Sunday, February 14, 2016
But this post is not about that. Because this year progress has been huge! This year we have been lucky enough to experience only one tiny step backward after a handful of leaps forward. And we have celebrated the hell out of them because hope is too important to surrender. To not dive head first into the realm of the possible is far too vital to our survival to shy away from. Because this year I no longer consider myself a helicopter parent. The terrified mom that refused to leave her child's side for fear of what might happen to him or to the children he engages with has retired. The mom that worried herself right into medication has found the solace that she never believed could come. The child who I was told would be living in a group home as an adult is showing skills of self-sufficiency that many NT kids his age don't even have. The child who still struggles with reading is doing grade-level work, studying for and passing tests that all the other children are taking, making A's and B's, and has become the calming voice of empathy and diplomacy in his social skills group. He's become the kid that encourages everyone else to forgive and let go of petty frustrations. He's become this person who is so confident in who he is that he believes with absolute self-assurance that it's okay if someone doesn't like something about you because everyone can find one thing positive about another person. He's the kid who will seek out that one positive thing and even sees the sadness and anger in kids that may bully him as something they can overcome if shown kindness and patience.
This accomplishment has been years in the making. Years of hoping, years of therapy, years of trial and error with meds, and years of being held tightly during meltdowns caused by all of the things that he now shrugs off as trivial and not worthy of his time and energy. He is no longer a child that needs me to hover over him every time we are out in public. I no longer worry that he will hit someone or fall apart and need to be rescued. He's discovered who he is, who he wants to be, and knows how to get what he needs. He seeks out the sensory stimulation he requires in his classroom, either a body sock or heavy blanket, when he's feeling overwhelmed. He can play video games with his friends and not become enraged when he loses. He'll even lose on purpose if it means his friend can share in victory. To him, everything is a tie so no one has to be sad. He has become so stable that he was able to go to a middle school dance, and I was able to drop him off at the front door with all the other kids. Though I was anxious, he was well supervised and had a great time. This was a milestone I feared would never come, but now that it has, I now believe that my child is capable of anything. Because he believes in himself more than I ever did and will work as hard as he needs to in order to accomplish his goals. And I can relax and enjoy this amazing young man that he is becoming, a person who is becoming my friend, a person who is teaching me every day how to worry a little less and hope a lot more. I can land the chopper.
Saturday, May 16, 2015
Tuesday, January 13, 2015
This past year has been a whirlwind of excitement and change. Many people with Tourette's don't handle change and/or excitement well at all. We are no exception. While I myself love and embrace the more spontaneous nature of our lives, my guys like a little more structure and predictability to feel content and safe. This year was definitely an exercise in upsetting the balance of things and learning to come out on the other end intact and still kicking.
At the start of the year, we were still in the process of enrolling Perrin back into public school. We had decided that the psychologist who declared that our kiddo was intellectually disabled was a loon, but she did have a point that he needed more than I could provide him. Homeschooling was never meant to be a permanent situation for us, and he was ready to jump back in. It took several months of testing and consulting, but finally by spring, we had found our winner. A small, self-contained classroom with kids who were dealing with a lot of the same social anxiety and emotional intensity that he does - there's even another boy with TS in there with whom Perrin can share in his frustrations over his tics. You can see the excitement on his face as he began his adventure.
Not only has this transition been good for him, but it has tremendously improved our relationship. He never really adjusted to the idea of me being both Mom and Teacher, so now I can just be Mom. Next year is middle school, and that's a whole new ball of anxiety, but we'll jump off that bridge when we get to it.
Another adventure we had was going to The Bahamas. Perrin and I got our very first passports, and we spent a week in paradise. This was right after a major med change, so our first couple of days were a little rough with him not knowing what to expect, and the heat was fairly brutal. Once we settled into a fun routine, we all had a wonderful time. There was a major drama involving our dolphin excursion because a storm passed over, and we all had to wait 2 hours for it to dry out. Perrin's anxiety had hit its max at that point, and he fell apart. It was 2 hours of wailing with the dolphin trainers trying desperately to help us calm him and completely not understanding that he needed to be left alone. Eventually I did take one of them aside and explain about Perrin's neurological quirkiness, and he completely understood and went above and beyond to make it worth the wait. Perrin got extra snuggles with the dolphin, and from the pure joy on his face, I could tell that all the trauma was washed away by this magnificent animal.
The next big change in our lives was to our home. John and I let fatigue and impatience get the better of us, and we settled for something we didn't really love. Tiny bathrooms, tiny unfenced yard, and hideous yellow paint in the largest room in the house. It has taken us 8 years to get to a place where it's starting to feel like our home, and getting rid of that yellow was a huge step in the right direction. We replaced it with a soft gray that will eventually extend to our dining room and kitchen once we open that up as one large space. We also put in skylights, and now it is my favorite space in the whole house.
