Imagine a large granite table with four different puzzles on it. Each is 1,000 pieces, and every puzzle is unique. Your mission, should you choose to accept, is to complete the puzzles. There is ample time to finish the task, and you enjoy solving puzzles. You accept the challenge with excitement and enthusiasm.
As you sit down to get started, you realize something is not quite right. There are four puzzles, but there is only one box containing puzzle pieces. Ah, the catch. All the pieces to each puzzle are in the same box. There is only one box of pieces! How the heck is this going to work? You keep pulling out pieces, but you cannot figure it out. This seems impossible, and this is how I have been describing the past two weeks.
Todd and I want to camp with Emily. We want to utilize and enjoy the trailer we purchased last year. Our goal is to camp more as a family. Emily thrives when we are camping. She loves watching The Wiggles in the trailer. Her bed is cozy, comfortable, and most importantly, mom and dad are close to her at all times. The problem is we are having trouble lifting Emily into Todd’s truck. Getting her out of the truck is manageable, but loading her into the truck is a challenge. It is also something that cannot be done safely. We have been researching options to modify his truck. The best option would be to add an auto-access seat similar to the one in my Mercedes. (Shhh, we know my car is a Toyota Sienna van, but she doesn’t.)
Todd and I got an estimate to get the seat installed. This was easier to get than we thought it would be. The price, on the other hand, is a tough pill to swallow. We are working to get assistance with funding the seat. I was given a list of letters, records, and assessments that must be completed. I have spent hours working to get a denial of coverage letter from our medical insurance. I need medical records from each of Emily’s doctors and specialists. Emily must have a nurse evaluation through our regional center. The adaptation is not cheap, and due diligence must be done. I understand that. The main issue or obstacle is Emily’s new caseworker. While nice, he doesn’t seem to have a clue about what he is doing. He is new to this job and it shows. I am working on being patient, but patience doesn’t come naturally to me.
Emily will also age out of public school in June. Well, actually in August, but we have to find out if the district will allow her to attend ESY (Extended School Year), aka summer school. We must complete her EXIT IEP, and find an adult daycare program. I presumed we would just continue at AbilityFirst and did not think about the process. Her caseworker, the new and inexperienced one, gave me some options for three adult daycare programs. AbilityFirst was not on the list. My heart sank a bit. I began researching the choices provided. I made it clear to the caseworker that we wanted AbilityFirst as an option.
One of the programs is permanently closed. Shouldn’t he know this? The other two programs are for medically fragile adults. Have you seen Emily? She is a lot of things, but medically fragile is not one of them. Her teacher recently told me that Emily is the healthiest student she has encountered in her years working in special education. When Emily was in pre-school, she was the first student in Ms. Tracy’s class to ever get perfect attendance…I mean EVER. The entire process of coordinating the transition from school to an adult day program feels difficult and overwhelming. I keep thinking: it shouldn’t feel so hard. It should be easy. (Oh, the slippery slope of should.)
The remaining puzzles are a tale of insurance obstacles and authorizations for me and Emily. I had an EKG in January. Apparently, the lab results were lost, and now possibly found. EMRs (Electronic Medical Records) that the cardiologist states he sent to my PCP have not been received. My PCP doesn’t seem to have access to the EMR system. Now we wait for a fax or snail mail. I teased the nurse that I could die of a heart attack waiting for the results. I have found a keen sense of humor is a key skill to keep sharp and ready to practice.
Emily has authorizations for an ultrasound, lab work, and the geneticist. None of these appointments or labs have been done. Well, we tried the ultrasound and that was unsuccessful. A messy mix that included a squirming, non-cooperative patient, and a technician that was not experienced working with adults like Emily. Blood work has not been successful. Well, I have been too afraid to try after the epic disaster of the ultrasound visit. We are making progress on our referral to the geneticist. I decided I would wait for this appointment and then all lab requests could be attempted at the same time. There are more obstacles to clear, steer, and jump over, but I can see success on the horizon.
I hesitated to write this post. I questioned if there was value in sharing these struggles and my inability to cope with them with grace. I experienced a moment of clarity last Tuesday in the DBT (Dialectical Behavioral Therapy) class I am taking through We Are Brave Together. The therapist, Matt Metcalf, discussed that physical pain, among other things, can impact our ability to regulate our emotions. While trying to navigate all the obstacles over the past few weeks, I have been in physical discomfort. It has been cold here and my symptoms due to Raynaud’s Syndrome have increased. My hands, but mostly my feet, have been numb and uncomfortably cold. I just can’t seem to get or keep them warm. I have also had increased pain in my right foot due to other issues. My ability to regulate my emotions and walk the middle path has been tested, and I do not think I am passing.
The overwhelm I have been experiencing is real. I am not a unicorn. Parents caring for children with complex needs are used to fighting. They are used to fighting for services, procedures, equipment, and testing, along with a host of other things. Many parents struggle with their own physical pain and medical complications, while also caring for a child with disabilities. Most of the time we don’t talk about it. We don’t share the struggles. We endure in silence and that is unfortunate. In sharing our journey, the highs and the lows, we support others on a parallel path. They can be comforted that there are others out there that get it. Parents that understand. It is also a way to create conversations for change. When we know what the obstacles are, we can remove them for those that come behind us. Their path can be made a little straighter.
I had to take a moment this weekend to pause and step back. I told my accountability group that I was going to sit down with the box of puzzle pieces and start methodically sorting them. Once I have the pieces for each puzzle sorted, I can begin to put the puzzles together one at a time. There is time for these tasks to be completed and nothing is life-threatening. Things will happen at perfect timing and all things will work out. We will find a suitable program for Emily once she ages out of school. We will get an adaptive seat in Todd’s truck and travel as a family in the future. Eventually, both of our medical tests will happen. If we are meant to get answers, we will.
I am grateful that I have the skills to make the calls. I can complete the forms. The ability to be both persistent and kind is a skill I can activate. Generally, I communicate effectively. I am not patient, but I am developing the practice. Once I get the pieces sorted, I will confidently solve each puzzle.
3 thoughts on “Sorting the Pieces”
I’m so glad you put your feeling and thought to paper… others won’t feel so all alone
You’re a beautiful writer
In my prayers again tonight my friend as is Todd and sweet Emily
Beautifully written Billie. It gives me a small glimpse into not just the challenges in taking care of Emily, but the disjointed medical, education and support systems regularly throw up new barriers. Thanks for sharing.
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Thank you Mike. It is challenging at times and a cohesive, seamless system is a dream of mine.