Tuesday, April 29, 2014

Neuropsych visit

I am still working down in Cannon Falls for a few more days, so life seems a bit nuts in general right now. Working away from home in addition to working from home in addition to managing family stuff....sigh. I often wonder, What are we doing to ourselves?! Dan and I have created such an unconventional and strange life for our family. We have found a way to have at least one of us at home most of the time with our boys, which is so incredibly awesome. It has been our ultimate goal to have at least one of us here for the boys while they are little. But we work so hard for it, and some seasons can be pretty challenging (cue now). Dan leaves for a ten-day DC trip on Thursday. Then skydiving season will be in full swing. Then wedding season starts. Then then then... We'll all be back together as a family in October! :)

I brought Elijah to his appointment with his new neuropsychologist today. The newest new doc! Do you have any guesses about how awesome he was? Elijah has a record for having only the BEST doctors, and this one was totally top-notch, right along with the others. Perhaps I should start another side business involving connecting parents with the most excellent pediatric medical care in the Twin Cities.

Dr. M (#2..this is our second Dr. M) was seriously awesome. Compassionate, understanding, kind and super smart. He took as much time as necessary (3+ hours) to fully understand Elijah. As he explained to me, he wanted to get inside Elijah's head and understand how he operates. He took an entire hour and a half with just him...asking questions and performing memory, attention and academic "tests." Then he talked to me one-on-one for over an hour.

He needs to sort through his results before giving me a concrete report, but he shared some preliminary thoughts with me. First of all, he hates labels (I love this). I shared with him that some people in the school system and in the medical world have mentioned labels such as EBD, ADD, ADHD and autism. His response went something like this: ADD? Autism? Elijah doesn't have either and should not be labeled as such. Does he have qualities from these diagnoses? YES. He most definitely has attention issues and social issues. Do these issues stem from ADD and autism? NO, most likely not. [insert him holding up E's rap sheet of medical procedures] THIS is likely to blame, and for good reason. Major things happen in a person's body and mind when they endure major operations or health issues. Take that times a hundred in Elijah's case and there are going to be things that are seriously delayed. This is not a case where we want to put a label on a child, unless the label is....JUST BEING ELIJAH! This is who Elijah is, and everyone who interacts with him needs to know what he has endured in order to help their understanding of him. Without a desire to understand his background, he wouldn't make sense.

I so appreciate this. Like Dr. M#1, he gets it. He totally understands. He sees Elijah's arm flapping and repetitive talking and doesn't make judgments or place mental labels. He sees his history and he understands that this is just who our boy is!

He agreed that his Deaf and Hard of Hearing label at school is necessary for now, but that we need to get him under a different label eventually (asap). He is not currently getting the support he needs with his social deficiencies. This is something at the top of our list going forward. Dr. M feels that his social immaturity stems from a slow development and immaturity, which inevitably has led to anxiety. His initial thoughts are that anxiety (and sleep issues) are at the root of most of his challenges.

I have an appointment scheduled for May 12th to go over final results, so we'll receive further thoughts/results at that point. Elijah has never fallen into any specific category, but has always displayed characteristics of various "disorders." I think we are learning that he is just....Elijah! He is just who he is and we love him for it. I'm feeling super thankful for another incredible, smart doctor who was put in our path! By the way, this amazing Dr. M is more than willing to COME TO IEP MEETINGS! I love him. Elijah....no, all of us...are so blessed.

Thanks for checking in! Tomorrow I'll be going on a rainy and cold field trip with E to a nature center. We're excited!

No comments: