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!

Blog Hop Pic

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!

Advertisements




Happy, Healthy, Productive, and Able to Spread Jelly on Toast

15 07 2013

Image

from pinterest.com

Everyone has similar hopes for their children. I think most everyone would say they want their children to be “happy, healthy, productive adults.” We all want them to do something positive in the world and to be happy. Whether they go to Yale or to a local community college or just graduate from high school, I think most parents would agree that happiness (with a big side of being a good human) would be the most important piece of their children’s’ futures.

Honestly, that is what I want for Cameron too. I want him to be happy! But there are a slew of additional things that I would like for Cameron. These things come to me as I’m doing everyday things that I know are currently very hard for Cameron to do. While I was putting jelly on my toast today, I thought about how difficult that task is for Cameron. While driving past a city bus yesterday and watching carefully to make sure it didn’t pull out and there was no one around it, I realized that driving safely is going to be very difficult for Cameron; there is no way he’d think about the bus, he’d just barrel past without noticing it—well that would be if he was driving today, but we have about six or seven quickly moving years to get him to pay attention to the world around him before he gets behind the wheel.  Which brings me to what this summer has been about for our family—The Summer of Cameron.

Cameron will be nine years old in less than a month. We’ve been looking for ways to help him for at least two years, and not much has changed; he still has similar, if not exactly the same, struggles he’s had since birth. So this summer has been about therapy to help with self-esteem, swimming for sensory input, and more occupational therapy to help with those everyday things that are hard for him, in addition to just trying to let him be a kid and enjoy his summer. Not to be cliché, but time really does fly! Summer is more than half over (for me, anyway), he’ll be in middle school in only two years, and each year that he struggles with the stuff that we all take for granted, he gets further behind his peers, which will make it more difficult for him to make and keep friends, which will be detrimental to his self-esteem, which will all make it very difficult for him to lead that happy, healthy, productive life I talked about earlier.

So, while going to all these appointments that yield similar comments from professionals including, “What a neat kid!” “He’s so personable!” and the inevitable, “That [fill in behavior here] is not that typical of a child who also does [fill in another relatively contradictory behavior here],” I can’t help but feel a little bit defeated. And crazy. I feel crazy too. He’s so great with other people, and he is so very smart, and perhaps some of the behaviors we see at home are typical of other kids…but my gut (and my husband’s) says otherwise. His personality, and the fact that he’s adorable, and girls his age stare wide-eyed at him with dreamy eyes full of the crushes that I remember having on boys in my 3rd grade class, are his saving graces. And my saving grace as his mom is the fact that his “with-it-ness” is so compromised that he has literally no idea that the girls are looking at him like that.

While I do feel quite defeated lately, I am also very grateful. I’m so grateful for the fact that Cameron really likes all of these appointments that his crazy mother has lined up for him. I’m grateful that he is cute and kind and compassionate and personable. I’m grateful that he is an active and athletic kid, which in our culture may help him gain friendships in the future (take it from the tallest girl on the basketball team who was asked to work as the “manager” because I just wasn’t good enough to play- being good at sports seemed to make things easier for other people I knew). I’m grateful that Cameron is mine, because I think I learn something new from him every single day, whether it’s the name of a president I didn’t know existed (notably Millard Fillmore), or how to more consistently use deep breathing before letting myself say what is in my sarcastic brain.

One more thing I’m grateful for today? That Cameron and his sister are spending the day with their grandparents and this crazy mom gets a little breather. A day off makes it easier to do that deep breathing I was just talking about.





The Sleeping SPD Beast Awakens

27 04 2013

Image

I like this picture because he’s sleeping in a hat, he’s holding his book light, and just the fact that we took this picture with flash and he didn’t budge shows how hard he sleeps.

Just when things were looking up, we’re (almost) back to where we started. Sometimes it feels like just when Cameron is starting to “outgrow” his SPD symptoms (does that even happen or is it just wishful thinking???) he ends up right where we left off.

