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Tuesday, August 20, 2013

Bad Contracts: Rushing into reform simply to be able to say "Hey, we passed Healthcare reform"


Bad contracts: A look at Obamacare
By Jodi Hobbs

Mother and home educator/Special Needs/Autism

The first car I purchased was a 1988 five speed Chevette. I loved that car. I still have fond memories of driving a manual transmission with great gas mileage. The only problem with this description is the fact that Chevy stopped production of Chevettes in model year 1987, according to multiple sources. And I can assure you that I spent the first two weeks trying to get it into fifth gear and never succeeded. Probably due to the fact that it was only made in a four speed manual transmission or a three speed automatic. This is the consequence of nineteen year old girls with no automotive knowledge and too much pride attempting to negotiate a verbal car contract with their shift supervisor, a gentleman I hope to this day is ashamed of himself. I like to tell myself that I learned an important lesson at an early age for the $800 I paid for that car. Then I look back 18 months ago when I signed my very first IEP, in essence a contract between a family and the school, detailing the rights and accommodations of my autistic son. I sat in meeting after meeting and naively let myself be told that I didn't need pages of detailed, “fussy” information about each tiny accommodation and all would be best if I allowed the school to handle the fine print. I don't know how that same 19 year old girl ended up in that IEP meeting. I signed off on that first contract and have spent hundreds of hours since trying to fix the errors of my stupidity. 

In October of 2013, The Patient Protection and Affordable Care Act (2010) is scheduled to go into affect – barring a major political upset or lack of funding by Congress. Yes, “Obamacare” as it's known by it's many critics, even successfully navigated The U.S. Supreme Court (2012). Foreseeing the critics looming in the shadows, if you want “expert” legal or health-care related analysis of this new federal program, you can find it debated on nearly any source of media daily. I am a special needs mother and advocate, by love not necessarily by choice, and this column doesn't claim to offer anything else. For those of you still with me, this law simply is not ready to go into action. For an endless number of reasons, not limited to: no one can agree how many pages of regulations exist. Although the original bill that President Obama signed into law is slightly over 900 pages (and full of questionable clauses, which I address in just a moment) the White House then issued further details and endless pages of terms and conditions. Politicians have gone to social media sending out photos and quips about how many thousands of pages still yet had to print. Reputable media sources quoted page counts from 15,000 to 33,000. No one has had time to read this law or process how it's going to be enacted. New committees and agencies were created. Call me a cynic, but none of those actions are historically successful for the U.S. Government when new law is concerned.

Very well, but does any of this involve special needs or autism families? It has to by definition. We are speaking about the largest legal and structural overhaul of the American health system in the last century. And therein lies the problem. No one has had time to agree on the original 900 pages of the bill. Thirteen State Attorney Generals tried to sue the Federal Government to stop this from becoming law. Lawmakers in South Carolina have tried unsuccessfully to make implementing Obamacare illegal in the state. Adding countless thousands of pages in addition is simply madness. There are bound to be policies that contradict or impose unreasonable penalties on seeking reasonable medical care.

For example, look at one clause in the original bill signed by President Obama that concerns me:



SEC. 3502. ESTABLISHING COMMUNITY HEALTH TEAMS TO SUPPORT THE PATIENT-CENTERED MEDICAL HOME:



(J) establish a coordinated system of early identification and referral for children at risk for developmental or behavioral problems such as through the use of infolines, health information technology, or other means as determined by the Secretary;

Is it just me or does anyone else notice the B-R-O-A-D vagueness and general lack of detail about how “Community Support Teams” (i.e. Federal agents) will be identifying “at risk” children? Or what will be done with the information? Does this mean if I have a preemie that my baby will go on a registry with the federal government to be 'watched'? Or if my child has low Apgar scores that a federally-funded nurse will show up at my door to inspect my child? Where will this data be kept? For how long? Who will have access to it and for what reasons? The questions are endless.

Now, is there truly likely to be an iron nurse at my front door to inspect my two special needs children flanked by federal troops bearing arms? Doubtful, at best. But those in the media, health-care, legal and special needs/autism communities who have watched this disaster unfold have some well-founded fears and concerns. This is America, after all. We like our Bill of Rights, our Right to Bear Arms and any other piece of the constitution we can work in the conversation. We also have the right to have clear, understandable laws that spell out the relationship between the citizen and our “voluntary” government services.

Jodi Hobbs is a soon to be single mother and home educator to two special needs/autistic children who teach her everyday that the legendary box never even existed, but the possibilities within the minds of our children can transform the world. She is a fierce believer in mental health access and treatment being basic human rights. She blogs at www.throughthehardtimesandthegood.blogspot.com and is a regular contributor to www.Dandelionmoms.com. Her Facebook page can be found at I did NOT sign up for this Special Needs Parenting and you may follow her on Twitter @JHobbsSaunders. Jodi welcomes reader opinions and comments at snp.ididnotsignupforthis@gmail.com


Sunday, August 4, 2013

Unexpected Strength during rough days

 
 
Unexpected strength during rough days
 
 
I apologize for my lack of posts.  The wrath of bad luck has struck this house in July 2013 like you wouldn't believe.  The first two weeks we had the flu and my daughter (Bipolar Girl) had some light coughing.  We were basically bed-bound, but my son (Asperger Boy) didn't get the flu and brought us drinks, food, etc.  Listen carefully to the details in this post.  This isn't really about how terrible July was (ok, it is) - but more importantly it's about how my children pulled through and made a bad situation work knowing I was horribly sick and my estranged husband was in Washington, DC and was of absolutely no help.
 
The middle of July, we saw the CNP at our Ped's practice b/c our regular Pediatrician was booked solid.  She asked me about Bipolar Girl's asthma because I was reporting so much coughing that I couldn't control.  I stated Bipolar Girl didn't have an asthma dx, the meds she was seeing on her chart were from having croup during the winter and I had asked the staff numerous times to take them off.  She arranged a breathing test two hours later (it gave me time to take my children to lunch, I had Asperger Boy with me and regular meals are highly important).  We went back and I didn't need the test results.  I watched her blow into the tube and saw the graph results on the screen.  She could barely breathe to be quite frank.  We started on QVar 2x's a day and albuterol 3x's a day.  If you've ever given asthma treatments, you know they take all day and you basically can't get anything done.  At least this virgin Asthma momma couldn't.  The treatments did nothing.  While I was there, I pointed out her red throat and asked for prednisone.   The CNP looked at her throat and told there was NO  need for prednisone.  Uh-huh.  Lady, I've been doing this a lot longer than you.  My daughter was coughing day and night.  Her rapid strep had come back negative for weeks, but I wasn't convinced she didn't need antibiotics as well.
 
My daughter taking an albuterol treatment at home July 2013
, despite many daily treatments and care her asthma attacks continued and frightened me.
 
 
In the meantime, Bipolar Girl had planted beans from the kitchen in plastic cups and put them in the window.  They sprouted and she was so proud.  Until the dogs knocked them down when we were gone on an errand.  I am SO proud of Asperger Boy. He looked at the mess, looked at me and told me he'd take care of it.  He did an awesome job of cleaning up all the soil and even replanted the seedling in a new cup.  What happened to my children and who are these kids?
 

I'm going to warn you - this is a post with ALOT of pictures.  My children both suffered and accomplished a great deal this month.  I feel images really convey the story and add to the understanding.  I'd love your feedback on this - so please feel free to comment or email me!
 
So, back to Asperger Boy - he saw his sister's bean sprouts all over the floor before she did.  He told me to leave it alone and this is how he handled it:
 
First, he cleaned it up with a towel.
Then he did his best to save the plant and dirt.
Finally, he went to the front porch and added new potting soil.  So far the plant has lived!  So proud of my boy!
 
During all this time, Asperger Boy developed migraines with auras he can't describe or understand.  We were assigned a horrible Neurologist at Nationwide Children's Hospital, even though I specifically told the referring Neuro Opthamologist that I wanted him to see the same Neurologist my Bipolar Girl sees for her migraines.  I was truly hoping that my son would be spared this genetic curse.  Migraines run heavily in both my family and my estranged husband's family.  He had made it to age 10 and I was truly praying that we had dodged the curse.  He is confused and becomes almost nonverbal.  It's very hard for him to describe what's happening during the migraine and the Neurologist was absolutely worthless.  She stated that if he couldn't tell her what was happening she couldn't diagnose him.  I'm sorry but I truly believe that #NationwideChildrensHospital needs some physician training on diagnosing and empathy for autistic children.  I personally volunteer to teach the class.  You can reach me at snp.ididnotsignupforthis(at)gmail.com. Oh and by the way, I fired her.  I think the staff was in shock - but I cancelled our next appointment and made it clear we were done with that neurologist.  I left a message for my daughter's neurologist to call me regarding my son.  I try to get the same doctor for both children because I believe seeing family connections and genetic similarities is very important to proper care and diagnosis.
 
So back to Bipolar Girl, another week passed and she couldn't walk from her bedroom to the kitchen without multiple asthma attacks.  I took her back to the Ped office and this time got our regular Pediatrician.  He slapped my hands and reprimanded me for allowing her to get in this condition.  He immediately put her on the highest dose of Prednisone she's ever had, put her on the nebulizer (which I agreed with she wasn't using the inhaler well) and kept he Qvar treatments.  Now to travel, I'm looking for a nebulizer that will use our car outlet.  Special Needs Moms truly do more research in so many areas we deserve college credit!
 
In the meantime, Asperger Boy begged for some sensory help.  I was on a limited budget you wouldn't believe - but this was what I managed.  He was in heaven!
 
He loves water!  It's the best sensory relief for him!
 
Love that smile!
 
One of my favorite pictures!
Our month included blood draws.  As you can see Asperger Girl was not happy.

This is an example of Asperger Boy's PANDAS Syndrome. Fact Sheet on PANDAS Syndrome
He has an obsession with cleaning, especially vacuum cleaners.
 

Asperger Boy is a much better camper for blood draws.

I love to see them relaxed and having fun.  It's been such a rough month.
 
 
We took Butter (golden lab rescued from a shelter, service-dog-in-training #1) to the library today for an OT evaluation for Bipolar Girl.  She was initially uncooperative, but being the player she is she came up with her own deal.  She agreed to cooperate for a frozen lemonade from Wendy's afterwards.  I caved because I just went to the clinic and have a horrible sinus infection, feel miserable and it seemed liked a small reward for good behavior.  I had to stay in the room to handle Butter - who was absolutely wonderful.  She laid down beside Bipolar Girl's chair without getting in the way and offered comfort when she got stressed.  I had to take Asperger Boy, as I had no childcare, and when he was bored with the iPad - he rolled under the table and Butter joined him keeping him loved and happy (and quiet!).  That dog is a blessing from heaven!
 
Bipolar Girl, Butter (service-dog-in-training) and Asperger Boy
 
There are other changes going on in our life that I can't write about quite yet.  But July was a month of bad luck and a lot of sickness.  My children pulled through in amazing ways.  And although we have a lot of work to do, I was proud of the way they took initiative and surprised me with their strengths and can-do attitude.  This is the very life skills I have been preaching for years and thought they fell in deaf ears.  I am amazed and blessed to find out my children can persevere in a stressful situation.
 
This blog post was an attempt to document a rough yet often normal month in a special needs family.  I also felt that additional pictures would help the reader see the story in a more personal way.  Most importantly, my children are pulling through in amazing ways.  I cannot express my pride.
 
I hope you enjoy this post and comment, email and share this post.  I wish you a wonderful month with your special needs children!
 
Jodi Hobbs is a single mother and home educator to two special needs/autistic children who teach her everyday that the legendary box never even existed, but the possibilities within the minds of our children can transform the world.  She is a fierce believer in mental health access and treatment being basic human rights. She blogs at www.throughthehardtimesandthegood.blogspot.com and is a regular contributor to Dandelionmoms.com.  Her work may be found bimonthly in The Gallipolis Tribune (www.mydailytribune.com).  Her Facebook page can be found at https://www.facebook.com/pages/I-did-NOT-sign-up-for-this-Special-Needs-Parenting/226416517475272?ref=hl and you may follow her on Twitter @JHobbsSaunders.  Jodi welcomes reader opinions and comments at snp.ididnotsignupforthis@gmail.com
 


Monday, July 1, 2013

The anxiety of genetics that my son can't verbalize

What happens when your verbal Asperger child is no longer verbal?

