Saturday, September 14, 2024

Inside Out: Lydia's Version

Anxiety - yep, about most things.

Envy - uh huh, and wondering why she's different.

(scars, treatments, growth hormone shots, CPAP, IEP, doctors)

Embarrassment - it's real, and thankfully mild still.

Fear - yes, see anxiety above. 

Sadness - We're all a little sad this week, or disappointed, angry, grieving.


Lydia's anxiety has been soaring to new heights since early August. It kicked in at the last week of summer camp when she began to worry about 4th grade math. Then we had 2 excellent drop offs at school and it started crashing. We've had tears and sobs, running and refusing, worry and sadness, and more. We've not had a super consistent routine because we didn't need one the last two years at morning drop off. Either one of us could take her, early or right on time, skip YCare and be a walker - none of it mattered. 



3 1/2 weeks into the school year and we are tightening things up around here. After our typical solid morning routine at home, I'm taking Lydia to YCare between 7:30 and 7:45. We walk and repeat our to do list all the way there. "We buzz in, we sign in, we hug and kiss. To the stage for Lydia and to the door for mom." It's been in improving stages of success for three days in a row.  


This comes after a very hard and emotional Monday and Tuesday. We have some new news about Lydia since Monday and are grappling with that. Lydia is of the age that she picks up on things and asks more questions at the doctor, so it's me trying to listen and learn with the doctor, keep my immediate emotions in check when hearing new things about Lydia, and supporting her understanding and emotions at the same time.  I wasn't ready for it on Monday.  More in another blog, at another time. I'm almost ready.  


Friday, June 7, 2024

The bits and pieces I can't fix for her.

For all of 9 years we've mostly been able to help Lydia, or allow her medical professionals to help her , with medical intervention.  Surgeries, feeding tubes, trachs, medications, hormones, occupational therapy, physical therapy, assistive devices. When it comes to her brain, when it comes to any of our brains, it's a bit more complicated. 

Lydia was diagnosed with generalized anxiety disorder and combined type ADHD when she was in kindergarten.  She started a 504 plan at school in the first grade.  In second grade we started medication to help with her ADHD.  BVSD does reading and math assessments often and her scores started dropping in the second grade. Third grade was an absolute roller coaster.  Fourth grade, we'll start with an IEP.

A little bit about what all these things are first.

From https://www.verywellmind.com/:

Generalized anxiety disorder (GAD) is characterized by unfounded chronic and exaggerated worry or apprehension that is more severe than the normal anxiety most people experience. If you've been diagnosed with GAD, certain medications may be used to help manage your condition.

Combined type ADHD is a presentation of attention-deficit hyperactivity disorder characterized by symptoms of both inattention and hyperactivity-impulsivity. To be diagnosed with this type, a person must have six inattention symptoms and six hyperactivity-impulsivity symptoms.

From understood.org: 

504 plans are formal plans that schools develop to give kids with disabilities the support they need. That covers any condition that limits daily activities in a major way.

These plans prevent discrimination. And they protect the rights of kids with disabilities in school. They’re covered under Section 504 of the Rehabilitation Act. This is a civil rights law.

An IEP is more than just a written legal document (or “plan”). It’s a map that lays out the program of special education instruction, supports, and services kids need to make progress and thrive in school.

IEPs are covered by special education law, or the Individuals with Disabilities Education Act (IDEA). They’re created for eligible kids who attend public school, which includes charter schools.

Here is a handy chart to explain the difference: 

https://www.understood.org/en/articles/the-difference-between-ieps-and-504-plans

Lydia was so excited for third grade and she had the teacher she wanted with a great group of friends in class.  She was ready to go!  Lydia's maturity level is at least 1 to 2 years behind her peers because of her ADHD diagnosis.  We saw a lot of maturity in her this year, especially with regards to attachment issues, transitions, and knowing behavioral expectations.  Teachers at school and parents would comment on it.  I believe that this is what led to a successful Nutcracker snowflake performance by Lydia. In years past it would have never happened.  This year she stayed on stage, performed and didn't shed a tear.  She may have had zero finger nails the month of December because she was so nervous she chewed them all off, but she did it!

Lydia had a tutor that worked with her all year, twice a week.  Lydia did extra math work every week this year on top of the typical multiplication flash cards.  It was exhausting to fit in all the extra math work, the daily reading time, the flashcards, the extracurriculars and time to just be a kid.  Her teacher was amazing for her first and foremost but she was also a coach to me.  She helped me put the worksheets aside sometimes, just enjoy the story at night reading to her, and ensuring Lydia's brain had time to turn off and rest at night - for her to just be a kid. 


She remained exited about school through the year but it was quickly obvious that she was working so hard to focus and read accurately that any hopes of comprehension was out the window. Her assessment scores started dropping.  Her fabulous teacher recommended general education reading intervention and so we started that.  Thankfully we had that all year as we discovered other areas that Lydia could use a boost in to be successful at learning.  Her math became troublesome because the curriculum is so text heavy.  If you are giving it your all to read it accurately and you are not comprehending it, how are you going to figure out the math problem? 

In the new year we started down the special education path.  That looked like three things:

1. Lydia would take all the normal assessments for BVSD and the state testing would start this year.

2. Lydia would complete a few weeks worth of rigorous special education evaluation outside of class.

3. Lydia would spend a day at CMH with her psychologist to assess her behavioral health.

By spring she was wiped out, we all were.  Wiped out, tired, a bit sad, maybe disappointed or frustrated.  Not in her, she is working so hard, so hard every day.  Maybe a bit in myself questioning if I could have helped more, done anything different, not started her in school the year I did.  I go through peaks and valleys about all medical things related to Lydia.  Lydia has been teaching me how to be out of control for 9 years, why stop now?

During all this we continue to try different medications for her ADHD.  Some work for awhile and then shut down like she didn't even take anything.  Some work for a bit longer giving you false hope that you found the right one. I think we are on our 6th or 7th variation currently and maybe it's working, maybe not.  She certainly behaves better for teachers than her parents and when among good peer role models.  Most days we spend time with her morning and night, before and after meds.   It's hard to gauge what the meds are doing for her at summer school and camps.

Lydia also started sleeping very poorly again during all of this.  It was increasingly harder for her to get to sleep, stay asleep and sleep until a decent time in the morning.  It was not uncommon for us to be working on bedtime routine and falling asleep until 9 or 10.  Then she would wake up 6 to 8 times night and we would all wake up.  She'd get up for the day at 5:30 or 5:45.  She was tired but you wouldn't know it because she couldn't sit still.  We made a few medicine changes but it was restarting the CPAP that really did it.  We are all more rested these days with her asleep by 9, up at 6:30.


Okay, back to special ed and IEPs. Lydia's testing and assessments showed the need for an IEP, so we did all that work, had the plan written up just in time for school to end.  She'll start fresh with the IEP in 4th grade, spending time with a para in the classroom, spending time out of the classroom with some pretty awesome teachers and having all sorts of supports in place to help her with her inattention and hyperactive tendencies.  This summer she is attending the BVSD summer step up program in the month of June and that really focuses on reading.  She's working with one of the special education teachers this summer for tutoring in math and other things. She's attending camps in the afternoons in June and then full day in July.  Most of her camps are art related with a little slime, dodgeball, and cooking thrown in.  

Our journey continues.  

I told someone recently that all people have complex stories and they often start when they are children or teens.  My childhood wasn't complex.  It was super normal, on the rails, storybook.  I had the family, I followed the rules, got the grades, I played the sports, went to college, got a job and tada - nothing was out of place.  I was in control.

