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Archive for the ‘Aspergers’ Category

Being a Mom is difficult, even in the BEST of situations!

I see my friends struggle with motherhood all the time.

Sometimes I can laugh and agree with them. Sometimes I empathize and feel their pain. Sometimes I bite my tongue and don’t let my opinion or disagreement be know, and sometimes I actually learn something.

Sometimes I learn from myself.

I became a mom at the tender age of 20.  Still merely a baby myself, I had so much to learn.  I tried my hardest to be a good mom, I never neglected her or abused her. I actually OVER doted on her and spoiled her in my effort to have her love me more than her (mostly absent) father.  I do look back and see glaring mistakes I made with her along the way…. mistakes that I wish I could undo or make right, but that’s all part of growing up, right?

My daughter was showing signs of mental illness and gender identity problems even at age 6 and 7, long before it was “cool” to be gay or “accepted” to be Bipolar.  I worked hard to get her help and counseling, but there was little know then about these issues.  Abandonment by her dad at age 12 did little to help the state of her mind.

I myself struggled with panic disorder and depression, anxiety and PTSD, making it difficult to function normally when I even did function.

Add to this already simmering pot of potential disaster, a screaming, broken, sick all the time,  baby boy… and you have a house full of exploding emotions.

I remember one night when Owen was about 2 months old, he had been crying for hours (again), nothing could calm him, he was in a terrible state.  I finally put him in his bouncy seat, in his crib and went to the bathroom to weep.  Marissa came in the bathroom and placed her hand on my shoulder, tears in her big brown eyes, and with all the courage a 10 year-old can muster, she simply said “Mom, I think it’s time to send him back… I think he’s broken”.  It is funny now, but at the time… I wondered if she was right?!?! What had I done to our little family?  I had no business being a single mom, AGAIN.  I saw the future, and it terrified me!

Of course, you can see I didn’t return him to the hospital, abandon him or give up… no, I actually started working harder to “fix” him.  Only to run into wall after wall of phoo phooing doctors, old fashioned parents, strange advice from anyone on the street that was brave enough to approach us, and more simply… isolation.

It’s funny how fast friends will run away from a screaming baby.  They run even faster from a screaming, violent, still breastfeeding 3 year old!  Nobody would babysit, nobody offered to play with him so I could sleep, or study, or even take a shower.  Owen was kicked out of 8, EIGHT, Amarillo daycares by the time he was 4 because of his behavior.  He cried spontaneously, was very anti-social, smart but bored, couldn’t talk, had daily meltdowns, and was sick all the time.   I became very dependent on Marissa, even at her only being 12,  so I could do some things alone.  She learned how to pacify him, she put aside her own problems and tried her best to be a grown up, poor baby, she did a wonderful job.  But Owen was still broken.

I almost got kicked out of school due to Owen being ill all the time, I don’t know how many times I was written up at work for missing due to my sick child, or my being late because of his morning rages.  I was falling apart in every area of life, so was Marissa… we were a complete and total mess.

I never saw the seizures.  I never knew what to look for,  I hate so bad to admit that now, but I was unaware, untrained.  I want to blame the many doctors I took him to, I feel that they should have seen these gelastic seizures, his missed milestones, something that surly pointed to his seizures. However, they didn’t… and neither did I.  I just continued doing all the things I knew to do… hide us all away like a dirty little secret.  He would become raging and violent in the grocery store, people would stare, so I would spank him… proving to these strangers that I was NOT going to let this spoiled little boy get his way! At home when he would rage I would spank him, shut him into his room, hold him down, throw him in a cold shower… all done in hopes he would stop screaming.  He was violent towards me at these times, coming at me with toys, hitting, biting.. such rage in those eyes! I felt surly he was possessed or mentally deranged, I knew I was raising the next mall shooter…I knew I was the worlds worst mom!  I just knew he hated me!  He never hated me, though, for any of these things, it was like he never remembered… now I see that he really didn’t.  He was seizing, not tantruming, Thank God he doesn’t remember… cause I sure do.. and my heart cracks in two every time I remember how I treated him.

One day, Owen was about 3 1/2, he had just gotten kicked out of his 8th daycare… I was at a complete loss, crying and screaming at him, completely frustrated… so I drove straight to Dr. Habersangs office, plopped Owen right on the counter and started screaming a the receptionist “Please!!! Help us!! I don’t know what to do with him! Something is WRONG with him and I want you to FIX HIM!! PLEASE!!!”  This was the day Pia Habersang diagnosed him with Aspergers High Spectrum and a complete over growth of yeast in his digestive tract, ears, throat and urinary tract.

I finally had something to work with, to research… and ultimately blame.  Aspergers.

It all seemed to fit, mostly.  The allergies, the tantrums, the cognitive development delays, his being so smart, but yet so different form the other children around his same age.  This HAD to be the answer!

