Dream

I believe I have mentioned this before but what I would do if I won the lottery would be to work at  the Yale Child Study Center. "Why?"you may ask.< Because it would allow me to be what Dr. James McPartland aptly refers to as a Clinician/Scientist by combining two of my greatest passions 1)  directly interacting with and improving the quality of life of children and their families and 2) Being actively involved in scientific research to improve identification and treatment of individuals with developmental disabilities.

Why Yale? They are involved in cutting edge ASD research including early identification, early intervention, Pivotal Response Training,biologically-based tools to for objective identification and treatment, and gender differences.

My personal experience with the professionalism and outstanding quality of care that my family and I received during my experience of learning that I had an epidermoid brain tumor as well as it's removal. Why me? Why would I be a good fit? Insatiable appetite for learning. Specifically, unlike most people who relax by binge watching television shows, I immerse myself in learning everything I can about my special interests of neuroscience as well as best practices in naturalistic/behavioral ASD treatment.

Clinical experience as a BCBA has helped me anecdotally identify the strengths and  weaknesses of various treatment approaches.

My thesis on audiovisual-speech perception in children with ASDs using eye tracking and ERPs as well as the influence of social functioning on performance. 

Personal experience of having a brain tumor in my frontal/temporal lobe and how it's effect on my thinking and behavior potentially including characteristics of how ASD presents in females (social anxiety, camouflaging, difficulty reading social cues, executive dysfunction, incredible ability to hyper focus, attention to detail, obsessive compulsive tendencies including controlling my food and pursuing my special interests, sensitivity to sounds, cognitive rigidity, social naivety etc.

Rundown

One of my favorite coworkers just recently returned for work after taking time off and upon learning that I was on medical leave sent a really sweet message to check in and offer help. I wrote her back giving an explanation of what has happened over the past two months and thought that I might be helpful to post:

Hi Janet! Thank you so much for checking in, you are so sweet! I am not sure how much how much you have been told about my situation but I am happy to bring you up to date: I had a grand mal seizure on November 24th in the bathroom of alls places and knocked myself out by hitting my head on the bath tub. Luckily my husband was home, dialed 911, and I was taken to the ER where they found a large mass in my right frontal/temporal lobe. I was then sent for an MRI where they determined that it was an epidermoid tumor that is benign but slowly growing and in contact with an artery. Me being me I did A BUNCH OF RESEARCH and found several neurosurgeons with expertise in this area, met with them, and was incredibly impressed by Dr. Piepmeier and his team at Yale. The craniotomy was done earlier this month and I am currently recovering at home with my family. Sorry for all the details but lol  I am not ashamed of anything (in fact, my research has revealed that the location of the tumor may explain a whole lot of issues that I ave experienced in recent years  including intense anxiety as well as difficulties with organizing, reading faces,  social interactions, mulltitaking, etc). I am going a little stir crazy at home because while I cannot drive, bend over too much, or lift anything more than 5 lbs (e.g. requirements for our job) I am intellectually starving and am frantically trying to put together my application for a neuroscience fellowship at the Yale Child Study Center before the February deadline because this whole experience has really inspired a new passion into the neuroscience of developmental disabilities. Once again sorry for the novel lol I hope you are doing well and miss you😊

Recovery and mental frustration

Almost 2 weeks post surgery and I am quite surprised at how well my recovery is going (knock on wood); I honestly have not had much physical pain at all.
update 1/28/2019< My recovery continues to go well mostly due to the fact that I my mom, dad, and husband, are serving as an incredible support system and really taking the lead in what is most important to me: caring for my daughter. I am really quite frustrated because I WANT SO BAD to be the engaged, active, and fun mom that I know I can be but I just can't (at least for a significant amount of time) largely due to extreme fatigue but also dizziness and pain if I overexert myself.
Another huge source of frustration for me is that unlike normal people who can relax by binge watching television shows, knitting, eating comfort food etc. there are really only 2 thing that calm me: walking and research. Luckily, my gross motor skills are intact and I go on nice long walks a few times a day while listening to research about ASDs and neuroscience. However, I realized that the deadline for my dream fellowship ;is February 1 and while I have brainstormed pages for my personal statement it is not complete and I need two letters of recommendation and will likely miss the deadline. It is unfortunate because this entire experience has ignited a new passion for the neuroscience into developmental disabilities and I this fellowship would be an absolute dream come as it offers the opportunities to expand on the knowledge>electroencephalography (EEG) and event related potentials (ERP) as well as eye tracking that I taught myself about for my thesis on the relationship between social functioning and audiovisual speech perception in individuals with ASDs. In addition, I would learn about >functional near-infrared spectroscopy (fNIRS), transcranial magnetic stimulation (TMS), positron emission tomography (PET). Most importantly, I LOVE Dr. Mcpartland's model of being a scientist/clinician  which means that in addition to conducting true science and research utilizing the amazing tools of neuroscience, I would idea also directly interact with individuals and their families with developmental disabilities and thus be able to satisfy my passions for research and improving the lives of individuals with developmental disabilities and their families .  Dr. Mcpartland brilliantly explaining this dream job in the first five minutes of the following lecture: https://www.youtube.com/watch?v=ihlsZwHAMwY. 

God please don't let Disney raise my child

My husband is wonderful and fantastic and does more than any husband I know. I mean he helps out with EVERYTHING cooking, watching Maeve, shopping, helping with cleaning, running errands ETC. I honestly thank God everyday for him and how I am so incredibly blessed that he does so much for our family. However, while he is an amazing father...not everyone is perfect. Yesterday I went for a run and when I came home he and my daughter were in the living room watching tv (okay it is the weekend, we do have a birthday party later in the day that we do not want her to be too tired for, no big deal). HOWEVER, the program they were watching was an animal nature show so I raised my eyebrows and quizzically asked  "what show is this?"  to which he replied "It's Disney, they know her age, it's fine." I raised my eyebrows even higher and questioned "they know her age?" and he responded "yes, I made her viewer profile so it knows her age and recommended this show." I couldn't help myself from smirking as I sat down to see how horribly this was going to go and I did not have to wait long until the program showed a cheetah eating an antelope while other cheetahs lurked around at which time I again questioned the choice of program. My husband responded by fast forwarding the program which bought us to a scene where a lone male antelope was "having his choice of female" which prompted us to burst into laughter as my husband turned off the show and suggested that we watch my daughter's very favorite program "Octonauts". I know right then and there that my surgery will be successful because Disney simply cannot raise my daughter.

Am I crazy?

Am I crazy to going ahead with this surgery? Should I watch and wait???? Now that I have GREATLY reduced my work load, I feel a whole lot less stressed and happier....am I just in the wrong job? Should I just accept that my brain is what it is (poor executive functioning an all) and that being a BCBA in Birth to Three where I have to organize multiple schedules and paperwork is just not a good fit? Should I try just having a handful of clients and take the whole watch and wait approach with my tumor? But then again it seems that every story I have read about an educated person (especially those in the medical field) have opted to have removal because while the tumor is slow growing, it is growing and a number of complications can arise including more seizures, meningitis, encasing cranial nerves and arteries.... Not to mention my host of personality/emotional and hormonal issues that could be linked to my tumor given it's size and location.
earlier diagnosis and complete excision or near total excision of this benign tumor can cure the patient with the expectation of normal life." I was supposed to meet with my neurologist today but the appointment was cancelled last minute because my doctor is sick (unfortunately everyone around here is sick). While I am glad that he took the times off and spare infecting others, I am a bit nervous because this was my follow up with him to fill him in that I will be having surgery to remove the epidermoid tumor.

The longest holiday season

It has been a while since I last posted but nothing is really new beyond waiting, waiting, waiting, and anxiety. Now I am a week away from my surgery and just want it to be over with, I hate waiting around, especially since i cannot drive (e.g. can't work, run errands, drive myself to doctor's appointments, etc). Of course I have had a lot of second thoughts about going through with the surgery but I know it is what is best for me and my family. I dread the long recovery (how will Maeve react to me being away? How will my impaired condition impact Maeve? How hard is this going to be on the ones I love and who will be taking care of me (especially mom, dad, and Brandon, Liz, and Don)how long until I can workout? how long before I can shower? how long before I can work? will it be painful? will the steroids make me a ravenous monster? how long until I can drive? will my scar look scary to Maeve and other children? when can I resume my daily life? Will I be able to return to being an active, engaged, and quick thinking BCBA? Should I change jobs?Should I follow my passion for research and apply to Yale? ) but hopefully I will look back a year from now with nothing but happiness and relief.


 I have read a number of studies in which removal of a legion in the prefrontal and temporal brain regions have resulted in improvements in depression, anxiety, and even Anorexia

• Caruso, R., & Piro, A. (2017). Why in the age of CT scans and MRIs is a brain tumour mistaken for a psychiatric illness?. BMJ case reports, 2017, bcr2017220131. doi:10.1136/bcr-2017-220131
• Madhusoodanan, S., Ting, M. B., Farah, T., & Ugur, U. (2015). Psychiatric aspects of brain tumors: A review. World journal of psychiatry, 5(3), 273–285. doi:10.5498/wjp.v5.i3.273
•  Levine R, Lipson S, Devinsky O. Resolution of eating disorders after right temporal lesions. Epilepsy Behav. 2003;4(6):781–3. Epub 2003/12/31.
• Wong, J. J., Huda, S., & Wieshmann, U. C. (2012). An unusual presentation of an epidermoid brain tumour: a tale of two specialties. BMJ case reports, 2012, bcr2012006546. doi:10.1136/bcr-2012-006546

Today was my last day of work and wow I am not the same practitioner that I used to be...I get overwhelmed very easily now, am unable to react quickly and "think on me feet" and just do not feel as engaged as I used to and I hate feeling so inadequate.