Thursday, March 5, 2015
Tuesday, March 3, 2015
Just bad luck!
When you're as analytical as I am, I need to know the "why" to everything. So after the months of guessing games, tests, and finally a multitude of diagnoses, of course I needed to know WHY?! What caused this? Could it have been prevented? Was it something I was exposed to? Was it a medication to ease the discomforts of morning sickness? Is there a way to find out? And so I began asking questions of the doctors that are now caring for my daughter who has hit the rare disease jackpot so to speak. Due to the diagnoses of 2 rare brain abnormalities, naturally I asked the neurologist. He would know best right? His answer? You guessed it! "Just bad luck!". This answer has yet to sit well with me. There has to be a reason other than just bad luck! And so after switching pediatricians, and going over every finite detail of Jaylyn's birth history, diagnosis of neonatal alloimmune thrombocytopenia and the barrage of things it could possibly be responsible for, she wants us to follow up with hematology to see if there may be another reason Jaylyn had suffered a stroke and brain bleed in utero. So we could actually have some answers! Of course I dont want Jaylyn to suffer anymore poking and prodding than necessary but a why could lead to more appropriate treatment and protect my other children when they decide to have their own children. And yes she did agree that my unfortunate exposures to contaminated water and vinyl chloride could very well be the culprit. And then there is the medication I was prescribed for morning sickness. Now there is a huge class action lawsuit for the birth deffects caused by that. So I know deep in my heart that there is a "why" just as I knew deep in my heart something was just not right throughout my entire pregnancy. Just like I knew deep in my heart I had to keep pushing for months for appropriate testing that led to proper diagnoses. So if anyone can learn just 1 thing from our journey is to never give up on finding answers and not all experts are experts on YOUR child.
Monday, February 9, 2015
Its been a while, but Im switching it up for a minute
I originally started this blog for my daughter Jaylyn and her vast complex diagnoses. However, due to being contacted in a negative manner by someone with a Google doctorate on "asburgers", I felt the need to write on my 20 years of experience with ASPERGERS as a mother and as a nurse, which has since been renamed ASD or autism spectrum disorder, also known as pervasive developmental disorder. First off, it does not mean that a person with autism is "retarded" (quoting the ignorantly informed). Quite the contrary, those with autism have higher than average IQ's. When my son was 4, his IQ was tested at 165. Quite the genius with a knack for remembering a lot of information. Of course knowing all the Pokemon and Yu-gi-oh cards ever made may seem silly to some, but that was his thing. Now its movie quotes, music and technology. Of course being on the spectrum and being mainstreamed in a school system that was ill equipped, academics were a challenge, as were some social situations. I wouldnt trade him for anything in this world!
Studies and research on Aspergers shows that despite recent media hype, those with Aspergers do not have violent tendencies, they tend to be victims rather than victimizers. Criminals of violent crimes who happened to have Aspergers also had other psychiatric disorders which do present with "tempers" and violent behavior.
Unlike those diagnosed with ASD that may be lower on the spectrum and tend to be selectively social, my son is social and very well liked. Far from perfect, but a perfectly capable young man. He works hard at his job and at home as the man of the house. From menial chores to being the most amazing big brother to his sister Samaura who is a career high honor roll student, and his baby sister Jaylyn who happens to be special needs (also not "retarded"). When he was younger, I struggled to get Devon to do the simplest things on his own without prompting or reminders. Now he does this for himself and his baby sister as part of his routine. Jaylyn has been a major factor in Devon turning into an amazing young man. From the time I was pregnant, Devon accompanied me on many of my ultrasound appointments, painted my unreachable toes, and took over the chores I could no longer do. Since Jaylyn came home from the hospital, hes fed, dressed, bathed, changed, and tended to her medical needs like a pro. I couldnt ask for a better son and he will make some young lady proud to call him her husband. I consider myself fortunate that Devon has Aspergers. His attention to detail when it comes to his sisters is on point. If only it was that good with remembering to take the trash out lol. So stay classy people. If you have someone in your life on the autism spectrum, embrace their gifts! They are the most amazing people I have ever encountered!
Tuesday, January 20, 2015
Tuesday, January 6, 2015
Monday, January 5, 2015
Faith, Hope, Love, AND REALITY
Along our journey, I have been searching for ways to cope, grieve, and find some happiness. I am pulled in so many directions on a daily basis, that I rarely have the time. I enjoy those little moments when Jaylyn does even the smallest unexpected thing. Its a celebration. Those rare moments when she purposefully uses her right hand are monumental to me. She has surprised me and those "experts" with how well she is doing compared to so many others with the same diagnoses.
