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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




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: