Sunday, May 27, 2012

Ask and you shall receive.

After years of searching for a support group a way was made for me. I attended the first meeting for parents and caregivers of children with mental disorders yesterday.

There came a time when I stopped talking about "Eli's story" because I felt people got tired of hearing it. I was afraid Eli would receive a negative stigma from me outing him publicly. That has been the case on few occasions but I soon realized that having Eli in your life is a honer and their loss for those few who view him as a danger or hassle.

I know I have gained a few more readers and wanted to get back to blogging on my initial purpose. The reason for this blog in the beginning was a outlet for me and a inlet for others in my position. Since my first blog my Momma was diagnosed as well. I will include her story as well. Naturally I can't speak for her as I can Eli but know that she would welcome speaking to any adult who needed support as well. Email me and I'd be happy to help you get in contact with her. For those who have just joined our life and reading my blog I will start from the beginning.

I was adopted by a fantastic family as a infant and joined a home with two older brothers ages fifteen and eighteen. My parents were in their late thirties when I became their daughter.

Growing up Mom was normal to me. Always in a consistent mood. I had heard stories
about a hospital stay she had before I came along but they always laughed about her
odd behaviour at that time and doctors wrote off her actions to a bad reaction she
had to some prescribed Valiums they had given her to help her relax and sleep.

In 2006 she began to act in ways I'd never seen before. Eli was 3 and I had not yet
began to think my baby boy had a mental disorder. I thought he was just a very overly active
child who required little to zero sleep.

Mom began to complain with little pains here and there. She was never one to
complain while I was growing up. She never got overly excited. Never screamed. Never
complained. Worked her fingers to the bone.

These little complaints with pain got more severe. She'd sit and cry with her head
hurting, neck hurting, back hurting. She would call me in so much pain one night, and
the next be up rearranging furniture and organizing cabinets in alphabetical order.

Dad called me to come over one night and Mom was in the floor. Motionless. She did
not even blink her eyes when we spoke to her. She had
fell/collapsed while going to the bathroom. We called 911. While waiting for a
ambulance she snapped too like nothing had happen and began screaming a hair curling
scream. Xrays at the hospital showed her to have CANCER IN HER BRAIN!!! For two
weeks we were made to believe this woman was dieing at any moment only to learn it
WAS A MISTAKE WITH THEIR MACHINE!!! We were relieved but confused because her
behaviour fit someone who would have brain cancer. There were several trips to the
ER that first year before Daddy found her upstairs one night beating her head
against a mirror.  When asked why she was doing that she informed us she had done it a few times previously because "the voices told her too". We took her to the Medical Center where she
spent some time and got a combination of meds that finally made the screaming rages
stop and she even began to sleep some again. I feel she was discharged too early
looking back now. I was very uneducated then and never spoke up.

By the end of 2007 things were almost normal. But, then I began to wonder what normal
really was. Eli was four and I had added another son to our herd, Zackery, who was one by this time. Eli was about to drive me bonkers. Off the top of my head I can remember him climbing
the antenna pole at least once a day and about to jump off the house. Not to kill
himself,  but because he thought he could fly. He would sit on his bicycle in the
middle of the road and want a car to hit him. Again, not because he wanted to die,
but because he thought if they tore up his bicycle the driver would have to buy him
a new one. He thought he had super powers that would allow him to survive impossible
situations. Still at four years old I brushed the idea something was wrong under the

I gave into ADHD meds at four, but saw absolutely no improvement until he was 5 and
we had tried four or five meds and dosages until I saw the doctors where really on to
something with reccomending meds when we found a coctail of stimulants and mood stablizer that worked. My parents believed there was no such thing as ADHD and that he just
needed spanked harder. I had no support when placing him on meds. For a long time I
kept it hid that I was medicating him because it made me feel as tho I was a failure
and had done something wrong or couldn't handle my own child. I was also one who started meds and stopped them numerous times because I felt I could "fix him" with nutritional changes and herbs. This may help some children but for us it proved to be useless horsesh#t.

In 2009 I tryed for that little girl I'd always wanted! Mom was on the mends and I
still thought Eli was just a spunky boy. Things were calm for the most part. I was pregnant with......surprise....our forth baby boy.

Eli continued to more of a defiant. He done unspeakable things. He was cruel to
animals. He was impossible to get along with. The happy little toddler that I once
knew turned into a very unhappy 6 year old. When he got mad he set things on fire
outside to begin with. Then one night he set his bed on fire and plainly told us he
intended to burn the house down with all us in it. I was very pregnant with Evyn (son #four) when Eli's more serious features began to surface. I spent many nights fat, restless and studying Eli.

We were introduced to the world of antipsycotic medications.

After a time of peacefulness with  Mommy, she fell down the basements steps and gave herself a
lovely brain injury and broken  pelvis. She was immediately sent out from TJ in Glasgow  and spent the  entire Summer and Fall months in the trauma center and rehab in Louisville. We
were scared this injury would bring on another episode with her, but she came through
that whole ordeal and never had the first problem. 

