Memory of a Meltdown

14 06 2016

Parenting-Quotes

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!

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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!





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

5 10 2015
The football obsession started before his first game in 2011.

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

21 07 2015

patience quote

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.

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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!





Happy 10th Birthday!

5 08 2014

10th Cam

Guess who is turning 10 today? Cameron… He’s 10! What a long road it’s been so far, full of long days but really short years. For his 10th birthday, it feels appropriate to list the top ten things I love about him (in no particular order).

1. I love what an amazing reader he is. He’s a faster reader than I am and reads things I would have thought to be super dull when I was his age. When I was 10 it was all Judy Blume and Beverly Cleary. He’s all Abe Lincoln, JFK, Civil War, and Temple Grandin with a side of Roald Dahl and Harry Potter. Also, his ability to recall the information found in the books is something rarely seen in real life.

2. Cameron is so smart (probably from all of his reading) that he constantly puts us to shame with his knowledge of weird, random facts. He’ll tell you how Lincoln’s dad died a minute after he schools you on which spell does what in the third installment of Harry Potter. Now if we could just get him to apply the facts to real life situations!

3. Cameron is compassionate about things and people he loves. He is a loyal (albeit bossy) friend and an incredibly loving son. He’s compassionate about history, science, Tom Petty, and the Packers. When he loves, he does so with all of his heart and he doesn’t hold back.

4. While at times, it can be overwhelming, I love that Cameron is a sensitive soul. When he was a newborn, I worked with a lactation consultant and physical therapist to work on some of his sucking issues. In the end, we determined he had acid reflux and was also sensitive to dairy. The physical therapist said typically babies with milk issues grew into sensitive people. She was right. Cameron doesn’t like violence in movies or video games (but can tolerate factual violence when reading about wars—of course it’s not as graphic when it’s in his head instead of on a screen). He cries easily, hugs often, kisses on the lips, and attaches himself to people who show him love.

5. This one is a good one… Cameron is totally accepting of his NLD/SPD/ADHD, and is not afraid to talk about it. He is a great self-advocate and has learned what he needs to help him get through his days. I teach students with hearing loss and am constantly trying to make students understand that if they can talk about their needs and their hearing losses, other people will understand better. Cameron just gets this! Sometimes he gets it to a fault like the time a new kid moved into the neighborhood a few years ago and Cameron showed him is room, then casually mentioned the fact that he still wet the bed. That kid never came over again. So, we’re working on the filter, but proud that he’s so willing to talk about his stuff.

6. I love that, with advance warning, Cameron will almost always roll with whatever our crazy schedules bring our way. He’ll try waterskiing without an issue, he’ll go to new restaurants, visit new places, and stay in new environments. He doesn’t care, as long as we’re there with him. For a kiddo with some pretty rigid thoughts, he’s able to go with the flow better than expected.

7. Cameron’s sophisticated taste in foods is something I adore. He loves blue cheese, jalapenos, goat cheese, hot sauce, black olives, egg rolls, and I’m pretty sure he’d like sushi but I keep offering and he’s not quite there with me yet. That’ll happen soon, though.

8. Thank goodness Cameron has a good sense of humor. If he didn’t, I’m certain that someone would have called Child Protective Services on me by now. I tell him I’m going to “cut” him if he doesn’t stop fighting with his sister sometimes. I recently told him that I should probably not say that, since it’s totally inappropriate. His reply was, “I think it’s funny.” Whew! You may be currently judging me about that, but he doesn’t!

9. When Cameron is away from home, his manners are impeccable. People are constantly telling us how polite he is.

10. Lastly, I love that Cameron is an old man in a 10-year old body. He’d be perfectly happy listening to his favorite music (which includes Tom Petty, the Beatles, Bob Marley, Michael Jackson, Dave Matthews, or Imagine Dragons) or reading a book outside with the dog at his feet. He enjoys identifying birds in the backyard and watching nature shows on TV. Before we know it, he’ll be talking about the weather and how he knows it’s going to rain because his knee is acting up again and how at least he’ll catch the 7:00 news after his 4:00 dinner at Denny’s.

I’m lucky to say that I get to be Cameron’s mom! I can’t wait to see what the next 10 years bring. Happy Birthday, Cameron! xo

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Success!

10 06 2014

 

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“Success” is obviously measured differently in every situation, especially for kids with SPD, NLD, ADHD, or whatever other label with our without a “D” you may have heard of. Some people are perfectionists and never really feel successful. Some people are constantly waiting for someone else to notice their successes because they don’t feel real unless someone else acknowledges them. I’m a little of both of these kinds of people. This makes it difficult to parent a child with the struggles that Cameron has. I take his ups and downs and my reactions to them very personally, wondering what I did to make that situation happen, what methods of behavior or diet I haven’t yet tried, what books I haven’t yet read that may help, how my tone escalated the situation, how I didn’t spend enough time with him today, how his routine changed and I should have done better at transitioning him… I make myself crazy with all the things I feel I should have, could have, or would have done differently if only (fill in the blank), making it very difficult to stop and enjoy successful moments.

My favorite parenting book, Raising Happiness by Christine Carter, Ph.D, is all about steps for happier parents and kids. The first chapter is about putting on your own oxygen mask first. That is essential for parents with kids who have any sort of challenges (and for those who don’t) because if you don’t take care of yourself, then you’re not able to cope well enough to take care of anyone else. This is why I plan one date each month for just my husband and me. This is why I get together with friends as often as I do, even though the over-scheduling I do to myself makes me overwhelmed. This is why I spend more time than I should on Pinterest. This is why I occasionally go to ridiculous dance clubs and dance satirically in the style of 1990’s boy bands.  It’s all to have some semblance of who I really am when I’m not attempting conversations without arguments, making homework modifications at home that really should have been done at school, or watching my son start another argument in the neighborhood without realizing he’s the cause. Without taking care of me, I am less successful taking care of my children.

Today, though, I want to put myself first in a different way– by putting aside my own feelings of inadequacy and congratulate myself (and my husband) on the parenting successes we’ve experienced. One success we had this week was that Cameron was invited to a birthday party for a friend at school. A really nice friend! Score one for Team Cameron! Another success from this week is that he has brought home good behavior notes on his modified check-in sheet he does at school every day so far. Also, there were one or two times this week he admitted he was wrong about something, which is a HUGE success since it almost NEVER happens. Cameron had a really great sleepover with a family friend last weekend, who went on and on about how polite he was and how he was all “PSA” on the kids about why violent video games are bad.

However the biggest success of all, which literally brought my husband and I to tears, happened this weekend. We picked up a new puppy this past Sunday, so spent Saturday preparing for a puppy. We cleaned, puppy-proofed, and visited the pet store, where my husband said it was time to choose a name. You see, the naming of the puppy was a big deal in our house. A slew of names were thrown into the ring, including Frank, Fletch, Mr. Bojangles, Cricket, and Cameron’s very favorite, Klaus. Cameron really wanted a German name (because we were getting a boxer), and was obsessed with the name Klaus. He would not let it go. He told us a million times that “Klaus” was his favorite name. I really didn’t like the name “Klaus” at all and wasn’t a huge fan of most of the other names that made it into the final choices, but surrendered my favorite names and explained that Cameron needed to do the same with “Klaus.” There were tears. Several times. But he did let it go, and eventually we whittled the list down to “Felix” and “Clyde.” Cameron’s obsession moved from “Klaus” to the only other German name on the list:” Felix.” Due to the fact that I’ve not been able to make a solid decision ever (seriously… my first grade teacher even said that’s something I needed to work on), I couldn’t pick between the two names and the vote stood at Felix: 1; Clyde: 2. Naturally, “Clyde” was my daughter’s first choice, so I felt as if I was choosing a favorite child if I picked one name over the other. Eventually, though, in the middle of the pet store, I admitted that I preferred “Clyde,” which left the vote three to one, with “Felix” losing. Tears again. I looked at my husband and said, “See! This is why I can’t decide! I’m going to break one of their hearts!”

To which he responded, “Well, you put yourself in this position! If you would have just decided at the beginning, then the vote wouldn’t be left up to you!”

“You’re right!” I replied. So, we decided to flip a coin. Heads would be “Felix,” tails, “Clyde.” One toss. The coin would land on the floor. Rules needed to be established. Cameron LOVES rules. In slow motion, my husband threw the penny into the air and it landed with a loud “tink! tink! tink!” in the middle of the dog food aisle. And the name was… Felix! It wasn’t until that moment that I realized how much I didn’t want our dog to be named “Felix.” Three out of four family members were not satisfied with the name. We realized the coin-tossing was not democratic and was not the best way to make this decision, but that was that. The coin had spoken. Three defeated family members walked like Charlie Brown towards the tag engraving machine.

And then… a miracle. Cameron said, “Fine. We can name him Clyde.”