Today my son, affectionately dubbed "Asperger Boy" (don't hate mail me people.  He knows I use this term online and he's fine with it.  If *HE'S* fine with it - then you can be too.  Find a way.) had his fourth "vision incident" in two weeks.  By "vision incident" I mean he indicated he couldn't see the same and while in past incidents he has used the actual term 'cloudy vision', today he couldn't even verbalize that.  It started with him going from having an excellent morning and upbeat spirits to being angry and hostile within minutes of each other.  Since, while he is bipolar, he's never been what I would consider rapidly-cycling bipolar - this didn't make a lot of sense to me until I started to think about what other factors could be upsetting him.  I ruled out hunger.  I'm never going to know about pain, he told me repeatedly he just didn't know if anything hurt.
 
 
I took him to the Pediatrician for the first vision incident and because they were basically clueless, I took him straight to the Children's Hospital ER following that.  I hate our Children's Hospital and with good reason.  My autistic son is describing cloudy vision and during this vision incident only he stated there was pain around his eye.  They didn't have access to an ultrasound machine to check his optic nerve, they didn't check the pressure in his eye, nothing.  As my cynical mother used to say "Hell of a place to start a hospital.  Sounds like people could use some decent medical care here."
 
The other three times my son was very frustrated and upset, but repeatedly answered the same way to my questions about pain.  He just didn't know.  We have the same issue with his severe ear infections.  He can't feel the pain and often his eardrum is about to rupture by the time I get him to the Pediatrician.
 
There's been a lot of emotion in our household since these vision incidents began.  But if you didn't know our family history or how to read my son's inability to voice pain and some emotions, you'd miss so much.  Asperger Boy has been undecided on the decision of getting a service dog for himself.  In part, in my opinion, due to his nervous nature and his fear he will not know how to understand the dog and it's nonverbal body language.  That completely changed once his vision began to have problems.  He's campaigned adamantly for not only a service dog, but the black lab we rescued from a shelter and brought home with the intent of seeing who she bonded with best before training to certify her as a service dog.  I believe he feels comfortable with her and needs that familiarity, especially in such a frightening time for him.
 
My almost nine year old daughter was diagnosed about 1.5 years ago with Leber's Hereditary Optic Neuropathy (LHON).  It's a degenerative disease of the optic nerve that is both genetic and mitochondrial in nature.  It affects more males than females and usually begins with vision loss in one eye, affecting the other eye on average in 1-4 months later.  Most patients are blind within a year.  Our entire immediate family, including my estranged husband, carry the gene.
 
It was difficult to talk to my son today.  I wanted him to know that he could talk to me, but didn't want to upset him by continually bringing up upsetting topics.  I kept it brief and assured him I was here for him.  He was able to tell me that the appointment tomorrow with the Neuro Opthamologist  who diagnosed my daughter with LHON and tested the entire family for the gene had him nervous.  He couldn't elaborate on exactly why he was nervous, but that was enough.
 
Sometimes special needs/autistic parents are the only individuals in a child's life who know them well enough to translate nonverbal communication or the inability to speak at all.  My son is scared.  He's not alone.  I'm terrified.  I'm terrified my son will at best end up like his sister who lost enough vision to be considered visually impaired.  I'm terrified at worst he'll be legally blind from a gene I gave him.
 
 
The professionals in the autism world put our children in two clear-cut categories:  verbal or nonverbal.  I would disagree.  My son can speak volumes about engineering, robotics and building.  He can go on for hours about building materials affecting the stability of a structure and how concrete must be correctly mixed and allow to cure.  But right now he's paralyzed by the fear he will spend the rest of his life unable to see.  And he doesn't have any words for this.  The vision episodes he's experiencing are so complex and overwhelming that he can't describe them to anyone, not even his own mother.
 
Today he was trying to read a novel and I could tell he was struggling.  I asked him again if he could tell me anything about what he could or couldn't see.  He pointed to a white paper plate on the table and said half of his vision was like that.  Then he pointed to the top of the brown kitchen nook table and said the other half was normal and in color like that.  I gazed at that paper plate and my heart broke over and over.
 
Does this mean my son automatically is doomed to LHON and blindness?  No.  It's possible his symptoms may be some type of optic or retinal migraine.  We had an emergency Neurology appointment (again, with the local Children's Hospital that I have very little use for) and the neurologist was unable to tell us much of anything.  She said with his inability to describe the episodes she couldn't diagnosis him at all.  I can't tell you how disgusted I am by a medical world unable to help those who may be brilliant in their own way, but perhaps cannot give the Gettysburg Address.
 
Today we began bonding the lab, Tinkerbelle, with my son even more.  He began short and positive obedience lessons with her and rewarded her with dog treats often.  I encouraged him to have her sleep in his room to further cement the bond as much as possible.  Tomorrow?  Tomorrow I'm going to lie.  I'm going to tell my son that everything will be alright.  I'm going to hug him (as long as he's open to physical contact) and tell him the Dr. probably won't find anything wrong at all.  Because my son deserves a few more days of peace of mind.  There's a good chance the Dr. won't find evidence of LHON.  But a child simply doesn't lose vision in one eye on multiple occasions without any reason at all.  Whatever your beliefs, please pray or keep my son in your thoughts tomorrow.  A child normally asleep right at 8pm, it's 10:20PM and he's wide awake with fear. 
 
I will not allow my children to become haunted their entire lives by the fear of what their genetics may hold next.  Please join me in contacting your state and national representatives to demand that our precious tax dollars stop going to foreign countries who plot against us or be spent on a drug war that has raged for decades with no end in sight.
 
Demand that our hard earned tax dollars be spent on allowing our children to live healthy, fulfilling lives free of fear and anxiety.  My son may not be able to express his fear - but I can look into his beautiful blue eyes and see that he fears the future.  No child should live in that nightmare.  I intend on making it a mission to speak to lawmakers and anyone else who will listen that our nation puts our children and their health first.  Help me remind this nation that our children are our future.

Please support research and a cure for LHON

 

Resources:

 
 
 
 
 

What did my daughter use to treat her LHON?

As prescribed by her Neuro Opthamologist and monitored by blood tests, she was put on high levels of several vitamins and Idebenone (synthetic CO Q10) .
 

What did you mean by "mitochondrial disease" and are there others?

 
 
 

Types of migraines:

 
 
 
 
 
 
 

 

 

 

 
 
 


Friday, June 28, 2013

Nothing is ever simple. Not even ear infections.

The unfairness of special needs life

 
Bipolar Girl May 2013
 
For the record, this is not an intellectually-based, change the world type of blog entry.  But that doesn't make it any less important.  This is a blog entry about today.  About Friday the 28th, which happens to be six days before the ninth birthday of a beautiful child that I prayed for before she was even conceived.  When I took my daughter, Bipolar Girl (bipolar/LHON/ADD/pediatric migraines with aura/etc) to the Pediatrician's office because she had been on antibiotics (oral and ear drops) for a week and was still experiencing ear pain.  Our regular pediatrician was busy, so I accepted an appointment with the Certified Nurse Practitioner (CNP). 
 
I think it's important to note, as I cruise social media and am dazzled by all the highly polished blog entries written like doctoral thesis that those are important and absolutely belong in the world of advocacy for special needs.  The parents, caregivers and educators in the special needs world are well-educated and have a passion for this life that few other fields can claim.  I am proud to be represented by well researched, inspiring articles and blog entries that showcase again and again both the beauty and the curse of parenting and educating special needs and autistic children.
 
