Thursday, December 13, 2012

These Damn Tics

So, I'll start with the good stuff first, and then we'll slowly roll downhill from there. Perrin's mood has been pretty stable for the last several weeks, and his behavior has been amazing. The only issues we have seem to be typical 8 year old boy defiance of authority - which, to be honest, I sort of find endearing at times. I certainly have no expectations that he will mindlessly obey, and my own parents encouraged us to question authority (within reason). He is fully able to express his displeasure with my bossiness, as well as easily vocalize his feelings even if he doesn't always know why he feels as he does sometimes. This is the curse of the mood disorder - we do not always know why we're feeling blue on any particular day, and sometimes it's simply the lack of sunshine.
Socially, he is doing pretty well.  A year ago, he just played alone most of the time, and if he did want company, he'd simply play his own games closer to a group of kids without really engaging them. And often he sort of freaked them out with his exuberant role playing. Now, he will actively seek out other kids when he feels like it and even asks if they want to play. I think Perrin's most admirable quality is that he does not care what other people think of him. If other kids look at him oddly because of his tics or because he's thrashing on the floor in the throes of a vicious Nighlok attack, he is blissfully unaware of it. I am very envious of this trait, as I still cringe inwardly when I see the way the other kids look at him.
Also, and this should tell you how significant it is, EXTREMO IS LONG GONE!!! Haven't seen that bastard in over a month. He sometimes pretends to be a Power Ranger villain, but it's lighthearted and fun, and it never carries over outside of regular playtime.
And now join me in the shit at the bottom of the hill. Perrin's tics are now pretty much constant. Face rubbing, eye rubbing, finger fidgeting, pretending to pick something off the floor, licking his lips, sticking out his tongue, facial grimacing, panting, repeating "chu chu chu," rubbing his feet on the floor, scraping the skin between his thumb and forefinger to the point of bleeding, and many more.
Try doing math with your fingers when they are required for ticcing. Or reading a book aloud when you have to lick your lips or swallow 3 times every few seconds. It's damn near impossible. Or using a computer mouse when your hands have to stay in tight fists all the time.
Academically, he's hit a wall because there seems to be no room in his brain for any additional input. There's been no substantial progression in his reading in almost a year. In the summer, when his tics were almost nonexistent, he hit a huge stride and was almost up to grade level in sight word recognition. His reading speed was improving, and he was understanding new math concepts. Suddenly, he has lost almost half of those previously mastered sight words, and his need to tic makes it increasingly challenging for him to even pay attention to any new lessons. Nothing can get in, and when it does, it doesn't stay in.
So, I'm left again with the medication conundrum. Treat the ADHD and watch him struggle through tics or try to teach him while he's pacing around the room and laughing hysterically? It's an impossible decision. At this point, I think I have to choose to try to decrease the tics, which means decreasing his ADHD meds while increasing the clonidine in the hope of some sort of balance. The Christmas break seems like a pretty good time to throw his brain into a blender, right?

Tuesday, November 27, 2012

Maybe we're a bliss of another kind

Life at the Wright house has been very content lately. On Halloween, Perrin agreed to organize and clean out his room and return to his bed, which helped all of us quite a bit to get back to a comfortable bedtime routine. Since then, there has been a gradual improvement in behavior and mood with Perrin.
We decided to take him off the trileptal, which had helped with decreasing his mania over the summer but seemed to have flipped his switch all the way to the extreme other end of the spectrum, and he was belligerent and miserable all the time. We slowly started to see a happy, funny kid re-emerge from his cocoon of grumpiness. He was enjoying playdates with his friends, and we weren't walking on eggshells all the time just waiting for him to blow up.
In early November, however, we started seeing huge increases in tics. He started licking his lips so excessively he was chapping the skin surrounding his mouth. A few times I even saw him hit himself in the head repeatedly, and he began telling me that they were upsetting him. Schoolwork became brutal; it would take him 20 minutes to get through a Bob book simply because he had to swallow or lick his lips for several minutes after just a handful of words. He got so frustrated just trying to finish a simple 8 page book that he'd start screaming or jump up and refuse to finish. It was heartbreaking knowing that he wanted so much to do a good job and just get through his work in a timely manner so he could move on to more fun things, and I felt horrible trying to push him to do something that was so challenging to him.
So we started him back on the clonidine right before our vacation to Texas for John's brother's wedding. I admit I had been excruciatingly nervous about the idea of taking Perrin to a wedding with his tics as severe as they had been and also not knowing how he would act overall. I anticipated a lot of issues and tried to prepare not only myself but the family members that would be witnessing any possible explosions. 
I can honestly say that I have never been more pleased to have worried over nothing. The trip was a huge success! Perrin's behavior was fantastic, and he even interacted appropriately with almost everyone. He really hit it off with his cousin, and the two of them danced their faces off at the reception. Thanks to my sister in law, Beth, we were able to head off a potential sensory overload and retreat to a quiet room for a little down time before hitting the dance floor again. I even got him to slow dance with me.
I think this trip was as successful as it was primarily due to a good combination of medication and the acceptance of our families. His risperidone dosage may make some people's eyes bulge out of their skulls, but when we tried to decrease it or take him off, he was nonfunctional. Manic to the point of not being able to carry on a conversation, depression so deep he would lie crying in the floor for an hour, and tics so severe that he was in pain. Believe me, I'd love to not have him be on this medication, and I'm hopeful that with time, we may be able to try again to take him off. The Daytrana patch, when the damn thing stays on, is amazing and wonderful and was the reason he was able to sit through the wedding ceremony. And I know it is helping because it fell off today, and I felt like I was trying to teach a child hopped up on meth. He was simultaneously so spaced out that he forgot how to spell his last name and so hyper that he had to jump on the trampoline every 10 minutes to just to go over flash cards.
I can't even say in words just how much I appreciated how kind and patient everyone was with us, and how everyone treated Perrin like anyone else in the family.  It may sound like that would be a given, but I have so many friends whose family members do not accept their children. I, myself, have a family member with whom I no longer speak because he treats Perrin as though he were defective and has chosen not to acknowledge him in any way. So to have everyone embrace him and all his quirks was so heartwarming and made it so much easier for me to relax and enjoy our time spent with everyone. No one stared, no one asked me what was wrong with him, and no one gave me that disgusted look that I see so frequently in my community.
 Overall, we've reached a level of bliss in this house that we haven't seen in awhile. I'm sure that everyone who witnessed Perrin's miraculously pleasant demeanor must think I've got a crazy dose of Munchausen by proxy or perhaps just overdramatic. And that's fine by me. Because I have these memories of smiles and laughter and fun that will carry me through the next several meltdowns.


Friday, October 5, 2012

Let's take a journey into OCD

There are two components of OCD that a lot of us deal with. The first is the most talked about, and that is compulsive behavior. Frequent hand washing, ritualistic behaviors such as having to step on cracks on the sidewalk, etc. Both Perrin and I struggle with these, and if you'll ask the family members that have had the misfortune to live with me during a heightened OCD era, they can attest to my compulsive cleanliness. When John and I moved into our first house, I would vacuum beautifully perfect lines into the carpet and make people walk around the edges of the room so that they would remain perfect. I know how crazy that sounds, but if I could see footprints in my rows, I would become very anxious and couldn't relax until the prints were vacuumed out. Not to mention the rage face that would occur if someone left a dirty dish in the sink.

Perrin, too, has these rituals, and he is the king of organized chaos. This is the current state of his bedroom.
Look closely. To the non OCDer, this may look like a tornado hit his room, but they are actually very organized rows of items that he has grouped together with purpose and intent. He knows the exact location of every single item in his floor, and if one thing gets moved, he becomes quite anxious. This slowly built up over the course of several weeks and started out as just the rows of toy bins at the head of the air mattress he's been sleeping on for the last month. That, too, is very precise. 4 pillows, 4 blankets, and his bed's mattress on top of him for added pressure. Sensory issues are a whole other ball of wax that I will cover another time.
If you're asking yourself why we enable this behavior, I'll be honest with you and say that we probably shouldn't. But as a person with OCD who feels a certain sense of security with my own organization, I empathize with his need to be surrounded with this. To us, it looks like a huge mess. To him, it means safety and certainty. Nothing in this world stays the same, and for a kid who has a very hard time dealing with unpredictability, the knowledge that his room, his haven, is exactly the way he wants it, provides a lot of comfort. It isn't dirty; I don't allow food or dirty clothes to remain. So, for the time being, it will remain. The only issue is that during playdates, he panics a little when his friends want to play with his toys because that means moving them from their spots. We are working on this with him, and I'm confident this phase will pass soon just like all the others.
The other part of OCD that a lot of people may not know about, or talk about, is the obsessive thinking. The thoughts that don't go away. That song that gets stuck in your head for days at a time. For some of us, this is heightened to a sometimes debilitating degree.
Some people have hobbies. They like things or don't like them. I'm told that neurotypical people can have casual interests or things they "sort of like." This boggles me because I am not ambivalent about anything. I either hate it or love it. I either have zero interest in something to the point where I'd prefer it not exist or I'm so completely obsessed with something that it will consume my thoughts for weeks at a time. If I hear a new band that I love, I will listen to them on a loop and then google the hell out of them to the point where I will know every member's name, parent's name,  place of birth, etc. I can tell you who every actor is married to, every movie they've ever been in. And I know you don't care, but I will tell you anway. My head is filled with mostly useless pop culture trivia because it's one of my obsessions. When John asks me, "Who's that guy who was in that movie with that girl," I usually know. I'm a master at "Seven Degrees of Kevin Bacon."
Perrin's obsessions are Marvel superheroes and Power Rangers. He has zero interest in anything else and will ignore any attempts at a conversation that doesn't include them. He has this amazing imagination and creates complex characters and breathes such life into them that they become part of him. He is now mentally stable enough to be able to separate his Extremo from Perrin and can switch on and off at any time, so it's no longer a concern. However, he gets a bee in his bonnet and frequently starts a topic, such as "We need to create a kingdom where everybody on the planet will live in our house," and then repeat this phrase over and over again for several hours. Yesterday he fixated so much on getting some sort of freeze blaster to build this kingdom that he paced in a circle around the house for about 2 hours talking about it nonstop. I may have lost my gourd just a wee bit around that second hour and went out and bought a damn toy gun in the hopes that he'd shut the deuce up about it. That was a temporary fix, and then I had to ask him to talk about something else for awhile because I was starting to go to my happy place a little too much.
The brain is such a persnickety little creature, and obsessions can be consuming. I can't tell you how many nights I lie awake trying to sift through the dozens of thoughts and images that run through my mind. I can spend hours replaying a conversation I had where I thought I may have offended someone or said something stupid. It makes me kind of an uptight, nervous person who has a hard time relaxing and just going with the flow. I am working very hard on being a more mellow person who doesn't care about socks left on the floor or worries about why a friend hasn't answered an email or text. Perhaps one day being around me and Perrin won't be quite so much like being in a Woody Allen movie.

Thursday, August 9, 2012

Some good news

Evil Extremo has been defeated! It's only been a few days, but I think it's safe to say that, for now, Perrin has decided to honor his commitment to transform the villain to the superhero. We have had a few hiccups where Extremo has emerged during times of extreme frustration, but those times have decreased more and more with each passing day. Yesterday, he reared his ugly head during tutoring for just a few minutes, and he immediately apologized and renewed his promise to work harder at being good. There was another moment when Perrin started to scrunch his face up in villain mode, and then excused himself to his room for five minutes to rage it out. He emerged fully refreshed and cheerful. I feel that Extremo has been Perrin's way of compartmentalizing his anger and keeping it contained within this character, so I don't yet want to discourage him from expressing those negative emotions in a way that he can deal with. It's a hard line to straddle - we want him to be able to work out his anger and frustration in appropriate ways while not feeling that he has to isolate himself to do so, but for now, I think it's best to contain it until he can express that without exploding or becoming physically aggressive.
He is also no longer retreating as far into the fantasy world as he had been. I'm seeing more and more moments of clarity where he can stay engaged in conversation or appropriate play with friends, resulting in some very successful playdates. The mania is subsiding, and he's able to quiet his mind and body long enough to be truly present in life.
I'm optimistic that this is the beginning of a good period for him. We have had great success with the medication that he's been on for the last 2 years, and I know that someday we'll no longer be able to use it, but I'm hopeful that with the addition of the trileptal, we will see longer periods of stability. But, honestly, for now, I'm just gonna live in this moment and cherish the calm for as long as it lasts.

Thursday, August 2, 2012


I haven't posted in awhile, because not much has changed. Perrin's mania lasted for over a month, with our days spent trying to keep him calm and safe. His neuropsychiatrist prescribed trileptal, which is used for bipolar disorder and tics, and he started taking it this week. He also increased his risperidone dosage, so hopefully things will calm down soon. The last couple of weeks have been challenging in dealing with rapid cycling with some severe mood swings. Perrin will be ridiculously happy one second, and then in the depths of despair the next, crying that we all hate him and that we shouldn't love him. His anxiety in social situations has increased substantially, and the mania only added to this. During one playdate, he just walked in a circle around the room singing, and when I tried to talk to him, he just kept saying, "Mom, I can't stop moving." He literally could not stop. He was frantic. I do think that his mania is coming down, which is why we're seeing more mood swings and anxiety. I'm hopeful that the new medication combo will help him become a little more stable. It would really be nice to have a coherent conversation with him again.

Our most concerning issue right now is with Perrin's alter ego, Extremo. Last year, Perrin developed an obsession with superheroes. Then he started creating superheroes and supervillains of his own, giving them unique powers and personalities. We were fascinated and applauded his creativity.  At first, it was just this funny little character that Perrin would pretend to be, and we would all battle it out in a very nonviolent, fun way. But as the mania increased this last month, Extremo emerged more frequently, and now Extremo is Perrin's primary persona. Very rarely do we see Perrin anymore. He introduces himself to people as Extremo. He growls, puts on this scary face, and becomes a villain. Ask him a question, and he responds as Extremo, going off on a long monologue about defeating "those pesky superheroes." I'm going to be brutally honest here. Extremo is a bit of an asshole. I do no like Extremo. He's rude, beligerent, defiant, and mean. Extremo laughs maniacally when told to do something. He does not care if he has hurt you. He doesn't care that he scares other children to the point where they don't want to play with him. If Extremo is satisfied, then Perrin shows himself and is a sweet, fun-loving child. Often it's like watching a person emerge from a split personality, and Perrin will apologize for Extremo's behavior and seem genuinely remorseful.  He's quite happy as Extremo, threatening to destroy the world and at times, even threatening to destroy me if I don't turn to the dark side. You see, he has turned me into Anti-Girl, and I am a superhero that must be destroyed.
Both Perrin's neuropsychiatrist and psychologist are as concerned about this as we are. At times I'm not even sure how tight Perrin's grasp on reality is, and there are days when he's so retreated into this fantasy world that it's almost impossible to talk to him about anything.
Bear in mind, we don't just allow Perrin to act like this without consequences. He has lost many a privilege due to his behavior when he's Extremo. He simply doesn't care about them. Do you think a true evil villain cares if he doesn't get to go to Chipotle or can't watch TV? Nope. He'll just spend that extra time plotting his next move to destroy the planet. He serves up his revenge quite cold.
The psychologist and I had a long talk today during his session, and we agree that it's time for Extremo to go. We're now in the process of trying to turn Extremo into a superhero before banishing him altogether. Perrin has agreed that if Extremo feels the need to do evil things, he will go to his room to do them and emerge as a hero. What upsets me the most about all of this is that Perrin has told us many times that he just doesn't like being Perrin, and no matter how much love and praise he gets, he still feels that he's not deserving of any of it. I do get it. I truly do. Super villains aren't insecure or sensitive. They just do whatever they want and to hell with everyone else. They don't have tics and have a hard time reading. But they're also lonely and reviled, and I can't allow Perrin to retreat so far into this that he can't come back out. I do not want to stomp out his creativity and his amazing imagination, but I also have to raise a child who can function in society at some point. Too bad we can't exist in the Marvel Universe.

Wednesday, June 27, 2012

Regression and mania

Two weeks ago we had our last neurofeedback session. During the last month of sessions, we were beginning to see a lot of progress with attention and even speech. I was feeling very optimistic that this meant we had his ADHD under enough control for him to go without medication.
Here we are, two weeks later, and Perrin seems to be regressing rapidly. He has lost over 20 sight words that he had mastered, he's reversing his numbers again, and he's been mildly manic for over a week. I'm trying so hard not to be devastated, trying to convince myself that this may just be a minor setback, but this has been one of those weeks where it seemed like trying to teach Perrin was a waste of time, since he doesn't seem to be retaining anything or sustaining focus long enough to even be instructed. He was doing math on the computer this morning, a program where it will flash a very simple addition problem (2 +2), and he would type in the wrong answer. The computer corrects him, and he has to type in the correct answer before moving on. Then he would just retype that same number for the next problem without even looking at it.
His tics have become so frequent that every task takes twice as long. Reading a book has now become a 20 minute process of reading a sentence and then ticcing for almost a full minute before moving on. He's forgetting  words he used to know and becoming more and more frustrated by my corrections. He licks his lips to the point where they're cracking, he's walking on his toes and tapping them periodically. He makes almost constant loud explosion noises, which is exceptionally challenging during school work. He's so hyper and manic that it's difficult to carry on a conversation with him. He is currently giggling and babbling directly into my ear and refuses to talk about anything but Power Rangers. If we try to change the subject, he simply ignores anything we say and returns the conversation back to this new obsession.
He paces around the couch for up to 15 minutes at a time nonstop singing songs that he makes up on the spot. While quite adorable,it is exhausting. We are now back to repeating directions several times with little success.
He's happy, almost deliriously so. He laughs a lot during our school lessons, but he's not paying much attention at all to what we're doing. I now have the difficult decision of whether or not to put him back on the stimulants that will worsen his already frequent tics, that make him crabby and argumentative. Yes, he'll probably learn better. Yes, he'll likely be able to sit in a chair for a few more minutes. But he'll be unhappy and difficult to deal with.
I am angry that I have to make this decision for him. I hate that I have to choose between chemically altering his brain so that he can learn or allowing him to be a happy child. It's unfair that he can't have both. I'm holding on to a scrap of hope that this is a short lived setback and that soon we'll again see improvement. I'd love to have a coherent conversation with my son again. I'd love to see that spark in his eye from feeling he's doing well in his school work. I suppose only time will tell. Perhaps this is just a manic week, and he'll come down soon.

Wednesday, June 20, 2012

Praise Science!

After 5 months of hauling the boy to sessions twice a week for a total of 40 sessions, we are done with neurofeedback. And let me tell you that it was worth every second of travel, worth the disruptions to his routine,  and worth the thousands of dollars spent.
Prior to training, Perrin was all over the place all of the time. Having a conversation with him was excruciatingly difficult most of the time because he had so many things going on at once and couldn't sustain his attention on you long enough to respond. Schoolwork was very challenging because we had to medicate the hell out of him to get him to sit still long enough to do even a few minutes of work, which caused his tics to increase so substantially that it doubled the amount of time any task would take. He'd read a sentence and tic for two minutes straight. Often those tics became self-harming, and he became very frustrated with them, telling me he hated them and wished he could stop ticcing by third grade. You could almost see him trying to suppress them, but he doesn't have the kind of control needed to do that yet. Plus, we are definitely not encouraging tic suppression, since that just causes them to come back twice as strong later on when he should be relaxing and just being a kid. If we tried to do a school day without the stimulants, it was damn near impossible to get him to do anything. He'd laugh uncontrollably and respond to every little bit of stimuli around him to the point of exhaustion for both of us. I would have to sit by him and redirect his focus constantly, and he was incapable of any independent work at all since he'd simply get up and walk away after a minute or so when something caught his eye or he had a project of his own choosing to complete. Having a conversation usually consisted of continuing his scripted dialogue from TV or movies. He didn't seem to be able to come up with spontaneous speech that had nothing to do with his obsessions with superheroes. His brain and body just never slowed down.
I didn't know what to expect going into this experiment. I knew it was a gamble, a huge one. But watching Perrin struggle with even simple tasks like getting dressed or putting on shoes was something I couldn't continue to watch without exhausting every possible avenue of treatment.
So, here we are. We didn't honestly start seeing improvements until around the 25-30th session, and our first glimpse that it was changing him was that he stopped scripting. His speech became more meaningful and understandable. He started pronouncing words correctly and was able to make the "th" sounds, which he had never done before. When we asked him a question, he answered appropriately almost every single time. The second thing we noticed was that giving him his usual 15 mg dosage of stimulants was now turning him into a zombie. Whereas before it just slowed him down enough to be able to sit in a chair for more than a few minutes, he would space out completely and become very tired about an hour after we gave him the meds. This was what Ann had told us would happen, and I was elated to be able to start decreasing that dosage. Little by little, I was seeing the same amount of focus from him on smaller dosages that we were seeing at the highest dosage. Eventually, I stopped giving it to him altogether, which was the ultimate goal.
Does he have consistent and sustainable focus? Not entirely. He has great days and less than great days. But what he can do is sit and read a book with very little redirection or correction without staring out the window or stopping to tell me about what the Power Rangers are doing every five seconds. He can follow a multiple step direction fairly consistently without constant reminders. He still occasionally walks to the top of the stairs only to shout down to me that he doesn't remember what he's doing up there, but hell, I do that too.
He still has frequent tics, and they are always strongest when he needs to direct his focus, but we knew that the neurofeedback would have little to no effect on the tics. Our aim was to improve his ADHD symptoms to the point of being able to take him off those meds, and we have done that. His mood has improved, and his confidence is growing. He feels pride in himself for the first time in his life and is a much more engaged member of our family.
I feel so grateful that he was born in a time when technology has advanced to a point where these kinds of treatments are possible. I'm grateful that there are people out there that devote their lives to helping our kids develop and thrive. I feel so optimistic for his future, and I can't wait to see what he can do.

Monday, April 2, 2012

Personality and Socialization

We have been VERY busy bees since my last post.  The boy and I have been settling into our homeschool routine, but I felt that we needed a little break to restructure and have a little fun. The freedom to take a vacation any time we need one is one of my favorite things about homeschooling. We were a little burned out, so we went to The Dells for a few days before John's job transition. I think we all needed to stop, drop, and roll out of our routines for a little while. Now John is safely tucked in at his new job, I have a new plan of attack for the rest of the "school year," and we are all refreshed and ready to go after a three week break.

What I've really been musing over is where personality fits in when dealing with the whole "socialization" aspect of not only homeschooling but raising a child with a disability in general. It seems the general consensus among the homeschooling and special needs community is frequent exposure to social situations so that they can experience what "normal" kids experience. In the beginning, I definitely felt that pressure to get Perrin involved in extracurriculars, co-ops, and social skills groups so that he wouldn't be lonely and so that he could work on developing conversational skills. But the thing is, Perrin is not outgoing. He isn't exactly shy, but when he sees kids playing on a playground, his first instinct isn't always to run to them and join in. When he was in public school, he kept to himself much of the time on the playground. And this was considered to be socially inappropriate to some, because he was supposed to be working on his social skills. In fact, he often had the school psychologist shadowing him. This forced socialization with no regard for personality is one of the things I struggled with growing up as well. As a kid, I wanted nothing to do with the other kids. I just wanted to read my book and be left alone during recess, but I wasn't allowed to bring my book because I was supposed to be playing like a good little robot. Navigating that minefield of bullies and cliques only worked to elevate my anxiety and make it that much more difficult to get through the day without falling apart. By high school, I was a depressed, insecure ball of nerves convinced that I was defective because I couldn't conform.

John is an introvert. In fact, John pretty much defines introvert. He likes people, and he is a very kind and friendly person. He has a wickedly delicious sense of humor and is very fun to be around, but most people don't see this because they make him uncomfortable. He doesn't go to music festivals even though he and I live and breathe music, and I can see him tense up fairly quickly when we go to a party. As an adult, he can choose the amount of exposure to these environments, and he is allowed to avoid them altogether. But when our children have these same issues, instead of recognizing their need for withdrawal, we are told to continually thrust them into more situations that they are not equipped to deal with and may never be. Socialization isn't always about practice makes perfect. That's the point at which personality must be considered before scheduling playdate after playdate or deciding to shuttle the kid off to karate, soccer, and whatever else will guarantee that he get the maximum amount of social exposure needed to mold him into a more typical person.

Perrin lives in a world of superheroes. The real world is extremely boring to him, and unless we all turn into Marvel characters, we are all boring to him. Social rules dictate that I shouldn't allow him this obsession because it separates him from other children. But he's comfortable in his own skin, he knows who he is, what he wants, what he loves. How is this a bad thing? He lets me know when he's in need of a playdate, he has good friends who understand him, and he is much loved by them. Yes, he gets strange looks on the playground because he's making explosion sounds and acting out his favorite scenes from Iron Man, but he never notices it. He simply doesn't care what anyone thinks of him, and this is an awesome quality that I refuse to crush by forcing him to sit through a social skills class that will work toward teaching him to memorize small talk so that he makes other kids more comfortable.
I'm done doing that.