Let me start by saying that things in our house have been out-of-sorts lately. My husband, Jon, is in a part-time, yet intense, Masters program, Cameron is in swimming two or three nights weekly, Jon is working extra nights and weekends to make up for time missed for his Masters program, and I am going crazy trying to become an extreme couponer by taking advantage of double coupon days and clipping more than I ever have (no worries, though… I’m not hoarding cases of aluminum foil and toilet paper anywhere in my home), working full time more than 30 minutes from home, planning a trip abroad for my students, helping with an extracurricular club at school, exercising, flossing, reading to my children, trying to be a good friend, sleeping, cleaning, and the list goes on. I’m not complaining, I’m simply explaining what has been going on around here to cause the SPD behaviors to come back in full force.

One of the first resurfaced SPD behaviors is his speech. When Cameron talks to us, but naturally not to anyone else in the world, he struggles to get his thoughts all the way out. Seriously, Jon and I think we are crazy because no one else experiences Cameron’s laborious task of speaking like we do. It’s been something we’ve noticed for quite awhile, but it is getting worse. Every sentence he tries to say to us stops four or five words into it, takes a 5-10 second pause (it doesn’t sound like a lot, but try counting that out while you’re talking to someone), starts from the beginning, pauses again… Repeats process. I am so frustrated for him, and I asked him if everything is okay because he is having such a hard time talking, but he didn’t have any reasons for it (duh, Mom, my life is upside-down).

While he’s always bossy with his sister, Cameron has become so incessantly bossy that I literally cannot stand the sound of his voice because all that ever comes out of it is negativity. If he isn’t bossing her around, he’s complaining about anything and everything. And when his complaining doesn’t get him what he is so clearly entitled to (which it never has and never will, but still this seems to be a giant shock to him each and every time), he cries. And then he keeps crying.

While all of our house changes are clearly causing Cameron distress, they are doing the same to me. My coping skills and patience are nearly non-existent. Which leads to the straw the broke this camel’s back.

Accidents. The kind found in underwear. They’re back. To be completely honest, I do not check every pair of underwear that I throw in the laundry because I am scared that I’ll see what I don’t want to see. I know there are some accidents thrown in here or there, but they are minor enough to ignore. I have dealt with so, so, so many accidents, that I simply cannot deal anymore without getting emotional about them. Case in point, when I found a surprise while doing laundry recently, I was quite angry—not because of the accident, but because I found it when I went to pick up clothes to throw into the washer. Ick. Then later the same day, when a strong smell hit me in the bathroom where a certain bather’s clothes were, and I asked if there had been an accident, receiving the good old, “I don’t know… Did I?” as a response, I was even angrier. However, I did not share this with the bather, I simply explained that I also didn’t know if he’d had this potential accident, because the underwear in question were boxers, and I couldn’t tell if there was an accident or a self-care issue at hand. I calmly walked out of the bathroom, shut the door, and swore like a Marine raised in a trailer park of truck drivers.

Then I cried. This seems to be a theme in these blog posts. This time I cried because I feel like I did back on his very first day of life. See, breastfeeding was so excruciatingly painful for me that every time I held my beautiful baby boy, I was forced to recoil in pain literally almost as bad as the labor I’d gone through to bring him into this world. But every time other people held him, they were given the gift of being able to goggle at him with adoration and love that every baby should have, without thinking about what he was about to do to them. I started to resent this innocent being because he was torturing me. That’s when we switched up the feeding plan a little so I could love him without fearing him. The way I felt then is the way I’ve been feeling lately. Grandmas and grandpas are prevalent in our lives, and they get to see him for the incredible kid he really is; they get to have his snuggles, his humor, his passionate nature, and his love. I get to nag him. I feel like all I ever do is nag that kid, and I feel horrible.

This week, when Cameron brought home eight pages of math with corrections to be made and one page to be completed (he had been distracted in school, so his teacher sent home what he wasn’t doing there), my husband asked the question that I was thinking. “Do you think we should get him on meds?” Neither of us want this. We will try anything before we do this, but his behavior is starting to affect his schooling, his relationships, etc, and frankly, we don’t know if it’s all SPD or if there is ADHD mixed in with it, after all.

Well, instead of calling up the doctor to get a prescription, I ordered a new book I had recently read about, Cure Your Child With Food by Kelly Dorfman. I started reading it immediately, and opened to the chapter about SPD, only to find a checklist of behaviors typical of children with SPD, in addition to nutritional suggestions. It said that if your child has three or more of the behaviors on the list, he/she may have SPD. I read the list to Cameron, and we both laughed pretty hard at the fact that he had 11 out of 12 of the behaviors that I read to him. It is always reassuring to read about more kids like Cameron with puzzle pieces that don’t necessarily fit together so perfectly.

So, what are we going to do now? Well, the book says that kids like Cameron need supplements: Omega-3 Acids, Vitamin E, and Phosphatidylcholine. We do give Cameron Omega-3, but we ran out a while ago, and I just keep forgetting to buy more. This could be another reason why we’ve seen the spike in SPD behaviors. Other than that, we plan to start Occupational Therapy again, but we need to wait for summer to add anything more to our plates. I also made a flow chart of weeknight expectations so he won’t be surprised; it seems to be helping.

Tomorrow will be a trip to the store to buy the supplements that may help him. I’ll keep you posted on whether or not they work. Until then, I’m working really hard to fix my own attitude by reading up (more) on SPD with the book Raising a Sensory Smart Child by Lindsey Biel and Nancy Peske and by reminding myself of how to be a happier parent with one of my favorites, Raising Happiness by Christine Carter. How do I find time to read right now? The dishes don’t get done and the laundry doesn’t get folded. And I’m not sorry about it.

One more thing… It turns out that the bather mentioned earlier did, indeed, know he’d had an accident in his pants that time, and had lied about it. Lying seems to be the first response to any question asked these days. It also doesn’t seem to show up on any of the checklists for SPD. Hmmmmm. Suggestions on stopping this unwanted behavior are welcome!





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.





Wiggle Worm Triumphs Over Homework

27 09 2012

Cameron under the table, where his homework lies in wait while he works his core and cleans up the floor (something he’d never do if he wasn’t doing his homework).

I. Am. Exhausted. Physically, mentally, and emotionally, exhausted.  However, tonight I am also triumphant.  Let me explain.  As I write this I am watching Cameron “do his homework” while Amelia is babysat by the TV and dinner is waiting to be made.  I set Cameron up with a yoga ball to sit on while he does his homework, I brought home some “Reading Helpers” which look like a ruler with a colored, transparent line to use while reading to help with tracking, and I cleared the area of distractions. Now, let’s revisit that “do his homework” thing.  At this very moment, he’s actually under the table, lying with his stomach on the ball, using it to reach for a paper that fell on the floor.  The paper that fell on the floor fell because he was bouncing on the ball instead of sitting on it.  Now he’s switched to lying on his back on the ball while rocking and staring at the ceiling.  If you could hear through this post, you’d be listening to this odd high-pitched noise he randomly makes—kind of like when you stretch and make that noise that comes out of your throat because your mouth is closed. He makes those sounds while he eats, takes a bath, reads, writes… pretty much whenever he isn’t talking.  I just said to Cameron, “I don’t think that ball’s helping you.” He said, “Yeah it is.”  Now he’s kneeling on it, bouncing, and writing.  This should really help with his handwriting issues.  Or at least it will help with his core muscles.

Now he’s making an even higher-pitched noise and I’m trying not to let him see me laugh.  I laugh because if I didn’t find ways to laugh, I would cry.  A lot.  Now he’s panting, talking in that weird high-pitched voice, and adding some more weird sounds.  But he’s content.  I’m not sitting next to him to coax him to write every letter of every word.  He’s not arguing with me, or even Amelia.  It’s a precious moment of peace that I am so thankful for.  Now he’s banging his chin on his wrist while it sits on the table, making his teeth snap together like an alligator’s.  So, yeah, he may have some sensory issues.  Oh, and now I’m fortunate enough to be listening to his ever-so-popular mouth-fart noises.

But, guess what?  He just finished his homework!  No tears.  We had a couple of close calls when I made him fix his mistakes, but I had warned him that I’d correct his work, and it seemed to help.  Yes, there was a bunch of fidgeting on the ball, but I am willing to accept the fidgeting, noises, and chicken scratch for a finished assignment in less than an hour.

