We have been waiting waiting waiting for doctors and educators to connect, all the while watching Elijah's exhaustion and resulting behaviors spiral out of control. His tics are back with a vengeance, along with major blurting out, defiance and lack of emotional control. Things are unraveling again. We sent him back to school for the past few days and he did better overall while he was there (thanks to his amazing teachers, who are seriously AWESOME and doing so much to help him), but once he gets home he has NOTHING left.
The doctor we have been waiting on is the one who gave Elijah his NLD (and ASD) diagnosis. This doctor is REALLY smart and really knowledgable specifically in the area of NLD, but I don't necessarily get a super warm/compassionate/empathetic vibe from him. As the week went on I was becoming impatient with his lack of response (and I've bugged him PLENTY), so I knew I had to seek out other options. As I've said many times in the past few weeks, we just cannot go on like this.
On my drive to work this morning, I had a major A-HA moment! I was thinking about how his awesome, caring, wonderful teacher is a woman...and a mother...so why does it seem like she is having a hard time understanding the gravity of this situation? Then I thought of E's neuropsych (the doc we've been waiting on) and how smart he is and how much he knows about Elijah's specific disability...so why does it seem like he is having a hard time understanding the gravity of the situation? OH! Teacher is a mother but NOT a medical professional. Doctor is a medical professional but NOT a mother. THAT'S IT! So then I had the idea that I need to connect with NURSES (who are possibly also mothers). More specifically, nurses who work with Elijah's doctors!
I called E's developmental ped (another Dr. M) and spoke with his nurse and gave her our story. She promised to talk to Dr. M ASAP and get back to me. Then I desperately called Dr. G's (E's cardiologist) nurse, even though we believe his exhaustion is not directly related to his heart. After one minute of talking, she GOT IT. "Oh Megan, this is terrible, and I can totally understand your frustration with school and doctors, too!" She promised to talk to Dr. G and "prep" him, as E has an appointment with him on Monday. I don't know that it's entirely appropriate for Dr. G to write a doctor's note shortening E's school days, but I want to know that he could be a back-up if necessary.
Less than an hour later I received a call back from Dr. M#2's nurse. She relayed what Dr. M had said...we need to eventually address some anxiety issues, but obviously Elijah needs to be able to get through a school day without his brain shutting down. THANK YOU! I answered a few questions that Dr. M had for me, and the nurse ended with: "I'll be in touch soon! If Dr. M writes a letter to shorten E's school days, can I send that to your home address?" YES, PLEASE! I took that as a very positive sign and literally, physically shook for the next hour out of nervous excitement. Could we actually get a doctor's note? That would be incredible and it would carry so much weight. We stand by our thoughts that Elijah's days NEED to be shortened or he will no longer be able to go to that school.
Elijah will be in school for one day next week (one day cardio appt and three days MEA), so we will be able to get him at least mostly back to baseline. Hopefully by the following week we will have a doctor's note in our hands! To be continued!
Goodness, this blog has been WAY too serious lately. We need to throw in some fun! I have pics and so many Sammy funnies to share. As always, thank you for taking the time to check in here!