Nonverbal Learning Disability

Today I met with Children's Dr to review Morgan's Nueropsychological evaluation. Add another diagnosis to the list..Nonverbal Learning Disability (NLD) :(
While this was disappointing to take in, the meeting and information he provided was fascinating and explains a lot of the behaviors and delays we see with Morgan so happy to have some insight and recommendations on how to best approach parenting and teaching situations. 
If you are interested in the specifics of what this means, keep reading, will try to summarize the key points of our discussion!  NLD is a disorder which is usually characterized by a significant discrepancy between higher verbal skills and weaker motor, visual-spatial and social skills..  This is an area we have been trying to pinpoint for months/years but it explains a lot of her visual spatial and slow processing time.  She is a strong VERBAL learner but therefore the use of visual cues (which is what her IEP and therapists often turn to in order to assist with processing/facilitate responses from her) do not help her with the absence of verbal instruction/scripts.  Basically we will need to focus on providing verbal and detailed language instruction for her to learn and follow. He provided her evaluation results and so interesting that all of her language and verbal memory functioning and comprehension is average for her age but all of her visual spatial, reasoning, and processing are listed as low average or mildly impaired.  So now what?  He gave us a very detailed report with some extremely helpful recommendations, books, tools, apps, music therapy, etc. - lots of reading and work to do here and hoping to implement these approaches and see some positive results!  He also has information and recommendations for her teachers and therapists and offered to take the time to speak with them or meet with them face to face - very impressed with this offer!  This is not a disability that will go away but identifying it at her young age is a positive thing and can learn to manage it to hopefully see that gap between her verbal and visual processing shrink versus grow over time.  We will meet with neuropsych every 2 years to reassess/test to check on progress and address any concerns. 
 

Neurosurgery follow up

Long awaited Neurosurgery follow up appointment today.  We spoke with Dr Petronio at length regarding some of the behavior we have been seeing, her scans, symptoms (headaches, lethargy, vomiting), etc.  I had a lot of questions after attending the Hydrocephalus Association convention last week! 
Her ventricles look fine, slightly smaller 4th ventricle but nothing to be concerned about and her laterals about the same (her shunt was set 20 higher since January so was wondering if that impacted but doesn't appear to have).  He did explain though that sometimes there will be situations with shunt malfunction that they may not see on scans - I was aware but surprised that apparently this is pretty common.  Scans can show the volume of fluid in her ventricles but do not give indication of pressure.  One option if she continues to have issues is to bring her into short stay and have them tap her shunts so that they can measure the pressure.  We will decide if this is something we want/need to do but of course with this comes some risk of infection so would like to hold off unless absolutely necessary. 
He had read her charts from the rehab doctor and spoke about some other behavior which makes him concerned that she could potentially be having seizures (not the first time we have heard).  He would like us to revisit this and referred us to the MN Epilepsy Group to schedule another EEG (she has had one but several years ago now).  So we are going to start with this and hope/pray this is just something to rule out!
Other potential causes may just be intermittent shunt blockage (constipation can even cause this) or migraine headaches.
He also offered to refer us back to a different Gillette's rehab specialist and assessed her right leg/ankle after the botox injections which he agrees is not the best we can get - mentioned to ask about potentially serial casting since her orthotics don't seem to be helping as much as we would like to prevent toe walking and inflexibility of her ankle.