Category Archives: Sensory
Why do I always feel icky after those meetings at school? I think it’s because I don’t like the person I have to become to fight for my twice exceptional kids.
Individually, I really like all who attend… teachers, principal, GT rep, Instructional Coach, etc. I believe that they believe they are trying hard to help Zoolander. But I also think that if I don’t continually push and push, and sometimes get ugly, Zoolander will not get what she needs to be a successful learner. That is what I have learned.
What I want to tell them is this… “I’m sorry I sometimes have to be unpleasant in these meetings, I like and respect you all, and I know you work hard, but I don’t trust you anymore and when I say ‘you’, I mean the ‘system’. I got burned before and my child suffered for it and I’m not going to let it happen again.”
When Lily started having difficulties in school in 2nd grade, I was assured that they were working on it. They did a full evaluation and started an IEP for her. As a twice exceptional student she qualified for an IEP because of her ADHD. I was completely clueless and just signed on the dotted line. I had no idea I could offer IEP input and even if I had, I wouldn’t have known what to do. I trusted that they knew what to do.
Lily’s difficulties just got worse, but I was assured that her case was being discussed at higher-levels. She was visiting an ADHD Coach, but seeing no results. By 4th grade, Lily’s teacher suggested I get her evaluated privately. She had a twice exceptional college-aged son who had similar challenges and she had done the same. That’s when I started to wise-up.
We then spent more than a year gathering info on Lily… with extensive (and expensive) outside testing, evaluations and therapy. When I was ready to go back to the table with the school to get Lily the help she needed, I was blown away by what hadn’t been done for Lily.
Not one person was looking at the big picture. The district had done testing, but no one had analyzed it looking for clues. Her IEP goals, written by the school, were way off-base. I was struck by the fact that up until now, Lily, herself, had been blamed for her behavior and no one with the proper expertise had bothered to figure out what was actually causing her behavior.
Eventually, it was our outside experts who pieced together the causes of her behavior, which I brought to the school and to the district. I was then frustrated to discover that no one really knew what to do to help. I demanded that the district provide the resources to come up with a plan, but in the end, again… it was our money and our outside experts who provided the answers.
So, even after all that, even after trying to educate myself as much as possible using wrightslaw.com, even after using the services of a knowledgeable advocate, I still feel like there is so much unspoken at those meetings. There are resources that aren’t mentioned, protocols that aren’t followed, procedures that aren’t discussed, tests that aren’t done and unless I know to ask, no one will tell me.
Makes sense, because if a parent is unaware, why would the district volunteer their limited resources? That’s their biggest advantage in a negotiation—they know and you don’t. Another common tactic that really gets me is the subtle vibe–’we’re calm professionals and you’re a crazy mother who is overreacting and imagining problems and expecting too much.’
So, in conclusion… that’s where I’m coming from at these meetings and that’s why I am forced to be… (nothing personal, of course)… a mistrustful jerkwad.
I passed Zoolander’s Sensory Eval on to her school and to our private Occupational Therapist. Zoolander began seeing our OT once a week and our OT began working directly with the school district’s OT to implement some of the suggestions from the report.
Zoolander loves her time with our OT. They usually start the session with some kind of swinging activity, followed by work on cursive handwriting. Our OT noticed that Zoolander had a difficult time, even with cursive, because her letter formation is far from automatic. Sometimes cursive is supposed to be better for visual-spatial kids because it’s more fluid and artistic.
The beauty of visiting this OT is that she’s wonderful and really gets my twice exceptional kids, plus she’s close to our house, but… insurance won’t pay for her services. Insurance insists that we can drive 20 miles to the nearest OT who specializes in grannies with arthritis and who have no training in working with kids who have difficulty with Sensory Processing. So, there you go.
Luckily, our OT understands the expense and gives us lots of ideas to try at home, plus she tapers off her sessions once she feels the child is improving. The books, The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder and The Out-of-Sync Child Has Fun have lots of great info and activities.
It’s also very helpful that our OT works quite often with the school district’s OT. That takes me out of the middle of things. They talk. The school’s OT observes and then makes adjustments and provides any sensory tools that they might need in the classroom.
Zoolander now has a special balancing chair, which she says helps her concentrate because she can move around more. She is also allowed to use a laptop for written work, which she says makes writing much easier.
I know the team at school takes care with Zoolander’s placement in the classroom, making sure distractions are minimized. They are also conscious of the fact that if Zoolander is fidgety, she may need a Sensory Break, which could just be running an errand to the office or erasing the white board.
Zoolander has shown improvement since these sensory accommodations were made, but I still felt that there was something else that was getting in the way of her learning. So, I put her on the waiting list for a Learning Evaluation.
Let’s take a little trip to Zoolandia and get an update on 2E Daughter #2. We’ve learned a lot about Zoolander’s learning issues since I last posted about her. Last fall, as she started 3rd grade, she had a Sensory Evaluation done at Children’s Hospital. Here’s the summary:
Zoolander has somatosensory challenges which presents as hyporesponsive exteroception. (So, that’s why she is never cold and doesn’t flinch at pain. We just thought she was brave.)
Zoolander also has challenges with proprioception, which is unconscious awareness of body position and movement: speed, force and direction of movement. (That’s why she likes to wear clothes that are too tight and small for her because it helps her body know it’s place in space.)
This is has caused delay in development of bilateral coordination, such as riding a bike, playing the piano and tying her shoes. (Yes, she learned to tie her shoes and ride a bike very late. And this is definitely a big part of her struggle with piano.)
This is currently impacting her functional performance and production of work—handwriting, piano and organization of her body to attend to the task at hand. Organization of these areas may help her filter extraneous sounds within her environment to attend to the task at hand. (This is why she sometimes has trouble paying attention at school and can be easily distracted, especially by sounds.)
AH HA! Many mysteries explained. What next?
Thanks to her IEP, Lily can wear a hat, chew gum and sit on a exercise ball, all of which help her focus. The fluorescent lights are filtered so that the flicker doesn’t give her a headache and make her irritable. She has a system in place, using index cards, so that she can ask her teacher for sensory breaks without drawing attention to herself. She can eat lunch outside if the cafeteria is too loud. She brings her lunch so she doesn’t have to wait in line where it’s noisy.
As far as organization goes, one of the 6th grade Special Ed teachers has been heading up the Lily containment effort. I’ve been keeping her in the loop on any issues Lily tells me about and then she helps Lily on that end. I let her know that Lily was scared of the power tools in Tech Ed (aka Shop) and that Lily was worried about being able to keep up in typing class. She reassured Lily about both things. I told her that Lily had some signed papers in her backpack that I thought might need to be turned in. She helped Lily take care of that. It’s been wonderful having that liaison at school.
Now, I know there are going to be ups and downs in all this. In fact, the downs will probably start as soon as they start really getting to work in the classroom. When Lily has to begin keeping track of assignments and start on them herself, I’m expecting some challenges. But that’s where her Behavior Support Plan or BSP comes in.