It didn't take much for me to accept the invitation to attend the Neurofibromatosis Symposium that was held here in Colorado, at the Children's Hospital in Aurora. After the one in Spokane a year ago, I had high hopes this one would be much better.
<2009 NF Symposium>
Walking in to the Symposium, I re-imagined myself as someone who knew nothing about Neurofibromatosis. I wanted to hear what the speakers had to say with a fresh and open perspective.
The first speaker, Dr. Tena Rosser discussed tumors; specifically Plexiform Neurofibromas. She was interesting and her pictures added concrete reality to the topic. While none of my family members suffer from plexiforms, I found the topic to be informative, but a bit overwhelming.
The topic that got my attention was about learning challenges and social skills in NF children. I took notes and paid close attention, seeing that I have 3 NF1 kids, who have very different learning challenges.
Dr. Jennifer Janusz is a children's Neuropsychologist, who has specific knowledge of children with NF. Her topic pointed out that MOST kids with NF do not have one specific type of learning challenge but may have a broad scope of disorders, what she called a global deficit.
With my own NF1 children, all three have IEP's (Individual Education Plan). While all of my NF1 children do have ADD/ADHD in common, their learning plans are quite different.
People with NF seem to have "Global Deficits" and do not fit into a specific learning disability profile....which explains why Bailey had gone so long without qualifying for an IEP at school. It wasn't until she had gone through Neuropsychotherapy, that she would finally qualify for extra help.
To parents with NF children...it is extremely important to have your child tested by a Neuropsychotherapist...either before they start school, or soon after. These doctors are trained to pinpoint your child's specific strengths and weaknesses.
Some things that help children who are struggling in school:
*Breaking long-term projects into sub tasks
*Verbalizing your Plans
*Goals (step by step...instead on a long term goal, make small attainable ones)
*Create planning sheets, or check off sheets for daily tasks
These these have helped with my kids, especially with Braden. He has trouble completing a list of goals, so instead, we break it down to 1 or 2 small ones. He feel accomplishment and pride with this process.
We had a break and I checked on Bailey, who slipped out of the conference after the plexiform discussion. She was in the room next door, playing with other children. She seemed to be having a good time and even connected with Dexter, the son of a woman I am friends with on Facebook.
I filled my cup up with orange juice and sat down to get ready for the next speaker. I looked at the schedule and saw the topic was on eye care. This topic also interested me, mostly because of my soon to be eight-year-old daughter Rachel.
Rachel has had issues with her eyes for the last 3 years. Her first MRI was performed in 2008 and we learned that she had narrowing of the optic pathways, under developed ventricles and a brain mass.
Dr. Mithra Gonzalez recommended every child with Neurofibromatosis be followed by an opthamologist as well as an optometrist. The importance of this is because opthamologists are specifically trained to watch for abnormalities of the eyes during medical school, whereas the requirements to be an optometrist are not as comprehensive.
Dr. Gonzalez, while amazingly knowledgeable, used far too much medical jargon for my tastes. Personally, I found myself having a hard time following him and lost my focus. His clinical style didn't lend itself to creating much hope for the audience and the mood in the room afterwards was somewhat depressing. I know many families who are dealing with specific eye issues, and the last thing they need to hear was that there was no hope in saving their child's vision.
Dealing with NF is a two-sided challenge. We want the truth, but I believe we also need encouragement. Doctors often lose themselves in the information, which can blind them to the humanity the information affects. I was glad for this talk to be over, and I won't let the medical truths get me down.
The last thing on the schedule was to hear from the adult panel. Four people sat in front of the room and voiced their stories about being diagnosed with, and living with, Neurofibromatosis. As each of them talked about how they do not let NF limit them - Teachers, College Graduates, Mentors - I smiled. THIS is what the NF community needs to see. People Living and Thriving with Neurofibromatosis. This is what I strive to show my children, my readers, MYSELF, everyday.
What are YOU showing the world?