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Tuesday, June 18, 2013

A message to those against Stem cell and genetic medicine for humans

I have a right to choose my life and so do my children

As the mother of two special needs/autistic children who writes for a newspaper, an online website: Dandelionmomsdotcom Special Needs Parenting Section  and her own blog - I feel the public needs to understand that when our children are initially diagnosed, it doesn't stop there for every family.  At least not for our family.  Genetic issues and more diagnosis just keep coming as my children age.  Today I'm dealing with a very upsetting situation with one of my children.  I don't have enough information to know the outcome yet, nor am I ready to speak about the details.  However, I can tell you this - whatever diagnosis the Dr. decides upon, I already know from the symptoms it's genetically based.  And I already know it will be a lifelong, incurable condition.

Readers of this blog need to know that it will vary from my writings from the other two publications.  I'm going to be less politically correct, not every story will have a happy ending and sometimes I'm going to be downright snarky and probably a Righteous Bitch.  And I dare the "Neurotypical" who has the perfect suburban house with the white picket fence, the honor roll student who plays football, runs track and baseball in the summer to tell me I don't have that right.

I have a request for the public and lawmakers.  If you oppose Stem Cell research or genetic medicine for humans - please be a guest at my home for two weeks.  I'll clear out a spare bedroom for you and prepare you gluten/oat/corn/preservative/food dye free foods while you watch me struggle to manage to pay for medications or choose groceries instead this week, juggle phone calls with multiple specialists/school administrators/pharmacies and my personal favorite - the collection agencies.  My estranged husband works full-time for the Federal Government.  I worked full-time also until about two years ago when my daughter was diagnosed with LHON (Lebers Hereditary Optic Neuropathy and we were told she would go blind within a year.  We choose the highest option of health insurance plan we were offered and with two special needs children and their medical needs are looking at bankruptcy as the only solution.  LHON is a mitochondrial disease which means my daughter has a 98% chance of passing along a gene that causes permanent incurable blindness to her children or the decision to never know motherhood at all.  The same genetics apply to the convulsions, the migraines with aura that cause her to go blind for 2-8 hours at a time, the food intolerances that cause gastrointestinal issues and a variety of rashes/breakouts and dandruff.  While I was never the perfect wife, none the less I am now another statistic in the estimated 60-90% divorce rate of families with special needs children.

You can also observe me in the role of both medical and psychiatric evaluator as I never know what the day will bring.  Will their bipolarism be rapidly cycling and it will be a non-productive day just trying to deal with the dual personalities?  Will my autistic son who cannot perceive pain like you and I get aggressive and violent because he developed yet another ear infection despite my campaigning with multiple Drs. to put in ear tubes? He's currently ten years old.  This is the first year he's knocked me down with his aggression.  I knew the time was coming.  What will I do when he is 14 and breaks my arm, which will be easy since I suffer osteopenia?  Should I have to suffer institutionalizing my only son because some in our world don't believe in stem cell and genetic medicine?  Autism, ADHD, bipolarism and LHON are all rooted in our genetics.  Stop forcing us to shove 50 pills down our throats a day and let us decide on an individual basis if we wish for a different life. Perhaps I'll spend an hour on the phone with the psychiatrist debating the pros and cons of different mood stabilizers and anti-psychotics.  Then there are the endless trips to the lab for bloodwork to ensure the 101 daily medications aren't affecting liver functions or thyroid levels.  My daughter's bipolarism is so strong it dominates her life.  She is unable to cope and and sits on the floor banging her head and pulling her hair without lithium.  But again, there was a price to pay.  Lithium has a well known side-effect of causing thyroid issues.  So my daughter is sentenced to a life of both daily lithium and thyroid medicine.

This isn't a post about myself as a mother wallowing in self-pity.  My children will do things those "neurotypical" mall-rats & prom queens/kings will never accomplish.  My daughter independently started studying Latin at age 7.  She's attending every writing camp the local literary center offers and has filled pages with her poetry.  Her latest painting was quite remarkable, although I admit the obvious bias.  My Asperger son can look at a structure like a bridge or framing and tell you how it was built and why certain materials were used.  Sometimes he finds flaws and comments the structure will never last. His interest in robotics is remarkable.  He begs me daily for the latest Lego Mindstorms Version and the various add-on sensors - not an option on a budget choosing between medicine or groceries.  I KNOW my children are destined to accomplish greatness in life. 

But at what cost?  We write articles and throw pretty little signs around Facebook about how Einstein, Jefferson, Newton and so many more were probably on the autism spectrum from what we know of their lives through history.  Yet didn't every one of them suffer in some way?  Genius comes at a cost.  And not all of us wish to pay it.  Furthermore, the few names that get tossed around are just a fraction of a percent of the population of people on Earth who suffer from autism, adhd, bipolar, depression, psychosis, etc.  Very few of those who live a life carrying these burdens ever  luck upon greatness in the history books.

Am I actually calling for the genetic recreation of the human race?  Yes.  For any other reasons I would never support this radical idea.  But the bipolarism I suffer along with both of my children is not due to a lack of lithium in our bodies.  Yet we must shove those pills, along with many others down our throats our entire lives and endure the ups and downs of major depression and a 20% suicide rate.  The Mighty Drug War the U.S. Government has been fighting for more years than we can count and spent billions of dollars accomplishing nothing?  The majority of those drug users are self-medicating some condition, some pain in their life like depression, bipolar, psychosis, etc.  Stop wasting billions of our tax dollars and HELP THOSE PEOPLE!

I understand my article is proposing a radical approach to a large segment of the human population.  But if society does not allow those of us who suffer every day of our lives with these intolerable conditions (and many of us have multiple diagnosis) - then it is YOU who are the true monsters.  Society must allow each human individual the right to rid themselves of the demons rooted in their genetics so that the playing board of life is level.  If society does not, you have sentenced us to a life of low-paying jobs, inability to keep jobs, high divorce and domestic violence rates, higher suicide rates and more.  Think long and hard before you decide that millions should be sentenced to a life of poverty and a servant sub-race.

As a mother and a human being, I demand that my children and their children be given an equal chance to create a life of happiness for themselves.  Anything less is not acceptable.