Category Archives: Advocacy

Zoolandia-The Sensory Eval Pt 2

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.


Atomic Mom Freak Out

Ok, I had a complete emotional freakout at Back to School night tonight.  Me, the mom, not the 10-year old with the emotional regulation issues.

It started a few weeks ago with a couple of miscommunications with Lily’s new school, one of which was the fact that when they gave us her school schedule, she didn’t have the electives that we had talked about at her IEP Transition Meeting.  When I spoke to one of the school counselors about it, he wasn’t familiar with Lily’s IEP and told me that all the electives I thought she would be most comfortable in were full.  I emailed the team at school but didn’t hear back.  Lily told me she was okay with the electives they gave her so that’s what we planned on.  Lily reviewed her schedule many times, even walking around the house and pretending to walk around to all her classrooms.  Sounds good, right?

So, I rush home from work to make it to Back to School night, but I’m stuck in traffic, stressed because we’re going to be late. I start feeling sorry for myself.  My husband is out of town and I have to handle this back to school stuff myself.  Then I start getting irritated with him because I talked to my neighbor today and she was telling me about parent portal passwords, after school activities, blah, blah, blah and when I ask where she got the info she tells me at the orientation last week.  She says there was a manned table setup with fliers about all this stuff.  I immediately know that the father of my anxious child would never have stopped by one of the tables and picked up fliers because he would have had to talk to the strangers and figure out what the fliers were and which ones to pick up.  Arghhhh… sometimes his weirdness is annoying.  Until we started figuring out all this stuff about how Lily works, I never realized how much of the stuff he has…. not the ADHD, but the social anxiety.  He hates new situations, big group situations and talking to people on the phone.  In the 25 years I’ve known him, since high school, I have helped him compensate without even knowing it.   Okay, anyway… back to my freakout.

I stop at the house to pick up the girls and they aren’t ready to go and haven’t eaten any dinner.  I yell at them, which gets Lily upset and she starts muttering that it’s all her fault.  I give them a ham and cheese rollup and in the car I try to get myself together again.  I tell them I’m sorry for getting upset, but that I’m stressed because I’m late.  I jokingly tell Lily that I need to work on regulating my emotions and she laughs.  I explain that I’m going to calm myself down by talking to myself and telling myself that I can’t do anything about being late and that’s not worth being upset about.  I tell them that I’m going to try to think about something else to try to clear my mind.  Okay…. nice self-talk, right?

We walk in and the gym is so full that people are spilling out into the hallway, blocking the doorway.  I push our way through, we stand in the hot gym and I realize that I’m feeling very agitated.  Now we’re supposed to walk through our child’s schedule with them.  When we get to her first GT classroom, her teacher hands me a sheet of paper.  It’s a new schedule for Lily with different electives.  I’m immediately alarmed… you can’t just make a sudden change like this for a kid like this.  Lily sees my face and looks at the schedule.  She’s shocked and then upset.  I try to make the best of it for her… Shop class (or whatever they call it now) and Keyboarding.  Those are actually two great choices for her.  She’s very Visual-Spatial and she wants to be a car designer when she grows up so Shop will be great.  She is also going to use a keyboard for all her written work at school, so more keyboarding skills can’t hurt.

We move on to GT Math.  In the hall, I pass a friend who also has a 6th grade kid with Sensory issues.  She asks how I’m doing but then sees my face and says, “Overwhelmed?”  I nod and she nods in agreement and says, “Call me.”  It’s briefly comforting to know I’m not the only one.

In math class, the pit in my stomach gets worse.  I can hardly follow what the teacher is saying… Math Minutes, Math Timer, Math blah, blah.  I want to ask for more information on all these workbooks, but all the other parents seem comprehending and composed.  The teacher says that the students will have to copy their math problems from the math book on to paper.  I’m thinking, Lily can’t do that… doesn’t she know that.  Teacher says no calculators.  Lily’s IEP says she can use a calculator.  Visual learners often had a hard time with rote memorization and so have a hard time moving on to more advanced mathmatical concepts because they are stuck on simple math facts.  A calculator is a huge help.

