The gooey center

I realize that when I give updates on Tourette’s related stuff, it sounds pretty doom and gloom. Let me be very clear. It ain’t that dire. If Tourette’s is the hard outer shell, the rest of our lives is the ooey, gooey delicious center that is always worth the trouble.

We are a ridiculously happy family, and TS shit really only takes up a tiny portion of our lives. Yes, it’s always there in our face, and it adds challenges on a daily basis. Despite this, or maybe even in tiny part because of this, we are as close as 3 people can be. We are a team, and not one person in this family feels they ever have to face anything alone. 

We are fortunate enough to live in a place of incredible beauty and opportunity. Perrin is learning through life near one of the most fascinating cities in the country. He and I are privileged enough to go to the museums in Chicago frequently, and I get to see the excitement on his face every time he stands inside a vortex, watches the sun pop out in 3D, touches a stingray, gets to pretend to drive a real submarine, and jumps in the waves in Lake Michigan.

We got to take an adventurous vacation this summer where Perrin and I rode horses for the first time

Relax in the lake and let all the worries of the real world wash away as we spend time together as a family

Perrin has the best group of friends a kid could have who love and accept him. We belong to the coolest homeschool group ever. We have a community where we fit even when we don’t fit. The bubble doesn’t exist anymore.

I have these guys. The absolute raddest group of ragamuffins a girl could ask for. They make my life unimaginably fun, and they’ve never been embarrassed to be seen in public with any of us. Tics, tattoos, old lady glasses, full on meltdowns. Nothing is too much for them to handle. At least so far :)

We have a family that understands and supports us. Who will always be there if we need  anything. No matter what.

And above all, we have this

 

When many marriages struggle to stay strong with the added pressure of raising a child with special needs, John and I have never wavered in our disgusting love and devotion to each other. I have a true partner, who comes home from work early because he knows I’m falling apart, who encourages me to go out with my friends or fly to Austin for a sister weekend. Who still brings me flowers, chocolate, and the booze I like just because he thinks I’m awesome.

So, really, when you get right down to it, Tourette’s is the blip on our radar that is annoying but not catastrophic. There is no impending emergency. Our child is happy, healthy, and amazing. We are all in this together.  Is there really anything else that matters?

The new news that might not be news

Make sense? Well, that’s because it doesn’t. I’ll try to make this concise while still being informative as I possibly can.

A few weeks ago, I took Perrin (at the recommendation of his neuropsychiatrist) to a psychologist to get a thorough neuropsychological evaluation done. Our primary objective was to determine the reason for his lack of academic progress despite numerous interventions and a year and a half of one on one teaching. I’d take all the blame for being a subpar teacher if I thought that was truly the case, but he has had extensive tutoring over this time with very qualified special education teachers with very little progress. So we thought it couldn’t hurt to get more information and to also see if maybe this was due to a complex learning disability like dyslexia. Dyslexia seemed to fit in all my research, so I seriously thought this was what we were going to be told was the issue.

That is not what we were told. After 6 hours of IQ testing and other psychological testing, it was determined by this psychologist (mind you, one that has only met Perrin once) that Perrin has autism in addition to the Tourette’s and a moderate intellectual disability. This means that Perrin’s IQ is around 50. To give you some context, that is 25 points below Forrest Gump.  Hearing this news, as well as being told that it’s likely Perrin will need to live in a “group home” if he didn’t live with John and me for the rest of his life felt like being stabbed in the gut. Repeatedly. With a knife. That’s on fire. And that spins. With spikes. I was devastated. I told just a few people because I really was not up for the inevitable platitudes of “Oh, he’ll be fine.” or “He’ll catch up.” Because at that point last week, I did not believe that to be true. I was making plans in my head for how to best serve his needs while realizing that what we really needed to do was lower our expectations for him to be a fully functional, independent adult. Ever. I couldn’t deal yet. I’m not sure I can deal with it now. The psychologist told us that our best course of action was intense intervention – this meant social skills groups, occupational and speech therapy, behavioral therapy such as ABA, and much more stringent academic interventions than one stay-at-home mom can provide. I panicked.

