My Invisible Disability!

I have spent so much time and well forged energy allowing my children a space to have a safe space to have their needs, typical or otherwise center stage.  In fact none of them are really aware I blog about them; the good, the bad and the ever so often ugly.  I have not I realize shared my story in the realm of invisible disabilities.  It actually started at birth.  I was born with a congenial cataract.  It was no one's fault, in fact when I realize what could have developed a single cataract seems fabulous.  Yes, I has a cloudy, gammy eye for a few years.  A few surgeries later, ok, four, it's as good as it gets.  Perhaps another surgery on the horizon, but nothing major.  Just can't be drafted into the army.....dammit!!

I am fairly sure I was an undiagnosed ADHD child/student.  I suspect those who know me as a child ,or teen or a relative are chuckling knowingly right about now.  Of course meds were minimal to non existent where I was raised.  Still, I found a way through a college education.  I emigrated, married, had my three special needs kids; they and their needs consumed me.  Well, they had to, I was their only voice for so long.  I was diagnosed with low B12 and I am receiving B12 shots.

Which brings me to today.  The last 8 months, maybe even a year I have been plagued with these bizarre seizure like episodes.  To the outsider, they appear mild.  I glaze over and within' minutes I simply have to lay down.  I know by the time I lay down I will fall asleep.  This is not optional, there is now way to keep me awake.  I sleep between 45 minutes and two hours.  It's a dead sleep, no dreams, no outside noise penetrates.

My GP suggested I just avoid the foods that triggers these episodes.  However, that is easier said than done.  I don't know a trigger until I collapse.  The only beneficial help has been an all vegetarian dirt.  Once I introduce fats, carbs and especially meat protein, it's Goodnight!  Tonight, I ate fried chicken.  I had avoided meat for weeks.  I was in a bind and had to eat something.  Made it home and within thirty minutes I seized and was in the deepest sleep you could imagine.  I am becoming quite ticked that my GP won't listen to me.  "Avoiding" trigger foods is NOT my idea of finding the most important answer....why?

The Medication Quandry

I find it absolutely incredible the public and even professional debate that occurs when the concept of medication and kids' neurological issues comes in to play. One just doesn't hear the same rhetoric with any other organ in a child's body. Perhaps it's because the brain is such an enigma still, perhaps it's because the brain is what makes us all who we are; all I know is everyone and anyone appears to have an opinion on it.

This is my view, if your kid is neurologically healthy, intact, stable, happy, healthy then more power to you. However, if that same parent or adult chooses to judge another parent with a neurologically impacted child, well honestly, go and soak your head. I certainly wouldn't judge a parent of a child with diabetes and the med they go with to help their kid! In reality anything that is neurologically altering bothers the hell out of most normal folks, and so it should. It took several years, many more episodes and a broken acoustic guitar over a grown man's back to get us to go that route.

It saved my son's life.

When your 4 year old announces he can fly and opens the car door at 65 mph on the highway come back and judge.

Today I have a happy, healthy, hormonal (in a NORMAL way) funny, creative 11 year old. You want to judge our choices? Still soaking that head, bloody hope so!!!!???

Hair.....down there!

The joys of bipolar disorder as one of several neuroloical disorders also brings with it the "joys" of being a micro manager.  Every time your child has an emotional hiccup, you are left wondering, (a) was this bp, (b) was this his meds need tweaking, (c) he's being 10, (d) his hormones are kicking in.    For the most part Jacob's issues are Adhd, (heavy on the H) related.  His bipolar has been well contained the last 2 years.  He does well on the med he's on for adhd, that is until it wears off....between 4 and 8pm.  Basically 4-8pm are ...ahem, rough.  I also have a prescription for an afternoon dose, but in general it just makes him an insomniac.  I don't recommend it, so I ride out the hyperactive, silly, screaming Jake.

So, here we are.  Jake will be 11 in March and today he announced (both visually and verbally) he has hair down there.  Yes, my jaw smashed to the floor and I had one of those time lapse flash backs over the last decade.  With a typical boy there are ways to deal with this.  It still may be awkward and difficult, but with a boy who is chronologically 10 and emotionally 6, well, let the social stories commence.   Personally, I would rather drink turpentine!