With that in mind, it certainly does not take away from the reality of it. The facts. So when I am excitingly updating a family member, and those unfortunate but well meaning words cross their lips, "maybe the Drs are wrong and she will be normal", my head falls heavy into my hands. I feel like you are calling me a liar and Jaylyn a faker. That perhaps I am exaggerating the severity of this. I assure you, I AM NOT. Its great to be hopeful and have faith that "everything will be fine". But the reality and facts cannot go ignored.
And just what prompted me to write this? The other day, after giving Jaylyn her first dose of seizure meds for the day, she gingerly reached for the syringe and explored it with both hands. Hooray! And as quick as I was to celebrate this event, the words that followed out of my typical daughter's mouth broke my heart. It certainly was not intentional, but it made me realize just how hurtful those false hopes AND reality really are. How do you explain such a thing to an 11 year old so that she could possibly understand? And so I remained silent, faked a smile and cried in private like I often do. It took over 24 hours to gain the composure to address just what she had said.
As Jaylyn explored the syringe, Sam had said "maybe she will grow up to be a doctor!". Those words were so full of hope and anticipation, that I was not prepared or willing to crush that dream...at that time. What was running through my mind was "if she grows up", "if she becomes ambulatory", "if she becomes verbal", "if she lives". I try my best not to be a Debbie Downer, but lets face it, when your child is diagnosed with not 1 but 2 brain abnormalities that shorten their lifespan, it does get me down.
The truth is, we do not know just what Jaylyn's future will hold, what she will and wont be capable of. There are many a "what ifs", but I am not prepared for the devastation my other children's false hopes may bring in the future either. So whats a mom to do? After thinking, crying, and talking with Jay, it was yet again time to sit my typical daughter down for a talk and a gentle reality check.
As kindly as I could, I reminded her of the conversation and of her words. She saw that I had tears in my eyes and began crying herself. She knew! I had explained again about Jaylyn's condition and her response was still so full of hope. "I was just hoping Jaylyn would grow up to do something big." I explained that her waking up to see another day is BIG. Every time she smiles is BIG. Her determination and drive and resulting progress is HUGE! And that is what matters. To focus on the day we have with her. To enjoy and celebrate the accomplishments she is making now, because tomorrow is a promise that is so easily broken.
Tuesday, December 23, 2014
Roller Coaster rides arent just for amusement
Being the parent of a special needs child is much like a roller coaster. Often times, youre on this ride alone, unless you have an equally determined partner to help encourage that overly determined child. Even still, this is a ride we are on together....alone. And then there are some who find amusement in derailing that roller coaster, as if the ups and downs are not already enough.
We often hear encouraging words, and those dreaded well meaning but insensitive cliche's. We just chalk it up to someone not really knowing what to say, and there is no ill intent meant. And we try our best not to take offense.
And then of course there are people that do intentionally say cruel and hurtful things. Or at least have ill intent, but we are resilient and try and brush it off. Even with years of experience as a pediatric nurse that works specifically with special needs children, I was far from prepared for my daughter's diagnoses, the care, therapies, adaptive equipment, and countless appointments with specialists.
"But she looks normal". Yes to the untrained, ignorant and judgemental, at first glance she does "look normal". But that's because she doesnt wear her brain outside of her body. She is still a baby and we are learning as we go what her needs will be. She doesnt wear a sign listing all of her medical issues and daily challenges. As her parents, we do not constantly update the world with "woe is me" posts on Facebook for pity or sympathy. She doesnt have a warning alarm letting us know when SUDEP may occur. (SUDEP is an acronym for Sudden Unexpected Death in EPilepsy). We are rejoicing in and sharing as much happiness as we can muster because in the blink of an eye it can be gone. I often find myself speeding home from work in a panic. We take turns losing sleep. We are constantly on edge, waiting for the other shoe to drop. We incorporate physical therapy into every moment of the day to keep her moving and avoid her being in a wheelchair. There is still so much that she should be doing on her own, that we patiently do for her. Sometimes she even has to accompany us on bathroom trips. Her odd neurologically affected sleep pattern makes it hard to plan even the simplest outting. We cant just get up and go when either 1 or both of us is pushing being awake for 24 hours. So if you think we have it easy, think again. If you think having a special needs child is an advantage in any way, or entitles us to benefits of riches beyond our wildest dreams, think again. And by all means, before saying ANYTHING even remotely malicious, remember everyone is fighting a battle you know nothing about. Especially our daughter, who has beaten all odds and exceeded the experts expectations. Together, we will ensure her fullest potential. We will not allow anyone to rain on that parade.
