For years, I've found blogging as an outlet to work through what we're facing, sharing our story with others to help them not feel alone in their journey, and documenting the journey for Reagan and Cole so they can one day go back and see how hard they've worked to get where they are. But I find it interesting that sharing has become so difficult for me. I've been blogging since Reagan's brain surgery and have been very open and honest about everything. The good, the bad, and the ugly. The celebrations and the tears. For some reason, I'm finding it much harder to share the behavioral and cognitive struggles than it has been the physical ones. But as I struggle through this, I feel drawn to write. Drawn to share. Drawn to help others better understand the raw and ugly side of learning disabilities. So much of social media today is sharing the happy times. And they should be! Parents should be proud of the awards their children are getting, amazing grades, championship trophies for sports or performances. But this time of year especially, I am drawn inward to wallow in the struggles of my children with other special needs parents. Feeling sadness for how our children sit in these ceremonies not feeling adequate to reach for any of the awards being given. Forced to question self worth and value amongst the overachievement that is so common in Loudoun County with many valedictorians having over a 4.7 GPA. And while I tend to get caught in the rat race, I remind myself that truly what is important in life is being HAPPY. Because what is all that success worth, if you aren't happy? But even happiness is about perspective...
I remember as a child having a friend Amanda whose brother had seizures. Until I experienced a seizure with Reagan, my perspective was, "no big deal, just make sure they don't hurt themselves while having one." I never stepped inside the shoes of that boy or that mother. What if Reagan is at the top of the playground equipment? What if she's driving? What if she's in middle school and wets her pants? How do I help her understand and prepare for that? Or do I not tell her and wait until it happens so she doesn't build anxiety for something we don't know when or if it will happen? Many times in the last ten years I have faced other people's issues very differently than before Reagan started having seizures because I quickly realized you really don't understand until you've faced something yourself or have been close to someone who has. Which makes me hesitate to share stories and struggles because I fear they will not be understood by all. And judgements are often quick to come...I know, I was there too before my eyes became wide open. But as I'm drawn to share, it requires me to share the raw side and therefore the gates are opened...
We just finished one of the hardest school years yet. We made the decision last summer to start Cole on medication to help regulate his behavior, stay on task, and most importantly, stop being bullied. He is so often misunderstood. In the quiet of our home, I get the sweetest kisses. He snuggles and reminds me how special I am to him. Yet he is pushed off his seat on the bus. Told he is annoying. Told to shut up. Regulating the medication has been so challenging. We started out slow, ramped up, and it still didn't work well. Then we moved to a long acting medication so he could make it home and get his homework done before it wears off. Then he became hyper focused on something unrelated to instruction and missed the lecture. So we switched again. All I have to say is that this juggle ain't no joke. Again, I always just thought, "so you have ADHD and move around a lot...big deal." Wow, I had no idea how it would affect every facet of our lives. His relationship with his friends, teachers, and even his own sister.
On top of these struggles is the big decision of how Cole should access his curriculum. Braille is coming very slowly. He's trying hard and doing well, but he doesn't see the value in this language yet. Statistically, the National Federation of the Blind states that 63% of adults with vision disabilities are unemployed. That's huge!
We requested another technology assessment and it was determined that the CCTV no longer works well for him and that he should have an iPad to access the curriculum. Although hesitant about how this will be integrated, I have to trust that we will figure it out. Unfortunately the rest of the children at our school are given Google Chromebooks but the applications he needs are not compatible on that device so he will need to learn to use both. I pray daily that we are making the right choices. That we are leading him down the right path. That one day he is accepted by others who understand Cole for the amazing, sweet child that he is. He has so much potential, it's just finding a way to help him while maintaining his self-esteem.
That brings us to Reagan. I've known the 4th grade curriculum would get harder, but I had no idea how intense it would be. Reagan worked SO hard this year and we are SO proud of her. Just as she has faced her physical challenges, she has really tried to keep up cognitively. She studied a LOT more than most kids in her class. What has saved her this year is that her classwork and participation are solid. But for any given test we studied every night for a least a week. Unfortunately she struggled to grasp the concepts and dropped further behind throughout the year both in public school and in church school. I had her retake tests when she got a 1 or 2 (on a 4 point scale). And in my defense, she always brought her score up from failing to passing. On most weeks she had a spelling test on Friday plus unit quizzes, a test (either math, science or history) and a re-test. Unfortunately, the rigorous studying caused her to get very frustrated and feeling depleted. She started asking why she should bother studying when she's just going to fail. If you remember correctly, she lost her IEP last April because she no longer needed physical support (OT/PT) to access her education and had an Orthopedic Impairment diagnosis. To keep her cognitive goals she would have to go through re-eligibility to find her eligible under a different diagnosis such as Other Health Impairment. At the time, I was told she "wasn't failing enough" to be found eligible. So she has spent the last year "failing enough" which justified my request February 7th for a Child Study Meeting to determine whether assessments should be done to find the cause for these learning issues. In our meeting March 25th everyone on the team agreed testing should be done. I am still waiting for the final results from the school's testing which is due 48 hours before her eligibility meeting June 18th. In addition to the public school testing, we decided to have her independently tested by a neuropsychologist due to her complicated medical history. After spending several weeks trying to find a neuropsychologist, she had her evaluation June 3rd. Most places I called either had over a year wait for an appointment or charged over $3500 out of pocket. Even the place we chose wasn't willing to commit to how much we would pay after insurance because the number of tests they run is dependent on how she tested and how much more time would need to be spent writing the report. Unfortunately they now need 4-6 weeks to write the report findings and then we will schedule a call to review them...so it won't be completed before the June Eligibility meeting. I plan to request at the meeting that we postpone it a month and hopefully have the results for a late July meeting. If not, there are no eligibility meetings in August so it would have to wait until September. That would mean the IEP would not be in place until November...which is halfway through 5th grade...and the process started February 7th.
As if that isn't enough, we're noticing an increase in the tone of her muscles on the left side. She was in tears over Spring Break because she keeps tripping from her toe drop and she gets scabs on her toes when she wears flip flops. So I've made an appointment with the physiatrist to talk about trying Botox again and possibly getting a night brace. We also saw the neurologist and talked about the challenges at school and he has requested an EEG to rule out subclinical seizures that could be causing the attention issues and increased tone. On top of the EEG this week, she also has her annual appointment with the pediatrician and will be having three teeth extracted.
It's hard to explain the feeling of lack of control when it comes to the behavioral and cognitive issues. I feel like the physical issues have clear solutions. Regular therapy. Constraint therapy. Cranial helmet. Leg brace. Eye surgery. Medicine. But when it comes to cognitive and behavioral, the answers are so much more fuzzy. They are more based on perspective and the direction is not clean cut. And yet the need to solve them seems so much more intense. Perhaps that's because the kids are getting older and can verbalize how it makes them feel. Or because you notice their perception of self in a different way. Having a background in psychology I've studied how you are affected by the world around you and I know all too well how that shapes who you become. Does it encourage you to be understanding or cynical? Does it help you be more accepting or bitter? Do you blame others?Does it turn into self loathing? We all know these people. We can all become these people. But how we feel about ourselves is the core element of being happy....which truly, if all things are equal, happiness should be our focus. And yet I find myself pulled into the abyss of tutors, advocates and new theories and programs to solve each of these learning disabilities. Everyone you talk to has a different answer for how to solve it. If only it was as easy as just being happy....
Maybe, just maybe, happiness is in the every day when you stop thinking and you just enjoy life. Happiness is in the smile, the laugh, and the memories that you build every day. Yes, I will hang my hat on that! Happiness is my feet in the sand, a sun kissed cheek and a head full of sand !