And then I took a weekend to try  not to feel the weight of this crush my spirit. I want a happy, healthy future for Perrin just like any mother wants for her child. I want him to have all the same options available to him as every other child. In the back of my mind, I guess I always knew this might not have been realistic. But literally not one person who has ever worked with Perrin has ever told me that they thought he was intellectually disabled. Not one. When I questioned why Perrin wasn’t learning how to read, or why he still isn’t able to carry on a meaningful conversation that makes sense to anyone but him, all I was ever told was “he’s complicated.” Which is true. He has so much neurological bullshit swimming around in that perfect blonde head of his that it would make anybody crazy trying to organize a single rational thought. For Perrin, not only does he have constant tics, but he has OCD, SPD, anxiety, and ADHD so severe that it’s impossible for him to sustain his attention beyond a few minutes. The psychologist performing his testing even admitted she was never sure if he wasn’t answering her questions appropriately because he truly couldn’t understand them or if he was focusing on a person walking down the hallway, fiddling with his wristbands, or any one of the hundreds of thoughts that are constantly floating around in his head.

So that brings us to today. I took all this pessimistic information to Dr. Kohn, the neuropsychiatrist that has treated Perrin for almost 4 years, and he looked at me and basically said it was mostly bullshit. That there is no way a kid as complicated (yes, there’s that word again) could do well on a standard test like the one the psychologist gave him. Dr. Kohn believes Perrin is actually much brighter than his abilities show us, and that one day he may catch up once he learns how to filter all the unwanted stimuli out of his head. He agrees with the autism, but he believes Perrin is much higher functioning than he appears. So, in the end, Perrin presents as intellectually disabled because he is still not processing information correctly. When pushed to try to give me some kind of an idea as to why that is or when we could expect him to start doing that, I was met with “I don’t really know.” A lot of is ADHD, a lot of it is auditory processing disorder, and even more of it is simply that he’s at constant war with his body, which leaves little motivation to do anything but deal with all of that.

So, where do we go from here? Perrin still needs a lot of therapy to help him while his brain develops more maturity. He needs a lot more academic intervention than I am qualified to give. So we’re left with a few options. Put him back in public school full time and let them try and do the heavy lifting. This option makes me want to pull out my hair one strand at a time and then use those strands to tie all of my appendages tightly until they die and fall off. Another option is to hire an attorney and spend what could be years fighting the district for outplacement to a therapeutic day school for children with disabilities. This option just makes me tired. The option that I like, and the one I would love to fight for is for Perrin to go to public school – back in a self-contained classroom – for only half a day. This would give him 3 hours of academics, therapy, and that feeling that he fits in with “the norm” enough that he might stop begging me to send him back to school full time. This would leave me the afternoon to get him to private tutoring and therapy and still squeeze in social activities with our homeschool group. It’d be the perfect harmony between public and homeschooling, and if the district was willing, I know I could make this work.

In the end, I know that Perrin is still Perrin. I know that we are doing everything we can to help him be successful and happy. I know everything that everyone thinks they’re supposed to say. But the truth is, this does suck. As strong and optimistic as I’d like to be, there is still a little part of me that worries so much about Perrin’s future. And I think I have earned the right to worry. I’ve earned the right to mope just a little bit. And I have. But I also know that it’s time to put on my badass “take no shit” boots and get out there and fight for my son. Because that’s what I do. And that’s all I can do.

Testing and more testing

So we’ve reached that point with reading where such little progress is being made that we’re convinced there’s a deeper issue at  play here. So our current project is testing to rule out as many potential issues as possible.

Perrin is so bright and has such a great imagination that if he were able to put pen to paper, he could write the most amazing and exciting stories. He comes up with these elaborate movies with vivid characters and scenes. He even acts out dialogue. There’s such a rich complex world going on inside that brain of his, but there’s a wall. A wall we haven’t been able to breach.