We live in a world run by extroverts where eye-contact, handshaking, and small talk is expected. There are many of us awkward people who are often made to feel defective because we aren't good at these things. We aren't defective. We shouldn't be forced to endure our own discomfort so that the majority of folks can feel more comfortable with us. I know that my little twitchy family makes people uncomfortable, and I've stopped caring. Let them stare. Let them think Perrin is weird. When our society can stop placing more value on other people's perception of us than on our own feelings about ourselves, we wallflowers may finally find our place amongst the social butterflies.

Wednesday, February 22, 2012


It has been quite a year so far.

 Let me 'splain.
 No, there is too much. Let me sum up. Buttercup is marry' Humperdinck in a little less than half an hour. So all we have to do is get in, break up the wedding, steal the princess, make our escape... after I kill Count Rugen.

Er, um

Homeschooling is going well.  Perrin and I have settled into a nice little dance, and despite my attempts at being spontaneous and creative and more hippie-like in my curriculum, Perrin has decided that he'd much rather just get to it and be done with it so he can move on to play. The computer has become our best friend. Due to a huge increase in Perrin's tics, it's much easier for him to manipulate a mouse than a pencil, although I do insist on at least 20 minutes of handwriting practice and journal writing every day. I know that inevitably he'll do all of his work on the computer, but I do think it's important to be able to write at least somewhat legibly.
We have had a great time exploring science, and it's absolutely our favorite subject to share. We've taken field trips to the Field Museum to see the largest T-Rex skeleton, and The Museum of Science and Industry where Perrin got to stand inside a tornado. Our co-op had a lesson at the college's planetarium that Perrin loved. We've created a volcan as well as a life size human body complete with organs.
I discovered fairly early on that Perrin hadn't really learned phonics at school, and his learning style is definitely geared more for a whole language approach, but we are going back to basic decoding. It's difficult for him to sound out the words, and he still struggles with remembering the rules, but good gravy, the english language is insanely confusing. How anybody learns it is beyond me.

Our biggest challenge this last month has  been issues with medication withdrawal. When we began neurofeedback, the director recommended that we decrease Perrin's risperidone, as it may affect his brain's ability to train. Huge mistake! I mean, I'm going to go on the record saying this was a huge parenting fail on my part. We decreased very slowly down from 3 mg to .5 over a 2 month period, and what I learned at the end of this process is that he simply doesn't function very well without it. His tics are now the worst they've ever been - he grinds his teeth, his entire body convulses on an almost constant basis, he now has a coughing tic that is heightened when he eats, causing us to be paranoid about choking at every meal. The kid now hates his tics, and they exhaust him. He becomes easily frustrated by simple tasks, and his moods have become unpredictable. We saw mania like we hadn't seen in 2 years which could quickly turn to tears over the smallest thing. Now that we've put him back on the risperidone, he seems to be calming down, and he's a lot more stable and happy.
On top of all of that, we're 20 sessions into the neurofeedback and seeing little change in Perrin's focus and attention span. It's hard not to be discouraged, but I have to keep reminding myself that it does take time, and that the hope I had placed in this process was probably a little overly optimistic. His speech seems to have improved, his ability to retain new information seems better, and his reading has definitely improved. I have no idea if this is due to the neurofeedback, but we're excited about his progress.
Overall, life is as it always is. We treasure our good moments like people who will never have them again. We try to get over the hurdles as quickly and painlessly as possible, and we stick together through it all. Perrin knows he can talk to John and me about his tics, about how tired he is, about how frustrating it is to live in a body that never stops. He knows we get it. I think that brings him some comfort.

Friday, January 13, 2012

Homeschool Week One

Week one is officially done! I have learned so much this week through quite a bit of trial and error. I have learned that Perrin really loves using legos to do addition and subtraction, but he hates using shaving cream to write words because it's "disgusting." I have learned that he rocks at math and enjoys playing educational games on the computer. I have learned that he needs to follow a very rigid schedule, but it does not have to be the same each day, so I'm able to shift subjects around based on his energy level and attention span. I have learned that he goes nuts for low crawl and crab walk races in between subjects, and that he definitely needs downtime to do whatever the hell he wants around lunchtime. I have learned many things this week, but the most important thing I have learned is that Perrin and I are a fantastic team! We are both highly anxious people, and sending him to school every day filled us both with knots in our bellies. We are both so relaxed, learning in a quiet, safe environment without judgment, ridicule, or fear. Best of all, we're having fun. When it snowed for the first time yesterday, we cut the day a little short to play in the snow for over an hour after lunch. To make up for it, we had school today while the rest of the district is out.
I honestly had a concern that I'd miss my "free time," but that time was not spent being particular productive, and I felt a bit useless. Being Perrin's teacher has given me structure and a purpose. I love putting together lesson plans for each day. I love scouring the internet for curriculum ideas and using mine and Perrin's creative spirits to come up with fun projects that we both enjoy.
Our first science/art project was inspired by the very awesome Play at Home Mom facebook group.
We froze water balloons and added salt to learn why salt melts ice, and then we added food coloring and watched it sink into the cracks. The end product was beautiful, and Perrin loved watching it slowly melt over the course of the day.
Day Two we met up with a local homeschooling co-op and met some supremely awesome people. I signed Perrin up for a weekly early reader class with a small group of about 7 kids around his age. One girl was even more obsessed with superheroes than he is, and that's pretty spectacular! We stuck around after the craft for the gym class, where he had so much fun he begged me to let him come back next week. What I love about the co-op is that it's a wide age range of kids, so he gets to learn from the older kids and help out the younger kids. We're looking forward to the monthly science club as well, where he'll learn about a topic and then take a field trip. Perrin will definitely not be in a bubble. There's way too much to do out there!
This is our classroom. Due to Perrin's ADHD and sensory issues, bouncing on a ball to do desk work has been incredibly helpful. He's totally free to bounce and fidget, and no one tells him he has to sit still. If he needs to get up and run around, he's allowed to. If he needs to take a break to tic, he's allowed to. If he wants to wear his Spiderman jammies all day, he's encouraged to do so. He is totally free to be exactly who he needs to be, and we laugh our asses off at least a dozen times each day.

So, at the end of week one, I'd call this homeschooling experiment a glowing success. Perrin is a very good student, and I'm looking forward to seeing him blossom in a classroom where he's praised for trying his best and cherished for being quirky.

I want to thank everyone who has given me so much support and encouragement. Without my friends and family cheering me on, I don't think I would feel confident that I can do this. Now I look ahead to my son's future and feel certain that he will thrive. I'm sure my inner critic will pipe in every now and then to tell me I'm inadequate or I will occasionally let someone else's criticism shake my assurance, but in the end, I know that I must listen to that quiet voice that tells me to follow my heart and everything will be okay.

Tuesday, January 3, 2012

We may be "accidental homeschoolers," but

that doesn't mean I'm reluctant to jump in with both feet. I welcome this new adventure with all the excitement of a new career. You see, I always wanted to be a teacher, but my social phobias and inability to tow the party line always kept me from pursuing it. That, and the idea of trying to wrangle 30 small children for six hours a day would likely have driven me all kinds of insane. But teaching my own kid, this supremely awesome kid who dances like Mick Jagger in the middle of a room without a care in the world, this badass kid whose daily uniform is either a beaten up Iron Man costume or his Spider Man pajamas, this sweet kid who tries his very best and just wants to live in a world where he can be this extraordinary force for fun. Yeah, that kid I can teach.
Am I nervous? Of course I am. I feel a tremendous amount of pressure to somehow be better than or at least equal to his special ed teacher at school. I struggle to ignore the inner critic that tries to fill my head with all kinds of damaging words of self-doubt that I'll fail him miserably, that he may one day hate me for making this choice for him, that he may one day feel he's missing out on an experience that the majority of kids go through, that he'll grow so weary of staring at my face every day that he'll beg to go back to school.
Yeah, I have a challenging road ahead of me. But  I have to believe I am capable of encouraging Perrin to be a creative, independent thinker. I had a few kind teachers who motivated me to be exactly who I am and never expected me to comform. One teacher even used me as an example of a person who "marches to the beat of her own drum." I wanted nothing more than to be left alone and allowed the freedom to thrive in an environment that accepted me. Unfortunately, I was horribly bullied and eventually learned to be invisible instead of shine.  I wish nothing more from this experiment than for my son to always want to shine.