But this isn't one of them.  Today, I am not a polished writer who has a social theory about autism or special needs that will change the world.  Today, I'm the mother of a medically underweight almost nine year old who had a visit at the Pediatrician's office that neither one of us will ever forget.  The CNP and I talked about her ear infection symptoms and how she had been on strong antibiotics for a week.  I expressed my concern about the infection seemingly not clearing up, her pain, her nausea from the antibiotics and how I thought it might be moving to her chest due to a lot of coughing at night.  My daughter was examined and her ear infection is being resistant to the antibiotics.
 
Then the CNP sat down and asked me about the coughing - did it happen only at night, what did it sound like, etc.  When I inquired about the line of questioning, she explained that my daughter's chest sounded perfectly clear.  She brought up my daughter's online medicine list and said that perhaps we needed to schedule an asthma check-up to make sure her symptoms were controlled.  I corrected her and explained the steroid medications she was seeing were from the croup this past winter and I had repeatedly asked the staff to remove them from the active list.
 
"So your daughter isn't diagnosed with asthma?", the Nurse Practitioner inquired.
 
"No.  She never has been.  Her brother has an asthma diagnosis, but I never saw those symptoms in her." I explained.
 
The CNP explained that my daughter's strong allergies, a sibling with asthma, the coughing so strong it was waking her at night and more indicated the need for asthma testing.  I agreed, on one condition.  We had to be worked into today's schedule.  I knew that between my anxiety and my daughter's constant worrying about developing more health issues that we couldn't take waiting until next week.  The CNP recognized the strong anxiety in both of us and worked with the staff to allow me time to take the children for lunch and bring them back to test my daughter.  My daughter is emotionally and physically challenged, but she's a very smart young lady.  She immediately began questioning the testing process, what treatment would be like, would her activities be restricted.  I played it off as a small chance that she would even test positive for asthma and calmed her.  Inside, I was furious with myself.  I had had the flu for the past week and hadn't woken for most of her "coughing fits".  Nighttime coughing that wakes the child is a huge indicator of asthma and I had failed my child.
 
 
 
We returned after a stressful lunch and immediately began testing.  I knew my daughter's tests results before the CNP gave them to us.  My daughter could barely blow into the tube both before and after being administered the albuterol to open up her lungs.  We moved from the testing room into an exam room and I tried to quickly work out how to handle my daughter.  The CNP entered the room and Bipolar Girl immediately launched into demanding questions about her results.  I begged the CNP's forgiveness for what I was about to say, then asked her to be careful how we discussed these results.  I explained my daughter was intelligent and I would not withhold information from her - but she needed to digest this information slowly and calmly in order to prevent a mental health crisis.
 
I found the CNP to be a very kind, educated woman today who took the time to explain the symptoms and results to me today to any extent I wished to know.  Before we left, she informed me she had checked with the office manager and our service-dog-in-training will be allowed to accompany my daughter on any future visits that I feel the dog is necessary to stabilize my daughter.  That was when I started crying.  I haven't quite quit yet.
 
My daughter is afraid.  She's afraid she won't be able to breath, afraid she won't be able to run around in the backyard or go hiking as we have in past years.
 
I'm afraid.  I'm afraid that the diagnosis will never stop.  I'm afraid as my children age that they will be burdened, both mentally and physically, by more and more disease and depression.  I'm afraid for my children as this divorce progresses.  I called my estranged husband and explained both the diagnosis and how upset my daughter was to him.  He choose to go play cards tonight rather than come comfort her.
 
Sometimes, we need stories from the special needs/autistic world that are raw, painful and powerful.  Writers like myself should feel comfortable allowing the world to know that we spent the day holding our child, praying for the best and angry at a world that has been working on medicine for thousands of years but hasn't healed our children yet.  For all the wonders in this world, today my daughter can't breath.  And that is simply unacceptable.
 

Resources:


 
 
 
 


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.


Resources
 
 
 
 
 
 
 
 
 
 


Friday, June 14, 2013

A beautiful bipolar pixie who breaks my heart, every single day


 
 

I had to begin somewhere....

and she said the most amazing words.