I have used several different methods to try and teach him to read. We went through 6 months of Wilson Language Program designed for kids with learning disabilities, but I stopped forcing him to go due to a rather impatient tutor who was more interested in getting him through workbooks on her timetable than actually motivating him to want to improve. I am currently using All About Reading, a multisensory approach to phonics that includes magnetic letter tiles and flash cards to try and start at the very basics of reading. He still struggles with sounding out CVC words consistently, and he gets incredibly frustrated to the point of meltdowns if he has to read a book with more than 5 pages.

He shows many signs of visual and auditory processing issues as well as dyslexia. In fact, he shows so many signs of dyslexia that every single online test I’ve filled out indicates a very high likelihood that this is at least one contributing factor. 

I have been teaching him with a highly visual format due to his auditory issues, but since there’s a chance of visual problems, we’re starting our testing there. He has an appointment next week for a one hour thorough developmental eye exam that will test for pretty much every possible disorder. If it turns out, there is a visual component, we will begin vision therapy. If visual is ruled out, we move on to auditory testing which has therapies as well.

Finally, we are considering an evaluation with the Davis Dyslexia Correction Program in Chicago. It is an intense, 5 day program that is supposed to teach a person with dyslexia how to modify their own learning process so that they can decode more effectively. It uses a lot of hands-on aids including clay modeling of words to help them visualize what they’re reading. It has very good results, but it is a ridiculously expensive gamble. After the failure of neurofeedback, John and I are both very gun shy about trying another approach that will potentially cost us several thousand dollars and yield no results.

I know that all kids read at different stages, and I am in no way pushing Perrin beyond what he is capable. I read to him a lot, and we use audiobooks and documentaries in our schooling. He IS learning. But if there is an underlying issue that is making it more difficult than it needs to be and there are feasible solutions, I want to take advantage of as much as possible. Especially now when his tics are at such a mild level that testing can actually be done in a timely  manner without being too painful for him.

So that’s where we are right now. So begins the process of elimination and intervention. Wish us luck.

Disappointment and expectations

Part of living with Tourette’s is learning how to deal with disappointment when life throws us a damn curveball. This may seem like an easy task to neurotypical folks, but for us with a tendency to be inflexible and rigid in our mindsets and routines, this can be incredibly challenging.

When plans change at the last minute, when the place you’re going to is closed, when someone cancels a playdate – these are all situations where the brain needs to quickly switch gears and create alternative plans. However, it’s not like a switch one can simply flip on and off, and some of us with TS tend to just shut down for a period of time before being able to redirect.

I have this vivid memory of being around 14 or so and going to Abilene to the mall with my family and dying to see “Forrest Gump.” My entire day was planned around this event, and I had the specific time in mind. Everything that happened that day led up to seeing this movie and had to be done in a particular order and on my tight schedule. But as it usually happens in a family of five, something on my timetable didn’t go perfectly, and we weren’t able to make it to the scheduled showing. Everyone else in my family simply looked to see if other movies were showing at that time, but I lost it. I had what can only be described as a tantrum – at 14 years old.  My brain was incapable of flipping that switch, and a problem that should have been easily solved became a huge ordeal that my family had to deal with, and it resulted in me embarrassing myself in public.

Perrin, too, has had a difficult time in being able to alter expectations. Quite often, if things do not go according to his plan, he simply stops functioning on any rational level. He still has occasional meltdowns when even small changes in plan happen, and he can get very belligerent when reality does not meet his expectations. However, this seems to be improving.

We just got back from a mini vacation at Great Wolf Lodge, a place we go to about twice a year. We are all very familiar with the ins and outs of this indoor waterpark, and in the last few years have developed a routine that we are all very happy with. But, alas, a couple of curveballs were thrown, and we all had to adjust.

