Wednesday, August 5, 2015

Marching to the beat of a different drummer...my daughter's story

Marching to the beat of a different drummer....my daughter's story

March 26, 2009 at 9:10am
Many of you know that as a parent I have struggled with my daughter and her learning style, personality and her short term memory difficulty. Since she was in kindergarten I have fought to find out just exactly what might be going on with her. She has always "marched to the beat of a different drummer" as her father says. But as a mother, I was certain something was "amiss"  with Ella Kate.

Long story short.....after discovering last year that she has a 70% hearing loss in her right ear she was given an IEP at school to have work modified etc. Still, something was not right. I took her to the TRIAD center at Vanderbilt, which is the premier Autistic Spectrum Disorder diagnosing center in this part of the country. We spent 6 hours in testing; the doctor said to me " I can tell you what she doesn't have, but I am not sure what she does have going on inside her". Again, another vague answer. It appeared she is not autistic, but had several Asperger autistic traits.

Fast forward to Dr. Lanpher a geneticist at Vanderbilt; Dr. Lanpher did extensive DNA testing on Ella Kate in August. We have now discovered that she has a micro-deletion on the short arm of her 16th chromosome. This kind of discovery has only been possible for the last three years. As he told me this week, our technology is ahead of our actual research. Therefore, what we don't know about this sort of DNA mishap is far more than what we do know. We know that this area of the 16th chromosome that is missing is related to learning difficulties and autism spectrum disorders!! Unbelievable!! Like he said, this is not a definitive diagnosis, but it is a start and will help her with getting services at school. Is it connected to the hearing loss? No one knows. Both Greg and I will be checked to see if we too have this sort of deletion. Highly unlikely, but not impossible. So, once again I have another gray area!! But, also one that is wide open for research. Given the fact that this research is so new, she is on the cutting edge of research and hopefully her DNA analysis can be used to further research into this amazing field of genetics.

Moral of the story, I have been persistent for years in attempting to find a way to make learning easier for EK. Nothing has worked, and because I didn't have a medical diagnosis, many services are not available to her. I am a true believer that as parents we know if something is askew in our children. I have now come to believe that the reason I was accepted into the MSN program at Vanderbilt might very well be because God knew that this is a place that we could finally get to the bottom of EK's learning difficulties. Had I not been here, we would not have been able to take it to the next level and actually analyze her DNA. And to think I though I came down here for a man that ended up breaking my heart!!! He doesn't get that much credit anymore!! God knew all along why we were on this difficult journey in Nashville....and to think I thought it was all about me!!!

It looks like we have found Ella Kate's drummer that she has been marching to for so many years.....will it make a difference in her life? In many ways no it won't. But, in many more it will give me the knowledge to continue the fight to get my daughter the very best help she can get. Do I know what her potential is? Do I care if she wants to work at PetSmart (like she told me last week) the rest of her life? I don't know what her potential is, but if it is working at PetSmart as a stock person, retail sales or a a vet then it is my job as a mother to make sure she reaches whatever her potential is.....a journey that I now have a different outlook on than I did 3 days ago! How many of us are walking around this world with a slight deletion or addition to one of our chromosomes? Dr. Lanpher says millions most likely...and they are just "quirky individuals"...

God is good indeed...and I thank God for putting me in a place that can help us give EK the best care and support to rebuild her confidence and self esteem. Whatever her potential is in this world, I am grateful that she is my child...and I was chosen to be her mother..as difficult and oftentimes overwhelming as it is for both us!

Dani

UPDATE:  6 1/2 years later...

What a wild ride the past 6 1/2 years have been for us!  Not long after starting work at my former job for CSFM, I had EK tested for an MTHFR mutation.  And low and behold she has a compound heterozygous MTHFR mutation.  Meaning she has a decreased ability to detox and she is unable to make the methylated form of folic acid and b12.  She was also tested for pylouria and elevated copper, and histamine levels..all three were abnormal.  That added another kink into our already complicated medical history!  Add that to the hormones of a teenager, the resistance to take any supplements at all and a peri-menopausal mom whose hormones are insane, while trying to learn a new career and then transitioning to her own practice...and you have the perfect cocktail for stress and explosive moments!   Her first 2 years of high school were not a pleasant experience for both us.  As we were at our wits end this spring with school and tutoring and the mentioning of quitting school and getting a GED, I learned of Renaissance High School.  A public school that takes kiddos like mine and basically nurtures them back to the self confident young adults they were meant to be.   

Tonight I cried as I sat in the back to school night for Renaissance High School in Franklin TN.  The high school that EK was accepted into after 10 years of struggling with her academics! I sat in silence tonight as I listened to the principle, Dr. Brian Bass explain how every child that is in that school (and there are only 42ish in each grade) was chosen and CHOSE to be there.  This is a school dedicated to educating the kids who "March to the beat of a different drummer" as he stated. Their mission is to  nurture them to not only survive but to THRIVE and find their passion in life.  As stated above, we have had nothing but failure in the school system dealing with EKs processing and learning style.  Tutor after tutor, IEP meeting after IEP meeting, parent/teacher meetings and the list goes on and on.  It wasn't until this Spring that my friend Stuart Tutler told me about Renaissance.  I sat tonight looking at the quirky, clearly uniquely dressed, artistic teenagers wondering how many of them had similar experiences as EK through the years.  I wondered how many of the parents there had cried, not understood, yelled, said harsh words to their kids during terribly high times of stress. I wondered how many kids wanted to just disappear and not be noticed in class and in life, how many shut down daily in classes they didn't understand.  I wondered how many broken families were sitting there tonight with me praying that this school and their dedication to teaching out of the box, nurturing our kids self esteem back to health is the answered prayer we had all been praying for?  EK and I have a second chance to heal and find the passion in learning that she has never had. What a gift from God that out of only 4-5 openings in the Junior class and 100's that applied...that sweet kid of mine was accepted!  

For the first time in 11 years of school, I am looking forward to seeing what this year brings for not only EK but for me as a mom...a single mother who has fought nonstop for this kid year after year in the school system.  I know her classes will be difficult, but her confidence will be preserved and self esteem nurtured back to health in an environment that is dedicated to making sure EVERY CHILD succeeds.  I drove home tonight listening to a kid talk nonstop about the kids in her new school.  The school is small, but the demand is HUGE!  Evident by the hundreds of kids that did not get in, that are on the wait list.  I cried tonight as I thought about the parents that were desperate to find a better way for their babes, a safe harbor in a broken educational system that is not equipped to educated the ones that are "marching to the beat of a different drummer".  I am humbled that my babe is given a second chance to spread her wings and find her passion, a love of learning and chance to thrive in an environment where everyone is a little quirky!  The English teacher told us that all the teacher there are a little quirky and relate to our kids quirkiness!  

She still has an MTHFR mutation, microdeletion of the short arm of the 16th chromosome, hearing loss (that she refuses to wear her hearing aid for :)), pylouria etc...won't take her supplements (even though I screamed out last week that "people travel from all over to come see me for help EK..why won't you listen to me and take your supplements"?....And I am closer to menopause than I was yesterday (meaning my fuse is short, and my sheets get changed several times a week due to catching on fire at night) and hormones are insane!!  BUT MY BABY HAS A SECOND CHANCE...AND THAT MAKES ME SMILE!  

17 comments:

  1. Dani! I am amazed at how much I unfortunately have in common with EK down to the deletion on chromosome 16! I am curious what you know about that? I was told it wasn't anything to worry about by genetics! I know you are busy as a bee, but if you get a chance and have info on it, email me at theseyers@hotmail.com Heather

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