I really didn’t believe he said that, so I didn’t react until my husband said, “Did you hear that?! I am seriously almost crying right now!” and it really sunk in. Cameron COMPROMISED! Holy s*#t balls. This news was equivalent to the Berlin Wall coming down! Hugs ensued, followed by Cameron’s choice of new toy for the dog, and ice cream to celebrate the biggest success we’ve seen come from the Cameron Camp in a long time.

Were these good moments sprinkled in with not-so-good ones? Absolutely. But I am really trying to change my perspective to celebrate good moments instead of zooming in on the difficult ones. Like everything else I try, I’m sure it will pass, but I wouldn’t feel at all successful if I didn’t keep trying to make positive change by celebrating Cameron’s successes with him and without him, when I “put on my own oxygen mask” which is actually wine.

Epilogue: Our dog’s name is actually Mr. Clyde Bojangles according to me and no one else in the family. But it’s on the Internet now, so it’s true.

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I’m Sad.

14 02 2014

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I need to start by saying we’ve had a change in our family. Not an actual change, but a label change. Our son with SPD has become our son with NLD… If you haven’t heard of that, don’t feel bad; I hadn’t heard of it either until my son was diagnosed with it, and I’m in the field of special education. NLD is Nonverbal Learning Disorder (or Disability), and it’s very similar to Asperger’s Syndrome (AS). The way I’ve been trying to explain it to people is that NLD and AS are the same soups with different spices. Both soups have the ingredients of attention issues like ADHD and sensory issues like SPD, but where kids with AS typically have good visual skills, kids with NLD typically don’t. When we told Cameron about what his neuropsychologist said, which he was begging to know, we explained first what Asperger’s is, since he has a friend whose brother has AS. After that, he said, “Oh! I think I have Asperger’s! I have four out of the five things you just listed!” We explained NLD is similar, but not the same, although in my reading it seems to depend on who diagnoses the child as to which label he/she will receive. Other deficits that we’ve discovered with the help of our most amazing neuropsychologist is that Cameron’s information and visual processing are s-l-o-o-o-o-w… I mean slower than my free college dial-up Internet slow… Also, he lacks in motor planning, executive functioning, and working memory. I could go on and on here, but I think my story today needs to be less about what to call him and more about who he is, which honestly can be a struggle to accept sometimes.

But who is Cameron? When you first look at your newborn baby, you think of how much love you have for this person you just met (at least I did). When you hold him you may think about the teenage years when he may hate you and it’s going to be really hard, but you don’t think about all the struggles you may have beyond that, which is all I’ve been able to focus on lately.  It doesn’t really help that Cameron has started struggling with behavior at school, his handwriting has actually not improved at all since first grade (according to one of the many assessments), he argues with us about everything (Love & Logic is great, but doesn’t work for all kids all of the time), and he is, at times, painfully socially awkward. Watching him in a group of kids and seeing their reaction to him, knowing that he doesn’t pick up on their cues, is pretty much terrible. I was always the quirky “weird” kid, but I knew that other people thought I was weird so I tried to avoid those people. Cameron just goes in for more and more without ever realizing that A) They are annoyed; B) They are a bit weirded out; C) The arguments that may or may not ensue are partially, if not mostly, his fault.

So to answer my own rhetorical question, with a cliché answer, Cameron is Cameron. I don’t know anyone else like him. He is an avid reader (even though reading is typically difficult for kids with NLD) who loves History but gets so overwhelmed by too much on a math paper that he cries and is literally unable to do it. He is a very, very sensitive and affectionate person who loves tickles and snuggles and hates change to his routine. He is a smart kid with an extremely disorganized brain that reflects his desk and closet. He is a hoarder of things he cherishes, which is almost anything, and these things muddle up his room, which seems to muddle up his brain even more. He is a loving but extremely bossy brother and a sweet but extremely argumentative son. And because he’s a mix of so many juxtapositions, he’s hard to figure out and very hard to parent. There isn’t a baby book that tells a new mother that her new baby boy who talks so early and seems so smart may not be able to write so anyone can read it by 4th grade, even if he can give facts verbatim from a book he’s read. In What to Expect When You’re Expecting, there isn’t a chapter on how a seemingly typical child can still be atypical in his neurological development. I’m pretty sure I never read that you may expect to give your nine-year-old step-by-step directions on how to brush his teeth properly every single time he brushes his teeth.