Curveball Number 1 – The Pizza Hut within the hotel has closed, and we didn’t foresee this.  Both Perrin and John had set their minds on that being supper on our first night. Perrin was rather excited about it, and when we found out it was no longer there, both of them shut down for a bit. Add exhaustion and hunger to that disappointment, and it very well could have been a powder keg of emotion. I fully expected Perrin to rage, but I was very pleasantly surprised when he calmly walked to the other restaurant to order pizza there. His only response was, “Too bad the Pizza Hut is closed.” I could have fainted from the shock.  He didn’t want to talk much during his meal, so I could tell he was still processing and reassessing, but he dealt with it his way.

Curveball Number 2 – Perrin is very into Harry Potter right now, and for the first time, he was interested in playing the MagiQuest game that is housed in the building connected to the hotel. We knew very little about the game other than you get a wand that you wave at various objects around the hotel, and they light up, talk, etc. There was a little miscommunication between us and Perrin about how it worked after the guy at the counter explained the game to us, and somehow Perrin got the idea that the wand would work with everything, even outside of the game. He thought he’d be able to bring the wand home, wave it at anything, and it would be magic. If you could have seen the look on his face when he brought the wand back to our room after completing a quest and discovered that he was wrong, it would break your heart. It devastated him. John and I felt horrible. Perrin just laid down in the floor and sobbed for about 20 minutes. He didn’t want to talk or be comforted. He just needed to feel it out. When he had processed the reality, he was ready to let it go, have some ice cream, and continue his quests. He ended up having a great time.

The entire vacation was fabulous, and we all had an amazing time. I remember the first time we went to Great Wolf Lodge, almost two years ago, and we had to hover over him the entire time for fear he would dart off and get lost or jump in the pool without one of us with him. We didn’t even feel comfortable with him going down a slide without one of us in front and one of us behind him in line.

He has matured so much just in this last year that we were able to relax on our trip and each have a little time to ourselves in the hot tub. We even convinced John to go down a slide that made him fear for his life.

Learning how to deal with situations that are beyond our control is one of the most difficult tasks a person with TS can deal with, but it looks like our kiddo is mastering it in his own way. I could not be more proud of him.

Ticville closed for the season

Spring and summer are my favorite holidays, and it’s not entirely due to getting a respite from the freezing your nipples off winters we have here. Spring means more sunshine, more outdoor play, and as an added bonus, fewer tics.

This winter, Perrin’s spitting tic was the worst it’s ever been and lasted far longer than the previous year. His face was frequently cracked and bleeding, and he started complaining about how much it hurt. My heart broke every time I had to put ointment around his mouth, and he would cringe with pain. When we went out in public, kids would stare or ask what was wrong with his face. He never acted like the attention bothered him, and I’m grateful for Perrin’s honey badger attitude, because I admit that it sometimes upset me to see the way people were looking at him as though he were disgusting.

But I am pleased to report that we haven’t seen the spitting tic in almost 2 weeks. I know that may seem early to say that it’s completely gone (at least for awhile), but it has eased a lot of tension around here to see it diminish. Once, I saw Perrin turn his head towards his shoulder as if to spit on it and then stop himself, so I am also hopeful that he’s learning how to redirect some. For people with Tourette’s, this is a handy skill to have and took me years to master.

The spitting tic has been replaced with oodles of incredibly endearing little tics, such as raising his eyebrows like Groucho Marx. Super flirty and adorable. He’s got oodles of various tics right now – blinking, shoulder shrugging, finger twitching – but they are all very manageable and only slightly impact him. It makes schoolwork pretty taxing, and most of his lessons take a lot longer than they would if he had no tics, but he gets them done with only minimal bitching on most days.

We joined a new homeschool group that is the cat’s pajamas. Not only do the kids accept and play with Perrin, but the moms are very cool as well. I don’t feel so much like a weirdo, and I’ve been enjoying getting to know more homeschooling families. I have gotten to a place of peaceful acceptance of my choice to homeschool, and even though it can sometimes be so challenging that I want to give up, I still feel that it was the best decision.

