered his “girlfriend.” This made him very uncomfortable and embarrassed, so I called partially because it was rude to him and the girl, bordering on harassment, and partially because they knew way too much about grown up things (like strippers!!) for 5^th graders to know; I was actually concerned that these kids’ parents should know what their kids were talking about. The last, relatively recent, time I called was because he came home crying because one kid mimicked him, flapping his hands in the air and making silly sounds, saying, “I’m Cameron in a bookstore!” Cameron said he was acting like “a drunk idiot.” This made Cameron very upset, because he knows that sometimes he does get excited and flap his hands and speak in a silly voice. It was straight-up bullying, and it isn’t okay.

Because I have called the principal and because there was a time last year that I got very upset with kid in the neighborhood for unrelated reasons that don’t need to be rehashed here, the kids call me a “female dog.” Basically, I have made it worse for him sometimes, and he does not like when they call me names. So my choices are to watch my child suffer or step in and try to help from afar and still watch him suffer. It’s a complete lose-lose.

Sometimes when I am at a school function and I see these kids’ parents, I don’t know how to react so I don’t say anything. But here’s the part I don’t understand. If I got wind of my child teasing other kids and I saw those parents, I would probably approach them. I would apologize. I would make sure Cameron apologized, too. Instead, I feel like I’m a narc. Those parents barely make eye contact with me and I feel like I’m an outsider amongst them. The kids are mad at Cameron and the parents are mad at me.

I think it’s hard with Cameron because he looks like a regular, adorable kid. His struggles are not obvious unless you really talk with him. He can be a great friend and teammate but can also be extremely awkward. This awkwardness includes a goofy, fake smile, short-strided tiptoe walking, and “T-rex arms” with a quick, silly wave when he’s nervous or excited. It includes having his hands in his mouth or somewhere on his face any time they aren’t actively engaged in something. I’ve watched other boys his age and have noticed that it’s not just him; many of them are socially awkward. So why is Cameron such a target? After doing a lot of thinking and observing, I think the reason that he is so often a focus for bullies is that he sets himself up for it. He doesn’t know when to quit. He doesn’t know to just keep his head down and be an observer. He frequently calls kids out on the “right” and the “wrong” because he wants to tell everyone how to follow rules, even if he doesn’t necessarily follow the rules himself. One day, he told me that the kids on the bus swear, to which I responded, “Yeah… that doesn’t surprise me.”

“Aren’t you mad about that?” he asked. He clearly wanted me to be enraged by the fact that 5^th graders swear. He wanted me to react like I would if he swore in front of me, since that is a rule, after all.

“What can I do about it? I just hope you make the better choice to not swear,” I responded. He just does not know how to stay quiet and let those kids be. But the flip side of this is why would I want him to stay quiet and let kids be? Don’t I want him to be strong and make good choices? His heroes include the Dalai Lama, Gandhi, Martin Luther King, Jr, and Abraham Lincoln. These are all people who have stood up for what they feel is right. So if my son wants to emulate these people, I am proud. Unfortunately, I fear that he’s not emotionally capable enough to deal with the backlash that occurs when you do stand up for what’s right. By no means am I saying my child is equivalent to these great people, but on a smaller scale, he does want to do the right thing.

Which leads me to another, related rant… Do I really want Cameron to be “cool” by today’s standards anyway? From what I know of “cool” these days, it isn’t what we do in our family. We are old-fashioned. Right or wrong, this is who we are, and it’s difficult to maintain this when very few of our kids’ friends’ parents are raising their families like we are. Our children watch TV once weekly on “Family Movie Night.” Cameron has started watching TV for about 30 minutes two other times during the week with my husband and I, but that’s it. They rarely play video games. They do not have iPods or iPads or computers of their own. Cameron does have a Kindle that is very controlled and has very few apps. We have family dinners nearly every night that do not include a television (except on Family Movie Night). We cook a lot. We expect the kids to help around the house, which is a constant argument-maker. We don’t sign our kids up for Little League because we like doing stuff together in the summertime. Not to say they don’t do activities, but we limit them because we like hanging out with them right now. We are close. There are times that literally all four of us and the dog are in the bathroom getting ready for work/school at the same time. We read a lot. We strive to be nerds. I recently read Mindy Kaling’s book Is Everyone Hanging Out Without Me? (And Other Concerns) and was moved by something she said. She spoke to the fact that when she was in school, she liked hanging out with her family. She knew she was supposed to do well in school and didn’t mind; it was just part of her life. Being cool was not something she really wanted or cared about. This is how I hope we are raising our children. It’s hard to do–very hard by today’s societal standards.

