Category Archives: Sensory
Start your engines!
The race to the end of the school year has begun and Lily is off to a good start. We all survived the first day of middle school. Lily even described it as ‘awesome’. Hmm… that’s never happened before. Of course, they haven’t started doing any work yet, but she still was able to manage the stress and anxiety of a chaotic, new situation.
She was okay in the morning, in good spirits, until it was time to get out of the car. She got very flustered… which side should I get out on? how do I cross the street? which way to I go after I cross the street? should I get out now? I tried to explain calmly and she was able to pull it together and get out of the car. Her sister and I watched her walk away and Zoolander said, “That stressed me out.” Agreed.
I thought about her all day. What’s she doing now? Is she doing alright? Is she freaking out and the school is going to call me any minute?
Lily called when she got home on the bus. She was bubbly and happy and said it went great. She told me that she started to get freaked out once when she got to her locker in the morning and wasn’t sure what she was supposed to take to class. So, she said she just thought about it and decided to wait for the girl who has the locker next to her and figure it out. Great self-talk and problem solving to control her emotions. When we met with Lily’s psychologist the next day he was proud of her and we all had a long discussion about self-talk and the different types of self-talk, which led into our next topic… math.
Lily got upset when we talked about math, but instead of getting frustrated and shutting down like she usually does when she has to face a difficult topic, she really hung in there and talked about her worries. She’s very anxious about the math knowledge she is missing and has convinced herself that she will not be successful, which, after what she’s been through at school, is understandable.
I tried to explain to her that we chose the math program she’s in for several reasons, one of which is that her teachers feel that it’s better for a learner like herself. I told her that she has such a unique mind that none of us really know what is exactly right for her but that we’re all trying to figure it out. DR talked to her about staying positive and keeping an open mind and trusting that we’re all trying to help her. I told Lily that I would ask the school for some answers to her questions and that seemed to help.
On a more fun note, I took Lily and sis to the racetrack near our house today for the Super Chevy Car Show.
I promised I would take her because she loves cars.
We got to the car show at the end of the day and it looked like it was almost over. She was immediately worried that we had missed it. The ticket windows were closed so I told her that we would just walk in. She said she felt uncomfortable about that. Lily is very black and white about rules. I had to force her to go in and she was mad. I ignored it. After looking at a few cars, she got over it and had a great time.
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| NOT a Corvette |
In Kindergarten, Lily told us she wanted to be a car designer and still loves cars. Currently, she loves Corvettes. It’s their round tail lights that she says she loves. She asked if she could get a Corvette when she turns 16. I told her that they aren’t very good in the snow. When she was in the midwest this summer, visiting Grandma and Grandpa for 2 weeks, they surprised Lily with a visit to the home of a member of the local Corvette club. Lily got to take a ride in the women’s Corvette convertible and Lily said it was the best day of her life!
Help! My brain is falling out.
Tomorrow is the day… the day my life gets a million times more difficult for the next 9 months or so. Hey, I can exaggerate if I want to–I’m crazy. And you know what? I haven’t even told you about some of the twice exceptional issues Daughter #2 has, or the issues that I still need to get figured out for her, the evaluations I need to schedule. And I haven’t mentioned yet that she will have a teacher this year who gives lots of homework, so that’ll just be extra fun. All that gives us something to look forward to, now doesn’t it?
We had to go up to the store tonight and get school supplies for Daughter #2, (you know… Zoolander, as she wants to be called) because I am perhaps the lamest mother of them all. There were no other last-minute school supply shoppers–just me, Lame Mom.
Maybe that’s because I was too busy driving to work today and having my radiator bite it. Luckily, I noticed the water coming out from under the hood while I was driving 75MPH and managed to drive to an auto repair place before the engine overheated. The nice people agreed to drive me to work, fix my cracked radiator and take my money. Sweet. This is all my husband’s fault. Anything and everything that happens while he’s out of town I blame on him.