How did I do it, you ask?  Well, not only can this mom throw impromptu dance parties in the living room, help with intricate Lego building, read with funny voices, and make Halloween costumes out of nearly anything in the house; that’s right, for my next trick, I will predict the mood and melt-downs of the SPD monster inside of my child and avoid them with pre-planning.  Yes, I beat him to the punch today.  I had him start his homework right away after his snack, before his exhaustion set in.  I made it sound exciting that I had a new “tool” for him to use while doing today’s homework assignments.  He got the ball ready to use before he even started his homework. When he said he was almost done, I excitedly said, “Great! Then I’ll check it, you can fix your mistakes, and then you’ll be all done!” and he didn’t seem to notice that meant he had more time left than he’d thought.  I also got rid of his biggest distraction, Amelia, by placing her in front of the TV, which is in a different room.  And I didn’t even sit at the table, cook, or anything except sit in the chair within his line of vision and type this.

Why can’t I beat him to the punch every day?  Because I’m exhausted.  I work full-time with kids who have special needs, which puts into perspective how lucky I am to have a son with SPD instead of the plethora of other things that can happen to children.  However, by the time I get home, I’ve given so much to my students, and then I’m expected–no required (in a good way)– to give even more to my own children because my motto is “I will not put my students before my children.” But it’s really, really hard.  It’s hard to be “on” at work and at home. It’s hard to bring all of my strategies, tricks, and especially my patience home with me.  I’m not feeling sorry for myself, but I’m giving myself permission to be tired.  I’m tired just from watching Cameron do his homework, but I think I’m even more tired from the tactics I had to employ in order to make it go smoothly.

With that said, dinner can wait no longer.  Lucky for me, I am also giving myself permission to make frozen pizza.





Homework; A Mini-Post

20 09 2012

Do you know what really sucks?  Homework.  Copying words for spelling is such a HUGE struggle for Cameron, which ends in tears (because he’s exhausted and over-sensitive and throws fits over things that aren’t that big of a deal).  He’s not even supposed to have this much homework because the teacher gives class time, but Cameron is “falling behind”.  At least that’s what Cameron told me.  But why is he falling behind?  Is he goofing off?  Do we need to look into (gasp) medications?  What other things can we do before we get there?  Does he need an IEP?  What additional accommodations would help him?  Is it his handwriting?  Handwriting is a skill I most definitely have taken for granted until Cameron started struggling.  But O.M.G. does he struggle.  How am I going to make it through 10 more years of this?!  Can you tell I’m panicking and stacking all my problems into one giant pile that makes me overwhelmed and thinking that everything’s way worse than it actually is?  Thank you, lone Berry Weiss, for ending my night on a more relaxed note.  Ahhh… Mommy’s medicine.





Back to School with SPD

9 09 2012

The best part of a new school year is the fresh start.  No matter what happened the year before, you only have to deal for nine months at the most, then you’re on to a different classroom, teacher, and group of students.  It’s kind of awesome when you think about it.

Last school year didn’t start out so hot for Cameron.  About a month into it, I was on the phone with a therapist trying to figure out how to help our son, who had been turning into an emotional hurricane nearly every school night.  Each night was a mystery of what his Sensory Processing Disorder would serve up real nice-and-special for the family.  Sometimes we had “angry frustration over 10-minutes of homework,” with a side of “hit your sister.”  Other nights we were given “bossy controlling rule-maker” followed by “uncontrollable crying for an hour because your three-year-old sister looked at you.”  And when we were lucky, we had “snuggly lover” accompanied by “working really hard to find something to feel sad about.”

Once we figured out that Cameron had SPD, we weren’t exactly sure how to help him.  The few things I did ask his teacher to do were rarely done, and I felt like Cameron was spinning his wheels (as were his parents).  His therapist gave us a nice list of things for his teacher to do to help him, but we were never able to coordinate a meeting with his her to review them.  Before you knew it, it was the end of the school year and he was doing fine enough; so we decided to call it a wash and start fresh this year.

This is the first year we’ve started the school year knowing Cameron has SPD, which is a big advantage for him, his teacher, and us.  First of all, I asked around to figure out what teacher would be best for him.  Then, I did something I’d NEVER imagined I would do… I called his principal to request this specific teacher.  I decided to take initiative, since he has learning needs that can be helped or hindered by the right teacher.  This is kind of against my philosophy because I feel like an important skill for people to have is to deal with learning from/working with/being with people they don’t necessarily enjoy.  However, when I saw his love of school dwindle last year, I decided to take action and request someone who would work with him in a more proactive manner. We’ve now had nearly a year to figure out some tricks that work for Cameron, so when I went into his school on Meet the Teacher day, I had a mental list of things to tell his new (and requested) teacher.  It kind of went like this (written in the play version; feel free to grab a friend and act this out).  Also, if you click on the link, you’ll see the “xtranormal.com” version acted out in a mini-cartoon.