I do not have an answer to this bullying problem. I try to teach kindness, gratitude, empathy, mindfulness, and strength to my children in hopes that they will not be bullies and that they will learn to appropriately deal with those who bully them. I also “mean mug” those bullies whenever I see them so they know I know. I am only human.

**** In an attempt to keep Cameron more anonymous, I was planning to change his name in all of the blog posts. When he heard this, he told me he does not want me to change his name. He was actually somewhat offended that I’d do that. So he’s still Cameron for now.***

 

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The Date That Never Was

There are times that I think I am hypersensitive to any differences that Cameron has, and therefore I, in essence, “gave” him Nonverbal Learning Disorder. It doesn’t matter that a psychologist spent hours testing him and then explaining results to us, while waiving some of the fees due to the fact that he spent much more time assessing Cameron than originally planned. It doesn’t matter that the said psychologist had to do so many extra tests (11 tests in all) because he kept finding “holes” in various pieces that make up Cameron—processing skills, executive functioning skills, visual memory, pragmatic language, etc. Even though I have pages of reports that prove that he truly does have this disorder, I still think I’m somehow projecting it onto him. There are times that I think I made something that wasn’t really there, especially when so many friends and relatives look at him like he’s so “smart” and “polite.” Then there are days like Saturday and I am reminded that I did not make this up. This is real and it is difficult–for Cameron and for the rest of us.

I am not going to lie. My husband and I spend much more time away from our children than other parents I know. We love spending time with each other, and sometimes the only way we can cope is to get away every now and then. This month, in particular, feels a bit more full than usual, with two overnights planned with grandparents while we have dates—once with just the two of us and once with friends. It’s not rare for the kids to spend the night with grandparents, but it usually doesn’t occur quite so frequently.

The first overnight was Saturday night. Jon and I were going to have a solo date at a restaurant where we’ve never before eaten, followed by a night without kids or the dog. Before the date, we split the kids up for the day, with Cameron going to a Sports Show with Jon while his sister and I delivered Girl Scout cookies all around the city. We met up at home with only a couple of hours before we were expected to drop off the kids at my in-laws. After an amazing day with Cameron, my husband expected that he’d be able to ease him into spending a night away—usually he does okay with this, but sometimes he complains. What we didn’t take into account is Cameron’s hatred of change. Since he had such an amazing day, he was most likely sad that it was over. When Amelia and I entered, it was really over because his alone-time with his dad was done. He started in on Amelia the second we walked in the door from the exhausting eight-hour day of cookie deliveries. Everything she said, he contradicted with a disgusted face. He instantly tried to parent her by telling her what she could and could not pack for their grandparent’s house. I admit it. I am not good in these situations. I have read (and continue to read) so many books trying to teach me the “correct” way to address this—let’s call it what it is—bullying, but I always seem to find myself going right back to my original reaction, which is frustration. I try to talk to him calmly, I try not to take sides, she starts saying mean things back, I try to explain why that’s mean, he interrupts me to explain why he is in the right…

Let’s pause here for a moment. Cameron’s arguing is exasperating. When I was in trouble as a child, I SHUT.UP. Cameron does not know how to shut up. He will not do it. While we try to explain why what he did is not acceptable—even if it’s for five seconds—he interrupts to explain why it is. His volume goes up, ours goes up, I try to walk away, he keeps arguing. UGH! It is actually even worse than I can write. The arguing and the lack of accountability! Oh, but we’ll get to that accountability piece…