Lily was starting to get that look on her face.  I look around the room and notice that none of the lights had the light filters on them. The filters are pieces of fabric that cover the lights and attach with magnets.  Lily can see the flicker of flourescent lights and they give her a headache.  They installed them in her elementary school classroom and they made a huge difference. so we made sure to put the light filters in her IEP.   The story of the voodoo eye doctor will have to be for another post.  In the classroom, I was getting pretty upset. Had everyone forgotten everything we’d talked about at our meeting?  Is this what I was going to have to fight all year?

After her presentation, I approached the teacher and asked if we could talk before school starts.  I was caught off guard when she said, “How about next week?”  I told her I meant tomorrow.  She said no.  No?  Who says no?  She said she didn’t have time.  I was so startled and immediately so angry, I turned and left.  I was trying not to cry.  WTH?  I went back in the room and immediately burst into tears.  I told her that I wanted to talk about Lily’s organization and how we were going to get information back and forth and some other IEP issues.  She was short with me and said that we had already taken care of that in our IEP Transition Mtg.  I was stunned.  I walked down the hall crying and passed by the other GT teacher.  She asked if I was okay and I shook my head no.  I took Lily to her two ‘new’ electives, all the while trying to decide what to do.  This isn’t going to work if the communication is this poor.

I decided to stop back in the first teacher’s classroom.  One of the counselors who had been at the IEP mtg was there.  They both asked me what was wrong and I started crying again.  I started a big speech about communication and explained why the sudden change in electives was not a good thing for Lily.  They both told me that they had all met to talk about Lily today, even GT Teacher 2.  They assured me that they would make sure that everything in her IEP was taken care of, that they had ordered the light covers, that she could use a calculator, that they planned to talk with Lily about her BSP and explain to her where she can go when she needs a quiet place.

We probably talked for 45 minutes and they were so reassuring, just as I remembered GT Teacher 1 to be from meetings and visits.  In fact, GT Teacher 1is the one who finally convinced me to give the public middle school a try.  After our IEP Transition Mtg in the spring, we talked for a long time and GT teacher 1 told me that she wanted to try to help Lily and that she was up for it.  What more could you ask for?  A teacher who is passionate about figuring out 2E kids, who relishes the challenge and who will be there to make sure this kid doesn’t get lost in the system.  Tonight, she was just as kind, hopeful and encouraging as I remembered and she didn’t even look at me like I was completely insane for losing it.

P.S. I noticed that somehow Lily had managed to sneak “Ye Olde Spice Bag” into her locker.  No, I don’t think the other middle school students will think it’s weird when you sniff mustard seed between classes.

Dreading the start of middle school

The countdown is on.  The day I’ve been dreading all summer is just around the corner… Lily starts middle school in a week and a half.  I’ve heard that there are other parents who actually look forward to sending their kids back to school.  I can’t imagine that, because for me, the school year is a lot of hard work and with Lily starting middle school, it’s going to be even more stressful.

This morning, I set up a special visit to her new school.  I know Lily needs extra time to learn her way around.  We walked around to all her classrooms and she was okay for awhile, but eventually she got overwhelmed and started to get upset.  She wanted to know exactly how things were going to happen, where they were going to happen, when they were going to happen… starting with getting off the bus–step by step.  I tried to do that and she seemed to calm down.

We still have 6th-grade orientation and back-to-school night before the first day of school, so I’m hoping that helps.  I mean, this is a twice exceptional kid who has months of adjustment every school year and this is at the same elementary school she’s been attending since Kindergarten.  A new school, plus all the added Executive Function demands of middle school… could be a rough transition.

That’s actually an understatement.  I’ve been trying to plan for her middle school transition for more than a year.  I shopped around for public schools, got Lily several evaluations, found her a psychiatrist, a psychologist, taught myself to advocate for her at school using www.wrightslaw.com and the book Wrightslaw:  From Emotions to Advocacy, shopped around for private schools, wrote demanding letters, attended many meetings, helped write a Behavior Support Plan and helped write a comprehensive IEP.  Thousands of hours and dollars later, I feel like we have good support in place for her, but the real test comes in a couple of weeks….

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