Category Archives: Gifted
Queen of Jeggings
Reading a post from CaffeinatedAutismMom on the SPDNetwork.com called ‘Meltdowns Happen’, brought back memories of just a few lovely Lily freak outs, most of them because she was unable to control her emotional response to sensory overload. Didn’t realize that until later, but looking back, it’s obvious.
Of course, as an infant, I remember her crying and crying at the slightest noise, or, as a toddler, crying when the trash truck honked its horn, running away from her Daisy Scouts meeting in Kindergarten because it was too chaotic and loud, holding her hands over her ears and shaking during school events in the gymnasium, hating the school bus because it was so loud, getting out of the pool and refusing to participate during swim team tryouts because, again, too loud and chaotic.
We figured out pretty early that Lily was sensitive to noise. But, it wasn’t until 2nd grade or so that we realized she liked soft clothing. In 4th grade, she refused to wear jeans anymore and I had to search out soft pants with an adjustable waist. She had one shirt she loved to wear and I figured out that it was Modal fiber, which IS very soft. In 5th grade, when I asked her why she always pulled a hoodie up over her head, Lily told me that it blocked the bright overhead lights at school, muffled loud sounds and made her feel good. Now that she’s in 6th grade, Lily has become the Queen of Jeggings. They’re perfect for her sensory needs. Soft, skinny, tight and of course, stylish.
Now that she’s 11, Lily’s meltdowns (in public anyway) are few and far between. Occupational Therapy has helped and so has daily movement. Lily’s learned coping skills. She’s learned to advocate for herself and she regulates her emotions better now. Sometimes she’ll remove herself from a situation when she realizes it’s making her uncomfortable. We’re still always on the lookout for triggers though and so are her teachers and the friends and family who know her. Sometimes just warning her that an event might be loud is enough. Now, if she does end up in a loud and chaotic situation, her discomfort usually shows up as irritability or agitation.
This topic of sensory sensitivities also made me think of an interview I did with Jeffrey Freed. He’s an educational therapist and the co-author of the book, ‘Right-Brained Children in a Left-Brained World.’ He’s also what you would call Twice Exceptional. He talks about his sensory issues as an adult and a child.
Peanut Butter in the Bathtub
Living with a twice exceptional kid who has ADHD & Executive Functioning difficulties means that many times the final step of any process is never completed. Toilet is never flushed. Bath never drained. Milk sitting out. Medicine bottles without lids. This gets more exaggerated when Lily has a friend over.
Lily doesn’t have a lot of close friends. Her best friend moved away when she was 2nd grade and she still hasn’t gotten over it. Her old BFF was the perfect partner for Lily—calm, organized and wise. Lily hasn’t found anyone to take her place. But there’s a girl who lives nearby who often asks Lily to play.
She is similar to Lily in some ways… she can be unfocused, but is very creative. I like that they play in an age-appropriate, creative, imaginative way. It’s never about boys, clothes, makeup or cell phones. They climb trees, ice skate, build forts and invent craft projects.
This girl spent the night recently and the two of them made a path through the house, strewn with their creative projects, which I only discovered later. I was out of the picture because I tweaked my back earlier in the day and was stuck laying down, waiting out the muscle spasms. Little did I know what was going on upstairs. I should have guessed.
The next morning, I was bummed to see that it looked like a tornado had gone through the house. The dining room table was covered with their art project that involved a hot glue gun, toothpicks and paint. They had made pancakes and there was pool of syrup in the microwave, a plate of half-eaten pancakes on the floor, and a glass of syrup stuck to the stovetop. There were costumes all over the living room floor and in the office, tape, scissors and glue sticks were spilled out of a drawer. The final straw came when I went to take a bath, which I thought would be easier on my back, and found a ring of something disgusting in the tub. Turns out it was peanut butter. Of course.
The girls apparently had a ‘spa’ in the bathroom. Their crusty bowl of peanut butter and chocolate was still on the bathroom counter.
On one hand, I admire their creativity, but on the other, I was furious The house was spotless 2 days ago, because I splurged and had a cleaning person come in. Now, it was trashed again.