And as Cameron’s mom, sometimes I struggle a lot. Sometimes I’m so overwhelmed with the fact that he will seem to be doing better, arguing less, listening more, having fewer meltdowns, needing less direction. Oh my gosh, maybe we’ve turned a corner! Maybe we’ve finally figured out what works! Then BAM! HaHa. Nice try. We’re back to square one. Which, clearly, is where we’re at right now. And you know what? I’m sad. I am constantly feeling guilty for feeling so frustrated about our family’s struggles, when I have so many families I work with who are parenting children with much more significant struggles. But today I’m giving myself permission to feel sad about it. Just for one day. It’s really, really hard to put so much time and effort into teaching strategies and going to therapists and changing diets and reading books, but still not feel I am doing any better at parenting and accepting Cameron exactly how he is than I was three years ago. So just for a few hours-just this once-I’m letting myself cry for the things I can’t change no matter how hard I try. I will cry for the strain these struggles put on my marriage, to the most loving and amazing husband in the world, who is equally as frustrated. I will cry at the ineptitude I feel on days when I hit a wall and let things crash down around me. I will not give up, but I will let myself feel. Just until I have to put on my big girl panties and get my amazing boy off his school bus, where he doesn’t really fit in, and I can bring him home, where he does. 





To IEP or Not to IEP– Question Answered!

5 04 2013

It’s been quite awhile since I’ve written. For one, it is difficult to write during the school year. But second of all, I’m not sure how much I should write about my Cameron, who is no longer a little “noodle” of a child who doesn’t care what I write about him. Well, actually he truly doesn’t care what I write, but as he gets older, I feel like it’s more important for me to censor what I share as not to embarrass him. So, while I may have a bunch of stories in my head that he’s fine with me sharing, I’m not sure that I should. With that said, I do, indeed, have stuff to say… Shocking, I know. This one is a long one, but I think it will be helpful for anyone struggling with the decision of how to get your SPD kiddo help at school.

Cameron and I were keeping a dialogue journal with each other. A dialogue journal is a notebook where you take turns writing to each other.  He had written to me and asked me to read it right that moment, which is odd for him; usually he wants me to read it without him in the room. Seeing that it was grown-up TV time in our house because he was supposed to be in bed, I begrudgingly read about how he was taking the WKCE practice test (the statewide assessment) at school and was asked by his teacher to double-check his work, seeing that he’d finished so quickly. It was clear from what he wrote that his teacher wanted him to check, but Cameron wanted to read instead, so Mr. G politely asked Cameron into the hall to talk with him about it as not to embarrass him. To Cameron, this was a huge deal. He ended his journal entry with a giant “I HATE SCHOOL I HATE SCHOOL” scrawled across one page with pencil marks so dark I’m surprised his pencil didn’t break. I looked up at him and immediately he began to cry. Hard. This was the moment that became clear to me that Cameron needed some help at school. The fact that he’d been this upset about a practice test that he’s more than capable of taking in combination with his frustration with homework and his handwriting made me realize it was time. At 10:00 that night I left a message for the school psychologist at his school to start the evaluation process to determine whether or not Cameron qualified for special education, a decision I’d been struggling with for months before then, and one that his past teachers had alluded to.

Every day I teach students with IEP’s (Individualized Education Program—a legal document that speaks to what children with special needs need to be successful in school), but still I wasn’t sure whether or not he would qualify. His teacher thought the evaluation was a good idea, but I didn’t want Cameron to resent me someday for putting a label on him. All I knew was Cameron hated school, and he needed some help to meet his potential while he was there.

So one day, I just decided to ask Cameron what he thought. I asked him if he knew what special education was. He didn’t, so I explained it and told him that I was thinking about seeing if he was someone who could be included with special education to get some help at school. I told him I was afraid he’d resent me if we went through with it. “Why would I do that?” he asked. Then he said, “I think I want to try that special education thing.” With relief I went forward to write the referral, talk to his school psychologist, the speech pathologist, the teacher, and more. I mentioned all of the quirky things that we see at home, including his disorganization, his sensory-seeking tendencies, his frustration with homework, his handwriting that is “light years” behind his peers, the way he starts a sentences, gets about four or five words into it, and stops to recollect his thoughts, leaving everyone who’s listening to wait (im)patiently for 10 seconds or more, how he struggles to properly/effectively brush his teeth and wash his hair and body, how he cries whenever things change from what he expects, how he obsesses about Abraham Lincoln and repeats what he’s read verbatim, I even mentioned how I think he may be on the border of having Asperger’s Syndrome. It was like I was blogging to his IEP team; maybe I should’ve just given them this website. 

