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.