Not that she doesn’t make messes constantly anyway, but when Lily has a friend over, she becomes so focused on playing that she thinks of nothing else. She doesn’t stop to think things through. Lily was so pre-occupied with having fun with her friend that it didn’t occur to her that giving each other peanut butter-chocolate facials was probably not such a good idea. Cleaning up her messes doesn’t even cross her mind.
I brought this up with Dr. K in our session with him this week. As soon as I started, Lily began to get angry and defensive. Dr. K stopped her and asked her to listen to what I had to say without getting emotional. They’ve been working on this a lot lately and Lily is getting much better at controlling her emotional response to criticism.
Dr. K tells her to put a ‘mellow bubble’ around herself when she listens. He also tells her she has to learn that it’s okay for people to get upset with her when she makes mistakes. If she doesn’t use the tools she has and makes a mistake that affects other people, they will get upset with her and she needs to apologize and try to do better next time. All good lessons for ADHD folks, who sometimes go through life with people upset with them for being late, forgetting things and making messes.
As far as the slumber party mess-making, Dr. K reminded Lily about one of his mantras for ADHD kids.. DO IT NOW. I think Lily usually intends to clean up her messes ‘later’ but then she forgets.
His other advice for ADHD kids—SAME WAY EVERY TIME, an attempt to create routine and reduce forgetfulness.
It was a great discussion and Lily is making huge strides in controlling her emotions, but I don’t think there’s an end to the mess-making anytime soon.
Outdoor Lab
Lily left for Outdoor Lab today. It’s a 5-day overnight trip to a beautiful piece of mountain property owned by the school district. All sixth-graders attend. They apply what they’ve been learning all year in the outdoor setting. This restored ranch has served as an hands-on outdoor school since 1961.
Lily was excited to go and husband said she didn’t seem nervous at all when he dropped her off this morning. I think it’s because we prepared her for it. Plus, every summer she goes to overnight camp for 2 weeks so, she shouldn’t have a problem being away from home.
We started preparing her last fall, when we attended an Open House at the Outdoor Lab school on a crisp Saturday afternoon. The aspens were turning gold and the view of the snow-capped mountains was stunning, but it didn’t take long to realize that we hadn’t prepared Lily well enough for the visit.
Off the bat, the organization of the event was a little sketchy. Apparently the idea was to wander around the area, stopping at different stations to get more info. But that’s exactly the opposite of the way Lily wants to learn about something new. She wants to know the big picture first and fill in the details later. This is often a trait of Visual-Spatial learners… whole-part learning. She said, “I just don’t get it. What are we doing here? What is Outdoor Lab?” She began to get agitated and peppered us with questions… “Where do I sleep, where are the bathrooms, where will I change, where do we eat, what are we going to be doing all day, what teachers will be here?… ” I told her we could ask at each station but that wasn’t enough for her.
Finally, we came upon a presentation given by the Outdoor Lab principal. I thought he might give a good overview. But the school nurse spoke first and she talked on and on about medical forms etc, etc. I couldn’t even listen because now we were trapped in this presentation and I could only think about the fact that we still had to visit the bunkhouses to show Lily where she’d be staying, and we were running out of time. I forced my family to get up and leave while the nurse was talking. The principal noticed and commented, “Well, I guess some of us already know what they need to know.” My husband was upset with my rude departure. But I felt like, with a twice exceptional kid like Lily, that sometimes you have to do what you have to do. Having her visit the bunkhouse before we left was more important to me than the nurse’s feelings.
Afterward, I emailed the principal and explained why we left early. He was very understanding and invited us to bring Lily up again for a private tour.
About a month before Outdoor Lab, husband took Lily up for a tour and they explained everything to her. In school, her teachers were also preparing all the students, explaining what they would be studying and giving them a daily schedule.
So, by the time she left this morning, Lily seemed confident and comfortable. I think she’ll have a great time. She just does so much better when she’s fully prepared for new experiences.
Unfortunately, Zoolander probably won’t have the same opportunity as her sister. There’s talk of suspending the Outdoor Lab program because of recent school budget cuts.
Icky Inside
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.
Brainhugger 