Anyway, talked to Dr. Med Lady, Lily’s psychiatrist tonight. Lily is still lethargic, sleepy and complaining of headache and stomachache. Dr. Med Lady thinks that Lily seems to be super-sensitive to any medication. (Ha… super-sensitive. No kidding. What is she not super-sensitive to?) Dr. Med Lady thinks that the Intuniv dose is too high for Lily, but this long-acting pill doesn’t come in a smaller dose. The only other choice is to try the short-acting lower dose, but it may wear off after lunch. We’re gonna go med free tomorrow and then get the new prescription refilled over the weekend. I like Dr. Med Lady.
At the store tonight, on our way through the girls’ department, Lily spotted a black zip-up hoodie that had super-soft fleece inside. She loved it and kept saying how soft and cozy it would be, so I bought it for her. She does like to bundle up to help filter outside stimulation. Before she discovered hat-wearing, she always wore a hoodie. I didn’t get it until she told me that it muffled sounds and blocked the lights at school. Now she almost always wears a hat, sometimes even in summer.
Lily has very specific qualities she looks for in a hat. It must cover her ears to help block sounds. It must have a brim to block light. Oh, and it must be cute. These actually aren’t easy requirements to fulfill. So I’m always on the lookout for the right kind of hats.
In the car on the way home, Lily and I practiced what she would say if a teacher or student questioned her about wearing a hat in school, which is against the rules.
Teacher: You there, take off the hat!
Lily: It’s in my IEP. (that seemed like the simplest response to teach her)
Obnoxious Student: Why are you wearing a hat? Hats aren’t allowed.
Lily: It keeps my brain from falling out.
A Taste of 6th Grade
John took Lily to 6th grade orientation today. Sounds like it went well. She seemed excited and confident when she was telling me about it tonight. When I left this morning, she ran out to the car and told me that she was scared to go to orientation. I told her that was normal and reminded her that her dad was probably nervous about it too. He doesn’t like new situations either. She wanted to review where everything was at school, so we drew a map and talked it through.
John said she remembered where everything was and showed him all her classrooms. She’ll be in the two Gifted and Talented classrooms for most of the day, which we’re hoping eliminates some of the classroom-switching chaos. As a twice exceptional kid, Lily doesn’t do well with transitions and change, especially when she’s overwhelmed in a loud, crowded situation.
Lily practiced opening her locker and saw a lot of her classmates she knows from elementary school. Dad said the orientation was crowded and sweaty and loud, but that Lily handled it really well–didn’t get overwhelmed. Help from the new meds? Can’t tell yet. But she did seem less tired tonight.
Sleepy Pete
Summer’s almost over, time to make yet another attempt to dial in Lily’s medication. We haven’t found the right meds yet. We’re been trying since 2nd grade and now she’s going into 6th. We’ve tried almost every kind and have come to the conclusion that stimulants just don’t seem to work for her. Some of them suck all the personality out of her; she withdraws into a hoody with dark circles under her eyes. Others seem to make her more irritable and moody. All of them take away her appetite and make it even more difficult for her to sleep.
Lily’s never been a great sleeper. As an infant she needed lots of movement to fall asleep–rocking, walking, jiggling and once she finally fell asleep she was easily awakened by the slightest noise. Friends would describe taking their baby to parties with them and letting the kid sleep in front of the speakers. We had to tip toe around the house to keep our baby asleep.
As a toddler, we worked hard to establish a regular bed time with minimal parental book-reading and drink-getting. Eventually, Lily was easy to put to bed, but it took awhile for her to finally fall asleep. She is still that way and has a hard time settling down at night. I’ve heard that a lot of kids and adults like Lily have a hard time turning their brains off at night.
This leads me back to Lily’s medication. After meeting with her psychiatrist, we decide to try another direction, a non-stimulant drug called Intuniv. Intuniv is a long acting form of Tenex (guanfacine). Although Tenex is primarily used to treat high blood pressure, it is often used to treat children with ADHD. Lily’s doctor thinks that could help with the anxiety of starting 6th grade. Lily has been on it a few days and has been sooo drowsy. I come home from work and she can hardly keep her eyes open until bed time. Hmmm… we’ll have to keep a close eye on that.
Brainhugger 