I just want to list our professional “team” of support, in case someone feels we may have missed someone in our journey to heal. No, it isn’t really anybody’s business, and I really do understand that everyone is really just trying to help. I appreciate it. I WANT help. I could be wrong, but I do feel we have got it covered as far as the professionals are concerned. And if we don’t, I cant imagine how we would have time to squeeze in any more. We need the sort of help that will free up our time, not take up any more. I’ll write about that another time.
I put the word team in parenthesis because, generally (with some exceptions) these people, sorry, professionals, don’t speak with each other. I never would have guessed how difficult it is to get a neurologist to speak with a neurosurgeon, let alone have a psychiatrist speak with a psychotherapist. Weird, but there you have it. In fact many of them don’t even read the records which we painstakingly have signed more releases of information than I’d care to count. I even hand deliver them and have gone as far as simply getting copies and lugging them around everywhere with me. I get it, it’s a complicated case, they’d rather just hear it directly from us….in 15 minutes…sigh.
Here is the list for our family:
We have a general family practitioner (MD) who does actually read his records and speaks with others and like our therapist has been quite a workhorse in our behalf.
Our therapist is a licensed masters level social worker. I’ve already discussed her in another post, but she is most competent, and also refers out us quite a bit, while keeping informed on results from the referrals.
We are working with three different school counselors. And teachers, too many of those to count, but obviously very important, vital even, in our journey.
We have worked with (last count) four different psychiatrists and that does not include Fairbanks’ psychiatrist. While I understand their value, and can greatly respect their expertise, none of these spend enough time with their patients to fully comprehend the problems. Their expertise in in medication and they love prescribing more of it, yet aren’t around to see the effects of these sometimes very dangerous drugs. They rarely agree with each other so they switch you back and forth with little regard to what the other prescribed. Again, not always, just in general.
We have two neuropsychologists, one for the bigger people, one for the little people. They do a lot of testing, not a lot of advising, and speak a different language. But I too, can be taught, and am learning to speak nuero-psychobabble with the best of them!
We have a neurologist, pediatric neurologist, three neurosurgeons, none of them agree or speak much, so little need to learn a foreign language (but of course I did, just in case I came across a particularly verbose variety).
Oh yeah, there is another MD we see for Fred, he also prescribes psychotropic meds, but he takes a bit more time to speak with us…a bit, doesn’t speak with anyone else though.
There is the occupational therapist, three different school nurses, and special education counselors.
There is the department of vocational rehab counselor, employment specialist, ACCESS (something to do with disabilities and independent living) counselor, and all the red tape sort of people in social security disability, unemployment, Denali Kid Care, COBRA, our medical insurance, and most likely very soon food stamps and Medicaid and foreclosure sort of red tape people.
We are supposed to be attending a support group for traumatic brain injury people, and have an appointment with a nuero-genetisit sometime this fall, (He only come up to Alaska once a year) if I can mange to find his name and number.
We have tried Co Occurring Disorders Institute training and support meetings, and our Church’s version of a 12-step addiction program, and one other therapist through a state sponsored clinic. We tried several different MD’s to help us manage our weight gain and stress levels but with little lasting results,
We used to have a case manager to help us coordinate all of Fred’s care, but after Fred’s surgery she was taken off our case, LOL. Of course she was the second case manager, we fired the first one.
We have a nurse practitioner, an alternative healing therapist, and a chiropractor, all of whom we also see regularly.
We are supposed to get a physical therapist for the younger ones, but the schools decided to disagree with the neuropsychologists recommendations. I guess they know best? It is a fight I have decided to out to the side for the moment. So the boys are uncoordinated, we have bigger problems right now. They all need tutoring too, but again, priorities, I’m grateful they can add two and two and read….it’s more than I can do most days.
As stated before, we tried fasting, praying, priesthood blessings, family home evenings, exorcising our demons, going to more church, participating in more scouting and church activities, paying our tithing, reading our scriptures, and losing ourselves in service, and consulting with our ecclesiastical leaders, humbling ourselves, repenting (repeatedly and often).
So what have I missed? Yes, we tried that too, we take pretty of vitamins BCDE and omega-3, and have a Seasonal Affect Disorder light. Essencial oils, crystals, herbs, exercise, meditation, positive thinking, energy work, and all sorts of voodoo alternatives. Trust me, I have no desire to remain ill and depressed, and I’ve tried everything I could think of including, (gasp) looking at myself, to correct these problems.
Oh…we also have an opthamologist, and dentist..have to cover all my tracks.
Exhausted? Yeah, me too.