We just got back home after our whole family went out to Camp Twitch and Shout’s “Family Camp” for the weekend. I wish I could say this was a “home run” for Connor, but as almost everyone who faces some kind of diversity or illness knows, there just aren’t any “silver bullets” out there. I could say that this short adventure was NOT Connor’s idea and that this put him in a very resistant mood, but I’m going to focus on the positive.
Even before I met the folks organizing and running Camp Twitch and Shout I knew their hearts and efforts were in the right place. Getting kids afflicted with TS to meet each other and have a safe place to be for a traditional summer camp is awesome. While the Family Camp has far fewer kids at it, this was Connor’s first ever time to be around other kids who have TS. I believe it was also good for him to see some adult figures who also have TS.
I bet many of the kids can appreciate their format of not making camp an extended counseling session. I’m sure TS comes up (how could it not), but I can tell from our brief encounter that this program is truly focused on making sure the kids can have a positive and successful experience at camp with the hopes of having successes and positive experiences later. Not to talk about Connor’s Friday night or Sunday morning (not so good…), but his full Saturday agenda which included swimming, kayaking, rock wall climbing, archery and movie night was a blast for him.
As for if we’ll send Connor to the 2013 summer-time Camp Twitch and Should, well… we’ll have to see. Despite having a good time on Saturday, he is still rather resistant to the whole idea. He can’t fathom why being around other people dealing with TS could be helpful. He can also be bull-headed when he wants to be (yes, that’s Connor more than TS!) and we are constantly straddling that line of letting Connor have much say in how he deals with TS and simply doing what we believe is best for him. On the latter, I believe Camp Twitch and Shout could be a positive experience for him.
If he does attend, I’ll be sure to blog about it (if I’m lucky, I’ll get him to blog about it) next summer. If anyone has has experiences from Camp Twitch and Shout themselves, I’d love hearing about them.
After Connor’s Tourette Syndrome Diagnosis and through most of the rest of elementary school we were blessed by teachers and students that accepted Connor’s diagnosis of TS. I sure don’t want to say that everyone put it aside and treated him as if he didn’t have TS. I simply wanted to say that almost everyone was respectful and understanding. Even most of the children simply adapted to this. This is a credit to these children and I also think a natural byproduct of children & schools being more accommodating over the years to all kinds of conditions that many students (and teachers) face and are present in the schools.
Because of this inherent ~accommodation~ Connor experienced, we never had the need to file a formal “Section 504 Eligibility and Accommodation Plan”. If you are unfamiliar with “504” rights and terminology then check out this Parent’s Guide to Section 504 in Public Schools for more information. Unfortunately, Connor’s tics started getting more intense & frequent during 5th grade. That coupled with our concerns around moving to middle school where he would be transitioning to a new class every period drove us to asking his elementary school teachers and administrators for their recommendations regarding the 504 process.
These professions suggested we pursue this process and late in Connor’s 5th grade year we worked with the school and our neurologist to identify our first 504 for Connor. It was a good start and had some basic TS-oriented accommodations such as “designated safe place to go in order to release tics” and “allowed to leave the room for drink, etc. when student feels overwhelmed, anxious or in need of movement”.
Having this ~official~ paperwork already created helped us as we reached out to his new 6th grade teachers. Several of his teachers were incredibly understanding and supportive, but we always had a couple that I believe thought Connor was just “acting out”. I still don’t get this mindset, but it does exist. I guess they don’t remember how hard middle school was and how unlikely any kid would do anything to stick out of the crowd.
Our real concern was around testing (and other “quiet”) times where we knew that Connor’s tics might be distracting to others. Somehow, we got through 6th grade with a simple “separate location for testing if needed” callout. Things went so well with testing throughout the year that at our annual 504 review meeting during the last week of school, we let the school administrator talk us into an even less binding “small group testing for standardized testing” rewording. How would we know that the very next day one of his teachers (who we believe was hitting a tipping point dealing with Connor’s TS) decided to place him in the hall for his final exam.
It took days to unwind Connor from this experience that gave the impression to the other kids that he did something wrong. He also felt like the teacher was mad at him. We decided that we’d need to enhance this testing accommodation once school started.
We did our typical email spread to his new 7th grade teachers with some upfront info on Connor & TS as well as sent them a copy of his 504. We were blown away when Connor was repetitively told to stop making noises by one of his new teachers during the first week of school during a pretest. It took us another few days to get Connor to calm down and fully explain this situation to us. Fortunately, we all agreed that the teacher was not trying to be mean and did not fully understand the situation.
What this did make crystal clear to me is that the 504 process is incredibly important and the legally-binding wording agreed upon is critical to help make sure student & teachers have a clear understanding of what is expected from each other. Fortunately, after a number of iterations we were able to update Connor’s ~testing~ accommodations to read as follows.
- For standardized testing, Connor will be tested in an individual setting.
- For classroom assessments/quiet individual work, an “individual testing location” will be agreed upon by each teacher, the parents, and Connor, close enough in proximity so the teacher and Connor have easy access to each other. Although it is not required for Connor to be testing in this environment exclusively, either the teach or Connor can decide when it is necessary.
- Connor and the teachers will agree upon a subtle signal either can use to indicate that he needs to move to the designated location.
After reviewing these with each of his teachers and settling on an appropriate place (if needed) for testing (i.e. NOT the hall) as well as the “subtle” indication signal, we believe we are going to have a smoother year of school. Again, these 504 accommodations are not just good for the students. They give clear guidance to teachers who are dealing with a number of children each day; some of which also have other 504 accommodations to comply with. I thank all of Connor’s teachers, and the administrators, for working with us to identify an appropriate plan for him.
For anyone else needing an accommodation plan, please learn from my mistakes. Take this stuff very seriously and constantly put yourself in your child’s and his/her teacher’s shoes. Do your best, but realize that these plans can be revisited at anytime so be diligent in continued evaluation of the effectiveness and/or consequences of the accommodations that are agreed to. If they don’t work anymore -- change ‘em!
This presentation gives some solid TS information, but also addresses some of the various “accommodation plans” and additional perspectives on how your child’s TS might best be addressed in these legal documents.
Soon after Our First Recollection of Tics, we started a conversation with Connor’s pediatrician that lasted about a year. To try to help Connor control his emerging tics, we tried some medication at that time, but as most folks know there is no “TS cure”. Several different drugs can be tried. For Connor, we tried a drug that actually was a blood pressure reduction medication. Connor would take this in the morning and during the school day it did greatly reduce his tics, but he also reported it made him feel very groggy.
On this medication, Connor would be exhausted by early evening and crashed hard every day. With letting Connor and his pediatrician decide what our next steps were, Connor felt strongly that he’d rather deal with the tics than to feel so, well…, drugged. This same type of medication may be the right fit for many others, it just isn’t what Connor wanted for himself at that time. As we got off the meds his tics started ratcheting up again in duration, intensity and frequency.
Upon a referral from his pediatrician we set up our first visit to a local neurologist practice who specialize in treating children; Child Neurology Associates. I would surely recommend this group of doctors, and Dr Howard Schub in particular, to any family in the Atlanta area that is looking for a recommendation.
My wife, a biology teacher by training, surely did her "homework" and had been researching tics and TS before our first meeting. She had shared all of her reference points with me and was making sure she, Connor and I were discussing the upcoming meeting. While we were talking in terms of TS, my brain was constantly telling me that Connor just had "a few tics" which I guess I was still thinking he'd grow out of as much of the reading I was doing suggested was possible.
After a thorough interview & check-up by Dr Schub, he looked us in the eye and explained his diagnosis of Tourette Syndrome for Connor based on his continued (greater than one year) expression of at least two motor tics and one vocal tic for this entire period. He talked a lot and I pulled it all in, but I simply didn’t prepare myself to hear an “official” diagnosis of TS. My wife had been preparing me for this, but I guess I just wasn’t ready to hear that this was something Connor would have to deal with from this point forward.
I was stunned all the way back to the cars (I had to go back to work after the appointment) and my wife could tell it. She already knew in her heart that Connor had TS and needed this confirmation that it was real and not just her layperson’s diagnosis. This just gave her that rally cry she needed to start being the absolutely best mom she could be for her son with TS (BTW, she is the absolutely best mom she could be for Connor!).
I on the other hand really didn’t prepare for this. I guess I was simply in denial prior to hearing the TS diagnosis. After they left I sat in my car for a while crying as the cold fact that Connor has to deal with this going forward overwhelmed me for a little bit. I pulled it together and like my wife, saw this as a rally cry to be the absolute best advocate I could be for Connor and to become an educator of TS for others.
I am grateful we did get Connor’s diagnosis when we did and simply did not just keep living in a wishful/naive mindset that these tics would just clear themselves up. I sure wish they would, but even now, years later, this is simply not the case. This diagnosis has let us accept this condition and focus on understanding how TS affects Connor and doing everything we can to make sure Connor has the best opportunity to do everything he wants to without having TS being a roadblock to him.
I’m also grateful that we were able to get this diagnosis early in grade school as it let him accept it as well while he was maturing through these years. I could only image how much harder this would have been for him to hear as a formal diagnosis many years later. Being years later now (he’s in middle school), Connor has had time to learn so much about TS which has helped him to understand what is happening to him and to be as educated as he can be about TS.
My intentions for this blog posting were to simply share this experience in case it might help someone else who has been through a similar situation to know they are not alone as well as to demystify the process should someone reading this is considering scheduling an appointment with a neurologist about their, or their child’s, tics. My recommendation is to go ahead and do it. While they can be scary initially, the only way to move forward is to get all the facts you can.