I saved the biggest change for last. Perrin has been on virtually ever medication under the sun for TS and a plethora of comorbids for half his life. He began taking stimulants for ADHD at age 5, and the next year we added antidepressants for OCD. Due to the negative reactions to those, he was then placed on risperidone, a pretty hardcore antipsychotic, for both his tics and a mood disorder. He was originally prescribed it for early onset bipolar disorder, but over the years we all realized that this was simply not an accurate diagnosis, as it was diagnosed by someone with little knowledge of TS. We attempted twice to wean him completely off of it, but it was never the right time. He was usually on another medication with it at the time, and we never found the right combo to really be effective for any of the comorbids. So this spring, I finally threw my hands up and said "I'm done." Over the course of 4 months, I took him from 4.5 mg to nothing. Perrin has been absolutely med-free for 7 months, and I finally feel like I'm getting to know who he really is. There's no longer that fog of confusion from him all the time, and he experiences a natural intensity of his emotions in a way that he is able to express and resolve. This is the most emotionally stable and healthy he has ever been. Of course he tics, but no more than before. Of course he still has sensory issues, mood swings, ADHD, and obsessive tendencies. Only now he can actually mine his brain for the right words to make himself understood. He no longer has rage attacks, and even when he does experience an episode of anxiety or anger, it is almost always quickly resolved with a few minutes alone to collect himself. The vast majority of his behavior can now be considered fairly typical tween nonsense and treated as such. Most of his freakouts can be quickly diffused with humor, and he and I have returned to our lighthearted sarcastic banter. I've introduced him to some of my favorite TV shows, and he is just becoming this truly interesting person. I'm certainly not closing my mind to the possibility that he may need to go back on meds in the future, but right now he is good. And that makes life a hell of a lot sweeter for all of us.
So here's to 2015. Here's to kitchen remodel, middle school, Yellowstone, and me potentially publishing a book.
Saturday, May 10, 2014
I haven’t written an update in so long, and it seems that the past several months have flown in a blur. This winter was extremely challenging for us for many reasons, including a painful snowpocalypse that left us indoors far longer than is healthy for any of us. With that came depression, rage, and many other unpleasant mood swings from every single one of us in the house. There were weeks where we just fed off of each other’s “stuff,” and all forms of coping mechanisms became somewhat crippling and divisive. In the midst of all of that, we decided to re-enroll the boy child in public school on a part time basis.
It started this summer when we had the neuropsych evaluation that, although we now realize inaccurately diagnosed him as intellectually disabled, did put the nibble into my brain that he likely wasn’t going to get all the necessary developmental help with just me alone. So we started more private therapy, including occupational, speech, and aqua. These have all strengthened him and have helped him develop more appropriate means of emotional and sensory regulation. He is progressing quite well, and in the past few months we have really seen an improvement with his mood to the point where we have cut his medication in half with the intention of eliminating it altogether.
After a disastrous attempt at going through a special education attorney who could not follow directions, we decided to start the evaluation process on our own with the school. The assistant student services coordinator for the district contacted me, and we set up numerous evaluations with the staff at his old school with the assumption that he would not be returning to a general ed classroom there after the nightmare that was 2nd grade. That process, although thorough, took 4 months starting in December, and by end of March, we had found the perfect classroom for him. He is now in a self-contained classroom with 5 other kids, and the staff there is supportive and incredible. The primary focus of the program is learning to reach for appropriate coping tools for dealing with frustration and other difficult emotions. The first hour of each day is designated for emotionally checking in with each other and talking through any lingering issues before beginning the day. There are sensory breaks scheduled into the day, and there is never any pressure to remain seated. Perrin is free to get up and move about as needed without judgment or admonishment. There’s even a fellow ticcer that he can commiserate with. He only attends until after lunch and recess, and we continue to homeschool and attend therapy in the afternoon. It is the best of both worlds, and we couldn’t be happier with this change.
Today, after 4 weeks in the program, I met with his entire team to follow up on his progress, and I heard nothing but wonderful things about my son. About how he shows empathy towards his classmates and is becoming more receptive to social correction when he says something unkind in the spur of the moment. He is developing a better understanding of why it’s important to think before he acts and how things said and done in the heat of frustration can be hurtful to others. He is developing friendships and practicing those social skills that just weren’t possible on a daily basis while homeschooling. Although there have been so many benefits to homeschooling full time, I have realized that Perrin truly desired that rigid schedule of walking into a classroom, hanging up his backpack, and starting the school day with other kids every single day. He was the most excited about getting to take a lunchbox to the cafeteria every day and eat with other kids. These were things I had no idea he cared about until now.
The past two years have really opened my eyes about my view of education, and my priorities have definitely shifted in what I consider to be crucial in harvesting a love of learning. Perrin may still struggle to read, but he devours information about history and science in his own ways. We have learned to adjust expectations and find creative ways to learn. I have loved that watching documentaries and visiting museums became our primary source or information about the world around us. I loved that I didn’t have to teach to a test or give grades, which would have been soul crushing to him. But, in the end, I also realized that spending 13 hours of every day with each other was damaging our relationship, and I needed some of the pressure off of me before it became too much to handle for both of us. I missed being “fun Mom” and dreaded the daily argument over schoolwork that left us both stressed and exhausted. I needed a team.
But now he and I get 3 hours of our own lives, independent of each other, and I love the freedom he now feels at being part of a classroom again. I love that his new teacher and I are partners in his education, where we both understand that some days it’s just going to be about helping Perrin get through the day, and if that means no academic work gets done but he comes home happy, that was a good day. I love that an important part of their day is playing games and having a dance party to cheer everyone up when the work is too hard. I love hearing Perrin brag to me that he used a coping tool when he got upset or that he earned a reward for helping a friend when he was feeling sad. It’s just enough time for him to feel like he’s no longer missing out on something but not so much that he’s strapped to a desk all day wrestling with his own body.
We have found that delicate balance where we are all happy with the situation, and we will ride this joy for as long as it lasts. As we do all the others. Together.
Saturday, August 31, 2013
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?
Tuesday, August 27, 2013
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.
Friday, May 31, 2013
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.