 
 "Mom, can you look at the braille work I've done and tell me what you use to get it to raise?  I heard the most amazing phrase on Numb3rs! 'Zombie with a gun.  Waiting for words that will never come.'"  This is what my 8yr old Bipolar/LHON/ADD/Anxiety/Possible Aspergers but no one can ever agree/Pediatric Migraines with aura daughter (Bipolar Girl) greets me with as she bounces into my room. She hands me index cards that she has carefully written letters on and above them a very painstakingly copied series of braille dots from a list she printed off the internet.  An interesting set of behaviors from one 8 year old child, I know. I explained to her that to make it actual braille we would need an expensive braille labeler.  Last week I walked past her doing a word find with the word HIPPOPOTAMUS.  She had written down 'mus', as a word.  I tried correcting her and she informed me it was Latin for mouse.  I looked it up.  She's right.  As to her fascination with "Numb3rs", she gets very OCD about t.v. and books.  She insists on science-fiction or crime-dramas that feature extremely smart male figures, like Charlie the math prodigy in "Numb3rs" or Dr. Rush in "Stargate Universe".  Then she talks about them incessantly and drives all of us in the house stark-raving mad (most of us are already there, but still!). 
 
Bipolar Girl has Leber's Hereditary Optic Neuropathy (LHON).  She's lost enough of her sight to be classified visually impaired.   We're currently training one service-dog-in-training that we rescued from the local shelter, Tinkerbelle, a black lab mix sweeter than molasses.  The children and myself all qualify for a service animal.  So it's uncertain who this point who will benefit most from Tinkerbelle and who will benefit from near future dog/puppy choices.  We wish to train them very close together.  I also believe the dog has lifted the depression and doom atmosphere began by the beginning of The Divorce.



I'm also not sure whether the animal will better serve her as a traditional service animal (depending on how her experimental vision treatment, Idebenone, continues to work long-term) and the fact her bipolarism is extremely strong.  When she's in the moment - she puts that little girl with the spinning head in the Exorcist to shame.  Evil.  Stress is her main button.  State standardized testing this year made her suicidal.  I'll tackle that issue in another post.

I've said all these words, but realize I haven't really described my daughter at all.  She's extremely intelligent according to standardized testing and has huge blue eyes framed by black lashes as big as paint brushes.  She started struggling somewhere between ages five and six with depression and rapid mood swings.  She started throwing herself on the floor, banging her head and pulling out her hair to cope with the stress while she begged me for help.  She loves poetry.  At six, she made me buy her a $35 hard-backed volumn that I knew I'd regret.  I never did, she reads it frequently to this day.  I love her more than life itself.  It would be an honor to take a bullet for her.

I fear that my beautiful, passionate daughter who is now beginning to write her own poetry is being ignored by the world.  Bipolarism just doesn't get the press other disorders do, but I assure you - it's terribly disabling and terrifying.  You are trapped in a brain full of negativity and depression, unable to understand or figure out how to help yourself.  Many adult bipolar patients are misdiagnosed for years, sometimes decades.  Even childhood patients who fit the profile usually are diagnosed with an "Unspecified Mood Disorder", because many experts in the field feel hesitant to rush to a bipolar diagnosis.  It terrifies me to watch her rapidly-cycling between hysterical giggles and throwing household items across the room screaming like a mythical creature.  I'll spend the rest of my life fighting for my daughter's quality of care and a cure for this insidious disease.  I won't allow her to fall into it's black pit and never return.  The suicide rate for bipolarism is 20%.  My daughter won't be the one in five who succumb.

Please support my calls that more attention, research and money be put towards Bipolar research, both adult and pediatric.  Contact your local and national representatives in legislature to let them know this terrible disease has destroyed the life of too many beautiful, bright-eyed children for too long. Call and write letters.  Start internet petitions.  Let's raise a little hell, people!

Resources:
http://www.internationalbipolarfoundation.org/

http://www.dbsalliance.org/site/PageServer?pagename=home

http://www.nlm.nih.gov/medlineplus/bipolardisorder.html

http://www.bipolar-foundation.org/

http://pendulum.org/support/support_organizations.html

Finally, a research study!
http://patientinfo.nimh.nih.gov/BipolarDisorderPediatric.aspx