Tuesday, May 13, 2014

Huge puzzle pieces clicking into place!

For the better part of the past year, we have been waiting for the last of the puzzle pieces to click into place. I have felt so strongly in my heart that big stones were left unturned and that there was so much more to discover about Elijah. Things have become so complicated with him in the past few months and years. Sleep and attention and toileting and behavior and repetitious behaviors and social difficulties and outbursts and frustration and anxiety and tantrums have all compiled on top of one another. All of the above are affected by and also affect all of the other above challenges. I've felt like we have been slooooowly clicking puzzle pieces into place, learning more about how our sweet oldest boy operates.

After yesterday's appointment with E's neuropsychologist, I feel like we have gotten as close as possible to completing the Elijah Puzzle. Dan and I sat with Dr. M and listened to an hour and a half's worth of results/findings/thoughts/speculations/recommendations. We walked away feeling enlightened and excited. We have answers!

Dr. M began by talking about the things we already know. Elijah has an extensive medical history. Medical incidents/diagnoses stacked upon hospitalizations stacked upon health issues and intubations and anesthesia and a lack of proper blood flow/oxygen and significantly delayed development...his medical history in itself is a lot to comprehend. When all of the above is present, particularly a lack of blood flow and oxygenation, the brain can be affected. The main guess at this point is that certain pathways in Elijah's brain were damaged due to any or all of the above, which caused his brain to create new pathways or ways of being wired. We'll call them Elijah-ways. In certain ways, Elijah's brain does not process information like most brains do. Certain tasks that come easily for his classmates/peers are VERY challenging for him.

First of all, Dr. M totally and completely ruled out ADD, ADHD and OCD. Interesting! But it will all make sense in a minute.

Elijah received three new diagnoses, all of which we believe will help him immensely in the school system and at home and in the world, as well. We have known since he was a baby that Elijah has displayed "tendencies" toward autism but given his desire to engage others and to be social with others, his doctors and educators have always shied away from this label. Dr. M thought that based on the description of his struggles in the social/cognitive realm and based on the information I provided at our initial consultation, Elijah is indeed on "the spectrum." He sees it more as a way to focus on appropriate intervention for him than anything else. He can receive a more appropriate label at school and get help in many other areas than just deaf and hard of hearing. Dr. M explained to us that he has classified Elijah in the highest functioning category of ASD. Most likely, he was not genetically predisposed to have ASD, but came by it through other means (extensive medical).

His second diagnosis is called Motor Dysgraphia and this indicates that Elijah has significantly impaired perceptual-motor difficulties and visual-motor integration due to motor delays. If somebody asks him to write five perfectly-formed sentences in five minutes, he physically would not be able to complete the task. He has always had significantly delayed motor skills. He has come SO FAR, but this still really limits his abilities which is why the doctor wanted to give it a label. It is significant enough that it needs to be noted in medical terms.

The third diagnosis was the most interesting and for Dan and me, the most important piece of the puzzle thus far in Elijah's life. This is the piece we've been waiting to click into place for YEARS. He has what is called Nonverbal Learning Disability, which means that he is unable to process information that enters his brain in any other way than verbally or through written words. Pictures and visuals mean NOTHING to him. They confuse him and frustrate him. He can look at a picture of a person putting a finger to his mouth and not have any idea that that means he should quiet down. In fact, he becomes frustrated about not understanding what it means and acts out in response.

In order for Elijah to understand a concept, he needs to hear it verbally (or see it written...or both) in very literal terms. He cannot connect dots or generalize or perceive body language/social cues or draw a picture of a generalized concept. He scored "superior" in the areas of auditory attention and verbal fluency during his recent testing, but was "borderline impaired" on much of the visual portions. At times, we have been speaking a language to Elijah that he does not understand.

This changes so much! And this explains the OCD/ADD characteristics we've seen recently. These qualities have most likely been a result of anxieties surrounding being misunderstood/frustrated. This new amazing doctor gave us many suggestions and resources and iPad apps to help us all out. Having the new knowledge that E needs verbal and written step-by-step instructions, we are viewing so many issues in a totally different way, such as using the toilet, getting ready for school and completing homework. This morning we had a new app set up for him that had his morning routine spelled out in words, as well as verbally spoken to him. He was able to cross off each task as he completed it. HE LOVED IT! It was genuinely fun for him. We watched him use the toilet on his own for one of the first times ever.

This new news sheds light on Elijah's social struggles, as well. He does not understand body language or other social cues appropriately, so he struggles when relating to his peers. This causes anxiety, which makes everything else difficult for him. We are hoping that if we can tackle some of Elijah's "learning" challenges in a proactive way, his anxiety will be lessened and his confidence and sleep will improve.

This is a lot of information to absorb and I literally will read the doctor's 18-page report daily until I "get" it all. Dan and I are still in the processing stages, but I wanted to get these initial thoughts out. Thanks for reading this entire post! Phew! :) We would appreciate prayers for proper direction on how to parent/teach our oldest boy. THANK YOU! More to come..


dxeechick said...

i'm crying over here for several reasons! i feel so relieved for you guys to have some answers. i feel scared for what stevie faces in the future. (the similarities between he and elijah are crazy!) and i feel hopeful that someday we might have some answers as well. thank you for sharing! xoxo

Charlie & Lori S. said...

We are soooo happy to read this post! We are blessed to have such amazing medical care in our backyard and E is lucky to have amazing parents advocating for him! Now that the pieces are together, creating the road to success will be much easier. He's such a beautiful boy -- great things are definitely ahead!

Christine said...


I just read an article about NLD on the web. I had never heard of it before but it sounds just like E. They could have been describing him and him alone. Glad you got this diagnosed so early, apparently it often goes undiagnosed and kids just suffer and struggle. So this is sooo great that you know what is going on at this early age. I can't wait to hear about ways to deal with it and how E copes and improves with the changes. He is like a complicated puzzle and it's rewarding to see progress.