Lydia is my greatest adventure.  Lydia is my why.  Lydia is amazing, brave, and courageous. We are meant to be mother and daughter.  I hope I do right by her and I thank my lucky stars she is the ball of sunshine and energy that gets to teach me how to be a better person each and every day. 

Wednesday, June 5, 2024

2nd Annual Memorial Day Weekend Trip to STL

 We made it two in a row!  The P's from Indy met us in St. Louis for another Memorial Day weekend full of fun.  The girls took no time to refriend one another after the year apart.  I hope we make it a 3rd and 4th and 5th.  This trip we visited Grant's Farm and the Magic House, swimming in the afternoons before dinner and game nights. 









 I held that snake!







After the tulips and before the summer sun!

Lydia, Grandma and I took a 3 day weekend and headed to Hutchinson!  We went tot he salt mine and toured with our hard hats.  It starts on a big industrial elevator in complete darkness.  Then we were able to ride a train and a tram into the already mined areas.  Lydia loved it and will show you her salt if you come over sometime!



We ate a Bogey's because it seemed like a legit local establishment with cherry shakes.  
Cherry shakes is really all it take to get a Krupich to eat at your restaurant! 
I grew up on cherry shakes at Winsteads and out of the blender at home!



The Cosmosphere was SO COOL!  I think I liked it most, Lydia preferred the salt mine.  She said the Cosmosphere didn't have enough for her to do and was too much reading. ;-)





We finished up with a deliciously huge dinner at Carriage Crossing.  PIE!!!



The 3rd graders at LVE create a community together called Peanutville.  Lydia was selected to build the library based on a persuasive writing piece.  She designed it, wrote the supplies list, went shopping for supplies, and laid everything out for us.  We created this library as a family during the first week of May.  I'd say we did a pretty good job and it's a library I'd be proud to manage. 




We celebrated Dad's birthday at the driving range and with a great meal at Club 27.


For mother's day this girl gang went to play mini golf at the Nelson Atkins Museum. 
Really great course inspired by all the work in the museum.


Field Day and the Last Day of 3rd Grade concluded a rollercoaster of a school year.


 

Waiting for the tulips to bloom.

Post Super Bowl Victory Living


Valentine's Day at home and Grandma's. 
Parties at school on Friday.
What a bittersweet holiday it turned into.


Girl Scout Cookie Booth Time!
Lydia uses her head to keep the Lego container lid up while searching.


Dan and Lydia's proof of life photo while Mom was off exploring and relaxing in Costa Rica!


The bathroom remodels are finally reaches their conclusion.  
Just a little paint and towel bar installation is left!


Dad out of town. Mom out of town. Dad out of town.
It's been am month or a couple months of travel.
Breakfast for dinner and Mi Ranchitos!


Lydia decided to take ballet after the Nutcracker performance in December.
She's preparing for her first recital in June! 


Fixing dinner and scooting off to Casey's for a snack.


We needed a new tree in the front yard so we went after the Oklahoma Redbud at Suburban.
Golf carts at the plant nursery are the best.


Lydia made a tie dye pillow with Nana.


Annual eye visit.


Victorious concert in the kitchen!


Here are those new glasses.  
We've had hot pink (Kinder), light purple (1st), the brightest pink ever (2nd and broken with facial lacerations last summer, remember?) followed by bright blue (replacement!) and we're on to light pink.


Then pneumonia found us.  Lydia has crappy lungs to start with so adding pneumonia isn't super fun. It sure knocks her out with fever for a few days.  She lost 5 pounds.  She slept for hours and hours.  This time overlapped with Easter so that was low key and spent at home.  Luckily by then she had meds and was starting to feel better.  We were able to color eggs and do an indoor egg hunt. Her class made her a super cool sign and her teacher dropped it off with skittles!



She made it back to school in time for the eclipse!











 

Inside Out: Lydia's Version

Anxiety - yep, about most things. Envy - uh huh, and wondering why she's different. (scars, treatments, growth hormone shots, CPAP, IE...