Everything is kind of awesome right now. I hate to use this word, but life feels almost “normal.” Perrin has matured so much over the past year that I feel totally comfortable allowing him to play in the yard by himself now without being terrified he’ll sprint down the street for no reason. I don’t have to hover over him when we’re out in public so that he doesn’t pummel some kid who gets in his personal space, and that is huge. I can land the damn helicopter! He is still quirky, and occasionally he will get a side-eye from some kid, but he doesn’t care. He can be belligerent and mouthy when he doesn’t like something like a lot of 9 year olds, but he no longer has massive meltdowns with hours of screaming and crying and destruction. He is acquiring the skills to function in this world that can sometimes be very overwhelming and seem incredibly unfair to a person who sees everything as black and white extremes. And as a person who still struggles with handling disappointment or even boredom well, I admire him so much more than he could possibly understand.

Bring it on down to Ticville

We have had a hell of a time lately with tics. There is not a moment in the day that Perrin doesn’t tic. This is not an exaggeration at all; he literally tics for 13 hours nonstop every day. He’s been doing the spitting on his shoulder and rubbing his face for the last couple of months with very little indication of it slowing down any time soon. His face is constantly red and raw, and it has become part of his morning and evening ritual to slather his face with ointment. He has to change his shirt several times a day, and I wash his coat every other day due to the smell. He now blinks all the time as well, so if reading was a challenge before with the swallowing tic, just imagine how difficult it is to follow along in a book with chronic blinking. He is still flicking his fingers as well, so holding a pencil or typing is also pretty much out of the question.

I waffle between being obsessively worried that he will never learn to read and just trying to go with the flow with the realization that there is really very little we can do at the moment. We have pretty much exhausted our medication options with regard to his ADHD, and on the days that I decide not to put his patch on in the hopes that the tics will decrease even a little bit, his focus and attitude are so challenging that no information is retained and the need for constant redirection and assistance frustrates us both. He is now taking a .1 mg tablet of clonidine in the evenings, half that in the morning, and another half at lunchtime. It makes him drowsy and somewhat persnickety, but it helps lessen the tics a little bit until about 2:00 pm. Then all bets are off, and it’s Tic Central.

That’s not to say that there’s no learning going on or that life is horrible right now. On the contrary, Perrin and I have been getting along quite well, and we’ve both fallen into a very content rhythm during our days together. If you take out the reading frustrations, everything is peachy in the school department. And I have found a method of positive reinforcement (cough * bribing * cough) that works well enough to keep him from arguing with me during our desk work. I insist upon 5 formal lessons per day, and for each task he completes with a good attitude, he gets a chocolate chip. It works. Don’t judge.

At this point, most of our school is what most would consider “unschooling.” He really loves documentaries, so we’ve been watching a lot of those. I try to incorporate as much of his interests into my teaching, so that I can hold his attention for a little while. If he’s digging dinosaurs for the next month, that’s what we’re going to talk about. This week we’ve been discussing The Big Bang and evolution. I read to him a lot, and we’ve delved into the Usborne Encyclopedia of World History, which I plan to teach chronologically. We go on a lot of field trips, and we’re just experiencing life right now. We’re out in the world, learning as we go. We joined a new homeschooling group that meets frequently, so we’re back in the community meeting new people and staying active.

Perrin and Young Earth.

 

What I’ve learned over the last year is that there is no “one size fits all” when it comes to education. Those arbitrary timelines and testing guidelines have been thrown out the window. It is not important to be able to write 17 legible words per minute to be a happy, functional human being. “Grade level” is not something I even really think about much anymore, especially considering what our district thinks 9 year olds must learn in order to perform adequately. I no longer give even the tiniest of rat’s asses what the powers that be think my child should know, because I have realized that it’s mostly bullshit and taught with the sole purpose of teaching kids how to take timed tests. Timed tests and Tourette’s do not mix, so I find them pointless.

Learning is part of life, and it doesn’t have to follow any particular guideline. On days when I am around moms whose kids are reading chapter books and doing algebra, I get a slight twinge of worry that Perrin isn’t there yet, but then I remind myself that there will be a day where everything will fall into place for him. One day his tics will subside, and his body can rest. One day he will pick up a book and be able to read it. One day he will be an adult living and working out there in the real world. And my only hope is that he come to this place knowing he was loved and accepted just as he is.

Priorities

When I was a kid, I was very good at school. I learned to read very early, was in the gifted program, and was an ideal student. I was also a completely miserable child even though I may have been perceived otherwise. I had very few friends, was horribly bullied, and felt like a freak for enjoying to read more than playing with other children. I had very low self-esteem, felt ugly and lonely, and learned that being invisible was easier than being who I really was.

So, as successful as I seemed to the outside world, I was a mess of insecurity and shyness. That is what I remember from my childhood. I remember feeling isolated and sad and never quite finding a place of my own.

My son is the exact opposite. He is a difficult student, argumentative and combative. He struggles greatly with reading and would probably happily choose to be kicked in the crotch than have to read. He needs a lot of redirection to stay on task and often forgets what he’s supposed to be doing due to his tics. However, he has more friends at 9 years old than I have ever had and is a mostly happy kid with confidence and self-esteem most kids would love to have. He knows he’s badass and has accepted his tics as a part of him. You love him or you don’t. He doesn’t really mind either way.

I’m slowly coming to the realization that happiness and a strong sense of self is something I have the power to nurture in him. When we are having a difficult day, or he is not grasping a concept that is a grade level below where he should be, I need to step back and look at the larger picture. What do I want his childhood memories to be made of? Being brilliant but lonely? Or having fun and being content?

He will be free of the torture of battling bullies on the playground. He will be free of the stress of beating the clock during timed tests. He will not be measured and found lacking compared to his peers. He can just be who he is. And learn to be happy in this world. In his world.

Why I haven't updated

I haven't written a post in awhile, and I'll try to explain why there's been such a lull. When the Newtown tragedy happened, there was a blog post that was circulated around the universe called, "I Am Adam Lanza's mother." In this post, a mother of a child with a mental illness talked about how she could relate to the mother of the child who grew up to kill a large number of children after killing his own mother. And let me tell you what struck me very hard in reading the comments and numerous counter-blog posts - the amount of people who railed against this mother for speaking about her child's struggles in a public forum. I was devastated to read that so many people thought she was exploiting her son or embellishing his troubles for attention. There were other mothers of special needs children who scolded her for painting her child in a negative light or for publicly humiliating him. And I brooded on this for a very long time. And then I read my previous blog posts as if I were Perrin reading about how difficult some of his behaviors are. I pictured him reading about his psychotic episodes that he very likely doesn't remember happening. And I weighed his possible reaction against my desire to not only chronicle our lives for our own record but to possibly help other families that may be living with a child with Tourette's. Or a family who has been fighting the losing end of a public school battle and may need some encouragement to pull that plug and homeschool. And I honestly don't know where to go from here? Perrin already resents me for pulling him out of school because he doesn't fully understand what went wrong there and sees me as the mean mom who took him away from his friends. He gets very angry with me if I try to guide him to a place where he is able to work through his tics so that he can do schoolwork. I am already the bad guy. I don't know if there is anyone that I have helped or if it's worth continuing to write about our family if it means potentially embarrassing or upsetting our son when he's able to read this on his own. My hope is that, at some point, he would want to be a contributor and be able to speak with his own voice what he goes through. But that time is not here yet. And I'm not sure I have the right to speak for him. John never told any of his friends in high school or college about his Tourette's, and he doesn't speak openly about it at work. Is it fair of me to publicly display Perrin's disorders for the world to see before he is mature enough to consent? I would honestly love to hear any opinions from those who have read this blog. In the meantime, I'll brood a little more.