The unfairness of special needs life
Bipolar Girl May 2013
For the record, this is not an intellectually-based, change the world type of blog entry. But that doesn't make it any less important. This is a blog entry about today. About Friday the 28th, which happens to be six days before the ninth birthday of a beautiful child that I prayed for before she was even conceived. When I took my daughter, Bipolar Girl (bipolar/LHON/ADD/pediatric migraines with aura/etc) to the Pediatrician's office because she had been on antibiotics (oral and ear drops) for a week and was still experiencing ear pain. Our regular pediatrician was busy, so I accepted an appointment with the Certified Nurse Practitioner (CNP).
I think it's important to note, as I cruise social media and am dazzled by all the highly polished blog entries written like doctoral thesis that those are important and absolutely belong in the world of advocacy for special needs. The parents, caregivers and educators in the special needs world are well-educated and have a passion for this life that few other fields can claim. I am proud to be represented by well researched, inspiring articles and blog entries that showcase again and again both the beauty and the curse of parenting and educating special needs and autistic children.
But this isn't one of them. Today, I am not a polished writer who has a social theory about autism or special needs that will change the world. Today, I'm the mother of a medically underweight almost nine year old who had a visit at the Pediatrician's office that neither one of us will ever forget. The CNP and I talked about her ear infection symptoms and how she had been on strong antibiotics for a week. I expressed my concern about the infection seemingly not clearing up, her pain, her nausea from the antibiotics and how I thought it might be moving to her chest due to a lot of coughing at night. My daughter was examined and her ear infection is being resistant to the antibiotics.
Then the CNP sat down and asked me about the coughing - did it happen only at night, what did it sound like, etc. When I inquired about the line of questioning, she explained that my daughter's chest sounded perfectly clear. She brought up my daughter's online medicine list and said that perhaps we needed to schedule an asthma check-up to make sure her symptoms were controlled. I corrected her and explained the steroid medications she was seeing were from the croup this past winter and I had repeatedly asked the staff to remove them from the active list.
"So your daughter isn't diagnosed with asthma?", the Nurse Practitioner inquired.
"No. She never has been. Her brother has an asthma diagnosis, but I never saw those symptoms in her." I explained.
The CNP explained that my daughter's strong allergies, a sibling with asthma, the coughing so strong it was waking her at night and more indicated the need for asthma testing. I agreed, on one condition. We had to be worked into today's schedule. I knew that between my anxiety and my daughter's constant worrying about developing more health issues that we couldn't take waiting until next week. The CNP recognized the strong anxiety in both of us and worked with the staff to allow me time to take the children for lunch and bring them back to test my daughter. My daughter is emotionally and physically challenged, but she's a very smart young lady. She immediately began questioning the testing process, what treatment would be like, would her activities be restricted. I played it off as a small chance that she would even test positive for asthma and calmed her. Inside, I was furious with myself. I had had the flu for the past week and hadn't woken for most of her "coughing fits". Nighttime coughing that wakes the child is a huge indicator of asthma and I had failed my child.
We returned after a stressful lunch and immediately began testing. I knew my daughter's tests results before the CNP gave them to us. My daughter could barely blow into the tube both before and after being administered the albuterol to open up her lungs. We moved from the testing room into an exam room and I tried to quickly work out how to handle my daughter. The CNP entered the room and Bipolar Girl immediately launched into demanding questions about her results. I begged the CNP's forgiveness for what I was about to say, then asked her to be careful how we discussed these results. I explained my daughter was intelligent and I would not withhold information from her - but she needed to digest this information slowly and calmly in order to prevent a mental health crisis.
I found the CNP to be a very kind, educated woman today who took the time to explain the symptoms and results to me today to any extent I wished to know. Before we left, she informed me she had checked with the office manager and our service-dog-in-training will be allowed to accompany my daughter on any future visits that I feel the dog is necessary to stabilize my daughter. That was when I started crying. I haven't quite quit yet.
My daughter is afraid. She's afraid she won't be able to breath, afraid she won't be able to run around in the backyard or go hiking as we have in past years.
I'm afraid. I'm afraid that the diagnosis will never stop. I'm afraid as my children age that they will be burdened, both mentally and physically, by more and more disease and depression. I'm afraid for my children as this divorce progresses. I called my estranged husband and explained both the diagnosis and how upset my daughter was to him. He choose to go play cards tonight rather than come comfort her.
Sometimes, we need stories from the special needs/autistic world that are raw, painful and powerful. Writers like myself should feel comfortable allowing the world to know that we spent the day holding our child, praying for the best and angry at a world that has been working on medicine for thousands of years but hasn't healed our children yet. For all the wonders in this world, today my daughter can't breath. And that is simply unacceptable.