Last week, I was informed that we only have seven therapy sessions remaining to get Jake up to speed before our insurance runs out. I had one of those unnerving experiences in which I realized a whole lot of medical professionals were standing around looking at me, waiting for me to make a decision which I was totally unqualified to make. In my life soundtrack, this is where the cricket sound occurred and I said something really coherent like, “Uuuuuuuuummmmmmmmmmmmm”.
The problem is that Jake needs about 25 more sessions of occupational therapy, around 50 sessions for physical therapy, and we all agree he needs speech therapy. I’ve been wanting to explain Jake’s bizarre little language away by telling people that he had been born in Mongolia. Since even my derelict math skills can figure out that 25+50+? adds up to a number greater than 7, I knew we were in trouble. And, I had no idea what to do about it.
I’ve recently been feeling the strain of not knowing what to do for Jake. I’ve known that our care, while very good, has been fractured. Doctors don’t talk to each other, therapists respect each other, but don’t work together, Jake’s medical file isn’t easily accessible, so I have to start from square one every time I see a doctor. I’ve often had to defend why we are doing what we are doing and one time, I even had to tell a doctor that he was the one who recommended that we get help. Things have fallen through the cracks and I have been concerned that we are missing important things. The missing link in our care has been a qualified medical professional to oversee and manage Jake’s care.
After hearing that our insurance was running out and being asked make decisions I wasn’t qualified to make, I knew I somehow needed to find that missing link. And quickly. I made some calls and found a highly recommended developmental pediatrician. My plan was to bring Jake and his entire medical history and throw ourselves upon the mercy of yet another doctor and hope for the best.
I’ll skip the whole maddening story about how I came close to cursing and lighting things on fire in an attempt to get Jake’s complete medical records. Let me put it this way, sometimes there is a great payout to making friends with the super cranky lady who, when she is inspired, isn’t afraid to yell at the person refusing to give you your child’s medical records. Anne, you are truly amazing! Even though you routinely answer my calls with, “What?!”
Within a few minutes of meeting with our new pediatrician, I knew that we were finally on the right path. The doctor asked about a thousand questions and I kept feeling like he was stirring my brain, hoping that the good stuff would rise to the surface.
Our conversation mainly centered around my desire to get a professional on board to help me set the correct path. Up to this point, I’ve been a good advocate for Jake. The keys to getting what we’ve needed have been arming myself with as much information as I can get and not giving up when I’m told something I believe to be incorrect. While my desire to help Jake will never run out, I’ve reached my limit in knowing what to do. I simply don’t know enough about services, programs, therapy, insurance, and the inner workings of medicine to be an effective advocate for Jake. The amazing thing is that there is a woman on the staff at the pediatrician’s office whose sole job is to be our advocate and to wade through the forms and hop the roadblocks. Within the next month, she is going to be taking over all the calling, yelling, researching, and lighting things on fire for me. I can’t adequately communicate how much better I’m going to sleep without all of that on my plate. Most importantly, it will free me up spend time with Jake and to take care of both of us.
This group of doctors also believes in a holistic approach to medicine. They believe, as do I, that environment and a myriad of other things, affect a child’s growth, behavior, and happiness. They will provide services for Jake, but also for me to talk through how things are going, how I’m feeling, our stress level at home, etc. Yesterday, I felt a little like the yellow chair I was sitting on might suddenly recline into a psychiatrist couch as the doctor said, “But, how do you feeeeeeeel about not fitting in with the other soccer moms”. Not too many doctors give a damn about how I feel about any of this, so even though it got a little awkward, I appreciate Jake’s doctor asking!
The doctor brought up a lot of great points, good things to think about, and I didn’t feel like he was making snap judgement calls on us as a family. He didn’t recommend a hundred changes right now, but a lot of changes, for the better, will be coming soon. For example, Jake can’t handle taking vitamins since the liquid form is terrible even when stirred into his food and he can’t chew, so the chewable kinds aren’t possible. But, he knows about another few kinds that are designed specifically to be presented to kids with Jake’s issues. It seems like a little thing, but five or ten little things like that may add up to a much healthier little kid overall.
Our doctor is going to do some more research, review Jake’s entire medical file, involve the advocate in our case, give me some time to think up more questions, and we will meet again in a few weeks. He assured me that there are many avenues to explore and that I shouldn’t be concerned about our insurance running out on us. We will continue to move forward with Jake’s various kinds of therapy and by the time we meet with our doctor again, we should have some answers on what the next step is going to be.
I am so thankful that we’ve found an advocate. I have a feeling that the next few months are going to be mentally exhausting as our doctor picks apart our lives, but at least I won’t need to yell at anyone or light anything on fire. I can focus instead of my amazing little monkey and being the best possible mama for him.
What a huge relief that will be!