Cameron’s Back to School Act 1

Cameron’s Back to School, Act 1 (click link to view short cartoon movie of this Act)

[Cameron and his sister are playing loudly with beanbags in the corner, imagining that they are a draw-bridge, among other things while jumping and making crazy animal noises.  Katina and Mr. G are on the opposite corner of the room, talking quietly.]

Katina: I just want you to know that Cameron has been diagnosed with Sensory Processing Disorder.  He is a sensory seeker, which means he’s kind of grabby towards other kids and needs to be reminded to keep his hands to himself.  He has a hard time sitting still sometimes, too.

Mr. G: Oh, do you think he’d like to sit on a cushion? [gestures to blue, nubby, wedge-shaped cushion near where he’s standing]

Katina: Yes!  I also have tried to have him sit on a yoga ball at home while he did his homework, and he did say that he liked that.

Mr. G: There’s actually a classroom in our district that has those ball chairs for every student.  I think that teacher got a grant.  I can’t afford to get those chairs for my whole class, but if you want to send one in with Cameron, he could use it here.

Katina: Wow!  That’s great!  Maybe I will, if Cameron is okay with that.  Also, he has terrible handwriting.  He’s been tested for occupational therapy, and he doesn’t qualify, but it’s been an issue in school for quite awhile.

Mr. G: Can he type?

Katina: No, but if you’re willing to let him do that, I’ll start practicing with him at home.

Mr. G: Well, if that works better, that would be fine. It doesn’t matter to me.

Katina: I really don’t make him practice extra writing at home because I don’t want him to hate to write.  He has really great ideas, and he can get them down on paper, but it’s hard to read.

Mr. G: My goal is to make it so he doesn’t hate writing too, so we’ll do whatever works for him.

Katina: Great.  Another thing is that Cameron tends to lose control when he’s excited and needs to be reminded to calm down. We do brush him with a sensory brush, and it really calms him down.

Mr. G: If you want to send the brush to school, I would be fine brushing him here.

Katina: Well, I don’t know if Cameron would feel weird about that, but if he’s fine with it, I think that’s a great idea.  There’s one more thing.  I am a teacher, and so I was curious about his reading level.  He reads really well, but running records (where he reads aloud and a teacher records any errors he makes while reading)  are not easy for him.  He has a hard time getting his words out in general, which includes while he reads.  I gave him a reading test at the beginning of the summer and asked him to read silently, and then I asked him comprehension questions.  He was at a middle school level when I tested him.  I’m not saying that’s for sure where he’s at, but I feel like he comprehends best when he’s not reading aloud to someone.  When he reads aloud, he’s placed at about a fourth grade level.  I’m not trying to tell you what to do, but I’m just letting you know that happened.

Mr. G [smiling and nodding]: My son was the same way.  After I told his teacher about that, she tested him after he read silently and she said she’d never give him another running record again.

Katina: Thank you.

Mr. G: I’m not the best communicator, so if there’s something else, please just let me know.

Katina: I’m not a helicopter mom; I just wanted you to know about Cameron before you start.

SCENE

I left Cameron’s school thinking, “Oh. My. Gosh. This couldn’t be more perfect!”  I was excited and hopeful for Cameron.  Flash forward to the first day of school.  (You’ll need four people for this act, but one part isn’t a speaking role).

Cameron’s Back to School Act 2

Cameron’s Back to School, Act 2 (click to link to a short movie of this act.  There are only two characters in the movie because that’s all the website allows.)

[Jon, Katina, Cameron and Amelia are eating dinner around the table, discussing the kids’ first days at school.  Amelia is making a mess, has already spilled milk, is playing with her food more than eating it, and has pasta sauce on her face, in her eyebrow, and in her hair.]

Jon: How was your first day, Cameron?

Cameron: It was great!  I was so good I got two back scratches from Mr. G.

[Jon and Katina give curious looks to each other.]

Katina: …Really?  Does he do that to everyone?

Cameron: No, just me.  He said real quiet to me, ‘Your mom said I can scratch your back if you want me to.  Is it alright if I scratch your back?’

[Jon and Katina exchange glances]

Jon: Hmm.  Were you around other people?

Cameron: Yeah, I was at my desk.

Katina: Let me take this opportunity to remind you that if you ever feel uncomfortable with an adult-that they’re touching you inappropriately- you have to tell us.  Even if they tell you not to.

Cameron: I know.  I like Mr. G. because he touches me.

[Jon and Katina exchange concerned, surprised, yet somewhat amused glances)

Jon: What do you mean?

Cameron: Like he touches my arm and my head when he’s talking to me.

Katina: Yeah, you do like that.

Cameron: Can we send my brush to school?

Katina: I’m not sure I’m comfortable with him brushing you quite yet.

SCENE

I know in my heart that Mr. G is not a creepster.  I know that he was doing what he knows works for Cameron, because it turns out that Mr. G’s son is kind of similar to Cameron.  So I am so grateful that he’s being so kind to and understanding of Cameron.  However, due to the fact that I am a mother, I can’t help the weird vibes that this whole conversation gave me.  I was planning on addressing the brushing with Mr. G after the school year was rolling a bit more.

Well, it turns out that Cameron REALLY wanted to be brushed at school, because he “scheduled a private meeting” with Mr. G in the library, where he asked where and when Mr. G would be able to brush him during the school day.  Don’t get me wrong; I am proud of his self-advocacy skills, and I’m thrilled that he clearly feels a strong connection with his teacher.  But still… this is probably something that should be discussed with his parents before taking it to the teacher.  But this should come as no surprise to me.  Cameron is a “go get ‘em” kind of guy.  When he wants something, he figures out how to get it.  I should be happy he didn’t “schedule a private meeting” with the principal regarding this pressing issue of brushing.  Luckily, his teacher told him that he needed to talk to us before the brushing could occur.

So the good news is we have a teacher who is willing to go above and beyond to meet the needs of our son without an IEP (Individualized Education Program). The other good news is that I don’t think there’s a bad news (yet).  Cameron and his self-advocacy have worked towards getting what he needs, and that is a step in the right direction.  Now we need to work on his approach, both when telling stories about being “touched” and when asking his teacher for things prior to discussing it with his parents.  We’re getting there!








Parham Eftekhari

Tech. Food. Art. Life.

just a dad with disney questions

reading into things way too much...

systemsforsensorykids.wordpress.com/

Solutions for Parents and Families of Sensory Kids

My Out-of-Sync Child

Raising my ADHD, PDD-NOS, Out-of-Sync Daughter

Jill Kuzma's SLP Social & Emotional Skill Sharing Site

Ideas for Educators Supporting Social/Emotional Language Skills

pumpkinblossoms

A happy place for my heart

Sensory Smart Parent Blog

Insights, support, tips, and news for parents of kids with sensory issues

The True Power of Parenting

Emotional Intelligence for a Bright and Successful Future

Motherhood Is An Art

Motherhood takes a lot of creativity and humor!

The Immature Man's Guide:

How to survive in a mature world.

The Runaway Mama

For all the moms with a bag packed just in case.

...said the blind man...

Just another WordPress.com site

Outlaw Mama

My rules. My transgressions. My stories.

The Sensory Spectrum

For SPD Kiddos and Their Parents

Sensory Speak

Just another WordPress.com site

I Made A Human, Now What?

the perils and products of parenting

Voices of Sensory Processing Disorder

Giving a Voice to the Sensory Processing Disorder Community

The Jenny Evolution

Join the Jenny Evolution. Because We Never Stop Evolving As Parents or As People

mommysaidaswearword

writer turned mommy, mommy turned wife.

staydaddy

Being a parent everyday

Sensory Smart News Blog

Where Sensory Smart Parents Go For The Scoop

Musings, Observations & Anecdotes

Listen up. Or sh*t is gonna get real.

notjustaboy

A Mom vs. Alphabet Soup (SPD, NLD, ADHD...)