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.