So anyway, I was lying in bed. My stomach was a bit upset from the giant burger I ate for lunch and I was panicking a bit since everyone I know has the stomach flu. I could hear the drama that was occurring. I could feel the aura of arguing and frustration and I could hear Cameron saying, “I don’t want to go,” a million times. I could hear him say he wished there were more things for them to do at his grandparents’ followed by him yelling at his sister to not pack an extra bag of things to do because she’ll forget it all the next day. He told me he didn’t have pants to pack. Then he didn’t have underwear to pack. And every time I’d give a suggestion, he’d tell me why my suggestion wouldn’t work. He just did not want to go and he was going to make the entire house miserable until we all knew it.

So I called the kids into the bedroom with my extremely tense and frustrated husband, who was at his breaking point. I calmly explained that they were to stop arguing and were to finish their packing, which was met with more arguing. Finally, Jon said, “Fine! You’re not going! Instead of going, you will clean your rooms tonight!” Cue the tears.

This could go on for several more paragraphs just expressing what happened when Hurricane Cameron entered stage left, but I will keep this short(er than that). Cameron was mainly angry because Jon “made the decision” for them. Dad chose that the kids weren’t going, and the kids didn’t get to choose. It was Jon’s fault because this is what he said was happening. When I mentioned that Cameron said a million times that he didn’t want to go, he said, “No I didn’t!” Ummmm…. Except he totally did. A MILLION TIMES! I said this, and he responded with, “Yeah! I didn’t want to go but I wanted to spend time with them! [umm, what?] I’m sure they’re crushed! Dad really [he air quotes here] ‘made’ their night!” When I said I’m sure he was feeling a bit guilty, he responded with, “NO! I’m angry! And Sad!” What I am leaving out here is his tone and volume. He has become a screamer. He was screaming at me, but I calmed him down. He was a step above screaming (what would that be? Exploding? Shrieking? Caterwauling?) at Jon. I could not believe the attitude, lack of accountability, ingratitude, and lack of respect that was coming out of my son, especially after he had just had one of his “best days” with his dad.

Fast forward 30 minutes or so, when I felt he was ready to talk this through. Three things I wanted him to learn from this were: 1. Never, under any circumstances should he ever, ever talk to anyone with that tone, volume, and disrespect again; 2. He needs to work on being kinder to his sister; 3. He needs to take accountability for his role in the events that occurred that night. I would not need a blog through which to vent if this conversation was met with open ears. Instead, I learned about how his sister is mean to him, too, how it’s not his fault, how Dad yells at him, and on and on and on. In the end, though, that 10-year-old’s head was on my lap and I was rocking him because it wasn’t that he would not calm down, it’s that he could not calm down. I was taken back to when he was seven years old and I looked into his eyes to see that his emotions were out of his control.

I suppose we all get that way sometimes. I suppose it’s better that he’s out of control at home than at school or at his grandparents’ house, which, truth be told, is one of the main reasons we could not send them there. It would not be fair to expect them to referee our savages while they argued their way to bedtime. I am well aware that other children are like this and that children without any diagnoses do similar things. But this is my child. This is the child that I have spent so much time trying to help him cope with these things and be more appropriate and accept responsibility, and when this happens, I feel like I’ve failed. That’s the truth. As I’m writing this, I see the million and one things I could have done differently from start to finish. I am on a constant journey to do better—parent better, listen better, discipline better, etc. But I’m still here. I’m still struggling. I don’t know if we’re any better off than we were when we didn’t have a diagnosis or we didn’t spend hours in occupational therapy or social skills group or seeing a therapist. Sometimes it feels like it’s been all for naught.

Cameron did calm down eventually that night, but Sunday was only slightly better. So what is my next step? I have a stack of eight parenting books on my nightstand that I’m planning on reading, but I don’t expect to find anything life-altering in them. I think my next step is to take each day minute by minute because if I think that this will last for the next eight years, I’ll go crazy; and considering the fact that I have eight parenting books on my nightstand, I think I’m crazy enough.

 

 

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