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Posts Tagged ‘Aspergers’

So not to put you to sleep within the first paragraph, I am going to refrain from delving too awfully deep into the history of my son’s battle with (what I have always thought was) Aspergers High Spectrum Disorder.

I have always had behavioral, health, mental and cognitive problems with my poor sweet boy.  However, just anyone off the street would look at him, listen to him speak and see him as perfectly healthy and normal with maybe a few “quirks”.

I have struggled for years to find the answer to his sudden, unexplained rages. His dibilitating headaches.  His learning and memory problems have become worse in the past few years.  He has never been able to ride a bicycle or tie his shoes, but he can complete a video game made for adults in a matter of a few days.

I digress.

I quite my job to stay home with both children.  My new mission became to have Owen diagnosed with Aspergers (the only thing at that time that seemed to “Fit” his vast array of problems), so we could start receiving some sort of disability.   The same week my mother was put into the hospital, Owen was grudgingly diagnosed by a psychologist with Autism Spectrum disorder, depression, OCD and possible bipolar.  We got our first check for SSI on moms two month (death) anniversary.

I’m trying to get to the point.. sorry…

Last Sunday, while trying to coax my son away from his computer long enough to play a round of Pugopoly, he burst into tears and started telling me how depressed he is.  He stated his head hurts all the time, he feels exhausted, he can’t wake up… I knew all these things, because it has been a daily conversation for over a year now.

What WAS new to me was the feelings that he just wanted to “die” because he is so tired of hurting all the time.

Crushed me! He is only 9!

I quickly googled “child psychologists in my area and found one, emailed him and received a reply back within an hour.  I took him for his first visit on Thursday, my son’s 10th birthday.

What this Doctor did, was nothing like I expected.  He first of all stated that I may hate him for what he was about to tell me, I may call him a “quack” and wish to leave, but to please hear him out.  He then interviewed me about Owens past history, asked Owen a few questions, watched him carefully for approximately 15 minutes all together…. and then sat back in his chair and simply stated:

 “I don’t think for one second, that this child has Aspergers!”

He then proceeded to guide me down a path of new ways of thinking, different ideas and completely new possible explanations for my sons strange ways.

Auditory Sensory Disorder

Temporal Lobe Epilepsy

He gave me these explanations, told me to go “look them up” read about them and give him a call back with my thoughts.

Totally aghast, lost and a little excited… i did just that.

The Auditory Sensory Disorder sounded a little like Owen.  The Temporal Lobe Epilepsy sounded a little more like him.. but neither one matched up with his rages, mood swings, memory loss and decline in school function and fatigue.

Then, I swear to GOD, my mother guided my eyes to this one sentence:

Some children with HH have significant difficulties controlling angry outbursts, aggressive tendencies and are diagnosed with “hypothalamic rages.” These rages often can be mistaken for “temper tantrums;” however, they usually happen quickly and without an identifiable cause or provocation. 

There it was!!! Something I could identify with… I kept reading.  It sounded like my son… it sounds exactly like him, Word For Word! It IS MY SON!! What is this?!?! What does he have?! This is IT!!!! I FOUND IT!

Hypothalamic Hamartoma

hypothalamic hamartoma (HH) is a rare benign brain tumor or lesion of the hypothalamus. Thehypothalamus is located at the base of the brain, and is responsible for many of the “automatic” functions of the brain including hunger, thirst, temperature, passion, and hormone regulation. A hypothalamic hamartoma can cause many types of seizures, precocious (premature) puberty, cognitive deterioration and severe behavioral difficulties known as rage behaviors.

Here is the link if you wish to read more on this:  http://www.epilepsyfoundation.org/aboutepilepsy/syndromes/hypothalamichamartoma/index.cfm

A tumor?!!

Oh God! What do I do with this new information?! How do I process this and keep this calm and quiet over the holidays?

I know it sounds exactly like him… but what if I put him through more testing just to find out I am once again WRONG. Did my mother show me this because she knows how much it means for us to figure this out?!

So, while I process this new information, prepare for the Christmas my family expects and start a New Year without my mom… I will pray, research and welcome ANY feedback any of you have for me!

I am at a loss!

Merry Christmas!

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I’m on the edge, the cusp, the jumping off point of my start to recovery and healing…   It’s off to the counselor I go.

I think she will be really good for me.  She seems like a very nice lady, from her emails.  I am anxious to meet her and get started, but yet am extremely nervous.  I hope this helps me. I am not used to telling a total stranger all my dirty secrets face to face… so pray my typing skills carry over into my verbal skills 🙂

There are so many areas for us to work on. So many areas I need to have fixed, like, immediately…

I’m glad I am seeing her today, it’s already started out pretty bad:

The boy was angry, VERY angry…. temper tantrum angry, not sure why… maybe he was sleepy, maybe he was Aspie-ing out on me. (I know that’s not a word, but anyways)

The girl is needing a med change, desperately.  She is clingy and needy, weepy and violent.

The babysitting baby is here early, she is a good baby, but just adds to the mess.

I spent the whole day at work yesterday  with “Mary Sunshine and Christian Happiness”. (She is a whole other blog on her own. )

I am ready for some of this load to be lifted.  Some of this burden to be, at least, redistributed at best!

I still am on auto pilot, on life support, exhausted and drained.

So, Wish me luck… Cross your fingers and say a prayer for me and my new counselor.  I hope she is “The One”.

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There is a character on the cartoon Foster’s Home for Imaginary Friends, that has ALWAYS made me think of my son.

The Scribbles.kendall_scribble(try putting clothes on that!!!)

This morning was no different.

How in the world did I come to allow this tiny army sargent, that is my 9-year-old son, into my home and continually allow him to run amuck in my life?

I am constantly aware of his Autism.  CONSTANTLY.  I am hypervigilint to his ever waking need for reassurance, peace and stability.  I am always policing his food intake (gluten-free diet, folks) and his video game, You Tube and Television consumption.  His homework takes several hours each night due to his inability to stay on task.  He rages if it’s bedtime and he is in the middle of a 45 minute You Tube video. He yells if I tell him to “stop talking and eat”, he is sensitive to every look, word, sound, texture and smell that you can think of…  I am always the calm, passive, rug.  Just someone for him to roll all over when he needs a soft place to fall.  I take the punches, the yelling, the rage and I don’t react.  I AM a punching bag…. on the outside.

I sometimes think about what I would LIKE to do.  Yell back, scream in his face, shake him, smack his mouth for talking to me that way. Spank him. Leave him alone to rage in his room without my audience. But those things can’t be done, not to someone with Aspergers.

If you have never witnessed a true Aspie “melt down”, well then… Bless Your Face.. You are lucky!

It is not unusual for him to scream and rage like a wild animal, slapping and punching himself in the face and stomach, face contorting into something that resembles the Incredible Hulk, suicidal threats rolling off his slobbery lips.  Snot, tears, anger, pain, frustration all pouring out of him like a river.  It’s terrifying, and once you have seen one a parent will do what ever they can to never see another one.

So, we become passive.  We become defenseless.  We allow this other human being to do things to us that we would be running to the shelter to avoid if it was a grown man doing them.

I never thought I would allow another person to speak to me the way my ex-husband used to.  But yet, that’s exactly what I did this morning.  I sat there silently in the car while my son ranted and raved about how bad he feels, and screamed at me for his nose being stuffed up, and berated me for ever taking him to school. Just last night he informed me I was the “best mom ever, and his very best friend” this morning I was his worst enemy, disgusting and stupid.

All in a days work, son… All in a days work.

I guess I hang on for those days that things are good, really good.  I hang on to the memories of  the calm, happy, precious boy who was making me laugh just an hour ago.  The boy who has such a wicked sense of humor I sometimes forget he is only 9.

The boy that loves his Mom more than life.  The boy who cuddles and hugs better than any human on earth.  I have to hold on to that.  I have to belive and trust that, no matter how big he grows to be, he will never lash out and hurt me. Not physically, anyways. I hope.

I just figure it’s my own fault for allowing him to hurt me emotionally and mentally right now.  I know he doesn’t even recall half of the actions and words he spews forth during one of his rages.  So I just have to live off of the sweet precious moments, and pray his rage never bends me further back than I can ever bend… I pray I never snap in half… I pray my back just keeps bending and never breaks.  I have to hold on to that… I have to hang on.

 

 

 

 

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Meltdowns, rages, anxiety, depression, diet restrictions, sleep disorders, social phobias, misunderstanding, OCD, fear….. and all this goes on my little 8 year-old sons shoulders. 😦

I am emotionally exhausted this morning after a full blown rage that lasted over 30 minutes, last night.  It finally subsided when he pulled himself into a fetal position and covered his head, then proceeded to bash himself mentally.  Crying that he wants to die, wishes he were normal, and wants to sleep for years so he doesn’t hurt anyone else.  😦  I am so sad, I am so sad for him, me, our pets…. our future.

God please grant me the wisdom and strength  to get him though this.  And please send the right people into his life to help us get answers and help.

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