The rages became fewer and further between with the addition of the new Gluten Free diet.  He still had trouble in school and with large groups of children, but he was starting to become a little boy, rather than the monster he was for his first 3 years.  Ages 4-7 he did fairly well, only raging about once a week, usually right before he started getting sick, or if he had an over stimulating day at school.  One of the things I started to notice by this time was that weather and time of day affected him.  Like an Alzheimer’s patient, he experienced “Sun Downers” almost daily.  I would research this, and it always said this was a characteristic of Neurological problems, not mental disorders like Autism or Aspergers.  So I dismissed that idea, Yup, never dreamed I saw a sign as far back as then, until last week.  (Kick, Kick, Kick)

Meanwhile, as Owen seemed to improve… Marissa started her decline.  Moody, violent, down right MEAN at times…. I suffered through the verbal abuse, hurtful glares and violent attacks just as I had with Owen all those years.. by hiding them away from everyone.  I would nonchalantly roll my eyes when asked about Marissa… usually playing it off as “you know teenage girls”… but I was screaming out for help in my head.  She would make up stories about me and tell people at school that I was abusing her or Owen. She accused me of playing favorites with Owen, she would get jealous of Owen and my time together. Owen and I started taking weekend road trips to just “get away” from the drama and the seething anger.  This only made matters worse. She became suicidal and regressed daily, crawling into herself… abandoned once again.

During her second trip to the Pavillion, I was crying to my mom on the telephone, I remember saying “I should never have been a mother! My son is broken, my daughter is a mess… I should just leave them now, before anymore damage can be done!”  I remember those words like they were yesterday.  The moment I said those words I realized I was at a precipice.  I had the power to change things, to change things for the better… or for the worse and just run away.  I was exhausted, frustrated, depressed and broken.  I could either start standing up for my children and get busy fixing them, or I might as well leave, because life could not go on like this any longer.  I could no longer be selfish and lazy and expect them to get well all on their own.

The very moment I decided to accept my silly little daughter for what she is, a mixed up, deep, beautiful introvert… I feel back in love with her.  The medicine helped, but she was my baby again, warts and all.  I may not agree with everything she says, does or believes… but I love her, and I will ALWAYS accept her for who she is.

As for my little son, I was prepared to live a life of mental problems with him.  I was prepared to be battered and broken at an old age, in hopes that he takes his rages out on me rather than a girlfriend, wife or friend.  I was prepared to not work outside the home for a very long time, live off of welfare in order to keep my son safe and hide him away from the cruel world outside.  I would joke that he would be a 40 year-old United grocery store sacker living in Momma’s basement.  But it hurt to think that was all we had for a future.

Now the future is here.  A possible new diagnosis, a possible new way of living.  I am terrified but also excited for this future.  I see both the good and the bad side of this possible new diagnosis.  I worry that me concentrating so much on Owen again, will cause my daughter to slide back into old fears and feelings.  I worry that if Owen does ultimately have to have brain surgery to fix him, there might be complications.. he could be permanently blinded, a quadriplegic, suffer severe memory loss….

Yes, I still suffer from my own mental illnesses, anxiety and depression being the main ones at this time.  The loss of my mom weighs on me daily.  She had become my biggest advocate, my biggest supporter, my favorite cheerleader in the crusade to “fix Owen”… and even though I believe 100% that she is the one making all this happen.. I still would give my left leg and right arm for her to be here holding my hand and stroking my hair as I worry and wait.

I have made many, many mistakes as a mother over the past 19 years.  I have also done some very unusual, amazing and beautiful things for my children.  I admit.. I am jealous of my friends and their “normal” children, and their normal, everyday, problems…  but God chose to give me Marissa and Owen… and I cant  imagine a life with anyone else.  I will continue to work hard, to learn, grow and become a better mother.  I will advocate for their health and I will champion for their happiness.  Who knows, maybe someday I WILL be a real Mother of the Year!

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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 knew it was sitting there.

I could feel its weight pressing down on my brain. I could feel it as if it were fire.  I was not touching it, but I could still sense the weight of it in my purse.  There was a little over $4 thousand dollars, right there in my purse.  Blood money, free money, will money, payment for 39 years of being moms “perfect child”, her “sweet baby”.

The stress is getting worse.  The kids are compounding everything I feel.  Just like a crushed tomato tied back together with string, I still ooz and bleed with every touch, jab, word. Ready to fall apart, easier than before.

The weight of depression, hopelessness, growing faster than a storm cloud in my mind. “Why can’t we just have one day of peace? Why can’t I have just a moment to think? Why can’t we just spend a day together without the fighting, the anger, the competition for my affections and favoritism?”