When it came time for the team to determine for which “disability” he would qualify, I knew they were thinking “Other Health Impairment” (OHI), which is what many students with ADHD or SPD have as their label. What I didn’t know until I received an email while working was they were also considering him for “Educational Autism.” Now it was my turn to cry. I mean, I’ve cried a lot when it comes to Cameron—I’ve cried out of frustration, pride, fear for his future, etc., but this time I cried because I thought I’d said too much, and I’d put an “autism” label on my son. Me. I did this. I gave him autism. (This may be a good time to point out that the team would be looking at whether or not he qualified for special education under that label, and did not, by any means, say he had autism—I may have been overreacting a bit- another shocker). I share a petri-dish-sized classroom with a coworker who has become a very close friend, and who also has a son with SPD tendencies. “Cry it out,” she said. So I did. And when I was back together a few minutes later, I called the psychologist, who explained that from what we talked about it sounded like this could be a possible label. (So, as I’d expected, it was my fault.) However, the benefit of teaching special education is that I know that there is criteria set by the state for whether or not a child qualifies, I had already looked up the criteria for Educational Autism, and I knew without being biased that it was a far stretch to say that Cameron qualified. The other benefit of teaching special education is that the psychologist believed me and took that label off the table. So just as quickly as I gave Cameron potential autism, I took it away. 

A few months later, it was IEP time. We gathered in a room of many, including the school psychologist, his teacher, a social worker, a social worker intern, a speech pathologist, an occupational therapist, a teacher of students with Learning Disabilities, the principal, my husband, and me. It was overwhelming to be on the opposite side of the table, and I didn’t know prior to that how long initial IEP meetings were. By the time the students come to me in middle school, it’s clear that they have hearing loss; I’ve never taken part in an initial meeting.

The meeting was LOOONNG. To sum it up in a long paragraph, everyone said wonderful things about Cameron and raved about how delightful, sweet, smart, funny, and observant he is. Some of my favorite highlights included when the social worker observed him taking a book out of his desk to lick it before putting it back (yes, he licked a book), not long after using pencils like drumsticks and saying, “Watch me Rock-N-Roll!” to his group. Another highlight was when the LD teacher helped him organize his desk one day, only to find 21 books that he’d hoarded away like a squirrel saving nuts for winter. I had known he lked to read while he was supposed to be focusing on the teacher, but 21 books?! Long story sort of short, he didn’t qualify for special education. What made the meeting even longer, though, was the discussion about how many accommodations his teacher was doing for him every day in the classroom. His teacher is wonderful, and we’re so grateful and blessed that he understands Cameron so well. He allows Cameron to use a computer when writing papers or spelling tests, he prints out the assignments that Cameron is supposed to write down each day so we can read them, he even went back into Cameron’s WKCE booklet to make sure he’d filled in the tiny circles completely so he would be accurately scored. He’s fantastic. Unfortunately, not all teachers differentiate as he does. I was worried that if he didn’t have something in writing, all of the hard work that he does would be lost in years to come by teachers who don’t feel they need to help him because there is nothing in writing.  So, for students like Cameron who have a diagnosis of ADHD, as well as SPD, there is the 504 Plan- which is a list of accommodations that are needed for a student to have equal access to learning in environments equal to their peers. After discussing the need and qualification for the 504 Plan (about 30 minutes worth), my dear husband spoke up to ask if we were “pushing it” and maybe almost enabling Cameron by providing him with accommodations different from others in the class. I appreciated where he was coming from, but at 90 minutes into the meeting, I (and seemingly the others on the team) agreed that while the accommodations are being implemented this year without a 504 Plan in place, it’s good to have it in writing for years to come.  My husband later informed me that he was having a hard time “reading the room,” and that he wasn’t sure if people were just agreeing to accommodate Cameron’s crazy parents who are demanding more from the school and less from their child or if they actually agreed that Cameron needed help.  What sold me on the 504 most of all was when his principal said he was the same way as Cameron and wished he would have had a team putting this together for him. 

So, Cameron has been fitted with an appropriate 504 Plan, which will be revisited annually to make sure it works for him.  He is much happier at school now, as I think it opened everyone’s eyes to who he is and how he learns. I like to think of him as a squirrely, book-hoarding, child who needs a bit of help to show what incredible potential he has.  He is great, and with help that hopefully lessens over time, he will someday be a happy, productive, responsible adult, which I think (hope) is what all parents want for their children.








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