I am exhausted. Just thinking of a simple task like cleaning house or making the bed seem to weigh 500 pounds on my bruised brain.  I want to hide. I want to run away and hide.

The money, it’s right there.  It’s ready to burn my hand the moment I touch it.  I’m supposed to use it for bills, Christmas.. the kids, not me… not for myself, the kids.  Don’t touch it.

I slowly pull myself up in the bed.  I glance at the alarm clock, 2:30p.m.  I had fallen here just moments ago.  My bed a rescue raft, floating in my room for me to grab onto and wail into my pillows until the hopelessness and suicidal thoughts pass on by.  My raft is still shaking, threatening to sink.  I’m screaming inside, “It’s not going to get better! It is NEVER going to get any better!”   The kids will never get “well”.  Neither one has any illness that can be cured.  I will just be stuck in this life for the remainder of mine.  The same violence, the same temper tantrums, the same emotional drainage of mom day after day.  It. Will. Never. Get. Better….

I slowly drag my aching heavy limbs out of the bed and start pulling on clothes.  The argument that had just occurred between my children and I still ravaging my brain like it’s on repeat. The same depressing mantra on repeat:  “Its happened before, it will happen again, again, again, it will happen again.”

I look around the house. It’s a disaster. You would think that my teenage daughter, seeing her mother is drowning, would at least help with the housework.  I start pulling together dirty clothes, I make separate piles of colors and observe how they look like piles of dead leaves.  I will do the laundry, I can at least do that.

I quickly start to come out of the fog, suddenly I’m on fast forward.  Laundry, sweeping, dishes, clutter… each task tackled in a mindless rush. I can at least get these things done. I can at least leave a clean house.

The kids are in the background, sighing, stomping, slamming, sniffling… each, in their own passive aggressive way, are driving the nails into my back.  “You deserted me!”  “You took her side”, “you took his side”, “It’s not my fault!” “It’s all his fault/Her fault/YOUR fault!!” Each silent accusation a dart going into my skin. I ignore each dart with a disinterest, a tear slipping out silently instead.  “Don’t treat me like that”, I cry inside.  “I’m the one that loves you more than life!” “I’m the only one that understands you, but I’m tired!! Don’t yell at me, don’t hurt me! It hurts to be used like an emotional punching bag” “it hurts, It hurts, I HURT!!!”

Instead, I just keep cleaning, tears running down my face.  I want to run and hide, back onto my raft, back into my cave, I want to cling to the safety of the bed and hide. I keep doing the dishes.  I look out the window into the backyard.  Birds, a dog, a squirrel… things that usually make me smile instead make me feel the exhaustion of my own inner darkness.  There is such an anger in being depressed, like, how dare the sun shine when I feel such pain? Does it not care that I can only feel, can only see darkness?

Dishes, concentrate on the dishes.  Concentrate on the work.  Feed the bird, feed the dog, mop the floor, change out the laundry, feel the weight of the money in my mind, count it.. weigh it… smell it.. finish the dishes.  Finish the Dishes.

Freedom is in the weight of that money.  Freedom from everything weighing me down in this house, in this life.  It will never get better, so why stick around?  Why should I stay here and watch it all fall apart?  Why should I be the one to always have to fix, mend, tape, glue, wipe, heal… Why should I be the abused one? I can’t think, I can’t heal, I am supposed to be “momma’s STRONG girl” but my strength was obviously buried along with my mother.  It’s holding her hand in the cold darkness, it is certainly not holding my hand as I struggle to stay afloat.

I finish the dishes, I continue to stand at the sink, the moment has come.  The moment that entered my thoughts as soon as the money hit my hands.  Turn around, walk out the door, fill up the car and just go… just GO…. Walk out the door… WALK OUT THE DOOR…

I can’t seem to move.  Whats the problem?!?! Why am I not doing what I should, what I want, What I know will keep my children safe.  I am the problem, I am the reason their life is so chaotic and horrible.. I should leave, let them move on, let someone more stable and healthy deal with their needs.. I Should Just Leave.

I slowly turn around, away from the sink, away from my old life, away from the accusations and the pain. I turn, I turn away and find myself looking at the alarm clock, the alarm clock beside my bed… 2:35 p.m.

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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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Well, it really has been a very long time since I have posted very much here, and I am short on time to say too much about the tremendous ways my life has turned on it’s head, inside out, upside down… however you care to say it… life has changed.  Mostly for the better, but defiantly for the poorer!

I am no longer able to even THINK about planning a Seattle road trip for a long while, I am not able to count down my Fortieth Birthday with a Bucket list of “things to do”…  And I certainly am not excited about much these days.

But I truly did do the right thing by quitting my job and staying home with my Autistic son, I do know that and it is confirmed everyday. I just wish I knew where I was going from here!

 

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