Evyn, my forth son, was born January 5th 2010, two weeks late. I wont go in to detail
about his birth because it doesn't pertain to a mental disorder. I have a blog about
his problems at birth. He almost died. We were in Kosairs with him a long time. He
had surgery when he was a few days old. His intestines where not developed correctly
and he  was having bowel movements from his navel stump. (I later read where
stress during pregnancy was linked to physical and mental disorders and have blamed myself for
 Eli's problems and Evyn's ever since. For the record Evyn also shows features of AHDH, but I am
hopeful that ADHD is his only issue)

More med changes for Eli. More doctors. Specialist. We waited 14 months to be told
what I already knew by the Weiscoff Child Evaluation Center in U of L. Conduct
Disorder w/ Bipolar features. Depression. OCD. Ad/Hd. We then began talk therapy and a stricter medication regimen. We finally got in to see a Psychologist I'd been trying to see for a year. The cards seemed to be layed out or Eli perfectly. Keep in mind that insurances won't cover the majority of mental treatments and its been a long expensive road. I found my laugh again nevertheless. Spring came in on a good note. We cruised through life for a few months.

Mom had a relapse last Summer. It was like NOTHING I had ever read, seen, heard
about. I saw it sneaking up on her for months but it was out of my hands. She acted like a Alzheimer's patient and was misdiagnosed with early stages of Dementia.  She had no short term memory. The features this time were polar opposite of what we'd experienced with her in the past. At her worst,  she called and had a team of people come to their home from Tennessee to have Daddy committed for treatment. That was a terrible mess. Dad is in excellent health and since she was his power of attorney she had the last say so in having him hospitalized. She also called 911, twice, and told
them Daddy was dead. We had to hide keys for fear she would leave in the night and
she tryed too many times. She acted like a full blown Alzheimer's Patient. We later
learned that these hallucinations were a side effect to Ambian. At her worst point she
had been awake over 200 hours. In the ER she was given Clonidine after previously
taking Xanex as well as a large dose of Ativan via injection and she still did
not shut her eyes. TJ sent us home with her with little hope. The Medical Center was
full and didn't have room for her unless she had attempted suicide. At this time she
started a new feature. Conversion. It's when the brain is overloaded and
practically shuts down. She would be temporally paralyzed from the neck down several
times a day. Many doctors don't believe Conversion exist anymore, nor ever did,  but I'm here to
tell you it absolutely does! I learned during this period of time that her Mother
suffered from this as well.

Her family doc was not getting the job done.  There comes a time when you have to realize that family practitioners are great for their area of specialty and that Psychology is NOT it. The medications that worked for her in the years past did not improve her this time. I am a spokesperson for staying on medications now. If you find something that works for goodness sake don't stop it without doctor supervision. Momma had quit her meds cold turkey a couple years previously
because she felt "fine".

After many phone calls and finally getting into a Psyc Nurse Practicioner by the name of
Sheila Ward in Louisville, we were finally directed to place her in Westwood. They
stabilized her with Lithium, Clonidine and Geodon. Since her release she has done
ok. This time she never completely recovered and went back to the Mom
that I knew all my life.

Eli is also doing well on Concerta, Depakote, Ritalin, Seroquel and Clonidine. Days
I feel like that's just too much medication for such a small little soul, but I have
to continue to encourage myself and convince myself that he is better now than I've
ever saw him. He is still unhappy most of the time. He can't be pleased. He'd cut
off his nose to spite his face. The smallest changes can be tragic. But, he's stable and he's not jumping off the roof, setting beds on fire or sitting in his room picking worms out of his legs.(yes, he
done that for several weeks)

"Just for shits and giggles" as I like to say when I tell people my family history
(excuse my expression) My adopted Mother is Bipolar as well as my adopted brother.
He has attempted suicide more times than I can count anymore and been hospitalized
several times in his life. My son is BP. My biological sister is BP. I
don't know much about my biological parents but given their substance abuse and
incarcerations, I'd bet the farm they both have underlying mental disorders as well. My
husband also suffers from extreme highs and lows and has been told he'd benefit
greatly from a mood stabilizer. He has yet to start medication. I am usually really
good at spotting a shift in his mood and can usually give him a good kick in the
arse to restart his behaviour.

I sit back a lot and wonder how in the hell I escaped this madness with only ADD,
OCD and Trichotillomania. (thank gawd)

This chaos is why I long for all the knowledge can grasp. I am now a student at WKU
and obtaining my Psychology degree one bite at a time. I know there will be times I can't
attend. Times when Momma needs me or Eli needs me. And that's fine. They will always
come first. Many people ask how I handle all I do and seem to surface each time unscathed. This is my normal. Sometimes I do get down on myself and think of how it
would be to be in a normal family with mentally healthy children, parents, ect. But
then I kick my own arse and tell myself that everything happens for a reason. I am
here to help someone, anyone. My children are spokespeople for having a sibling with
a disorder. They too will be a rock for someone someday I believe.

This is my story. Many things I've left out simply because I've forgotten or I chose not too. Sometimes each detail need not be revealed to protect our privacy. For the most part I am a open book. I will answer emails directly about anything or posted comments.

Also a new group in our area is being established. Feel free to contact me about that and I'll put you in contact with Ms. Kerry Johnson. She is also available to contact via FB.

I hope each of you have had a good weekend. Remember, it takes a village to raise a child.


  1. I think I've said this before, but I feel like I should say it again. You are a brave person. I hope that being open and honest about your experiences helps someone, and that no one gives you crap about it. I admire you so much, for what you do, for how strong you are, and for the wonderful person you are.
    BTW, congrats on those grades too! You just amaze me.
    I'll be in Edmonton in a week, so anytime you have time for that lunch date, I'm buying. Just drop me a note on Facebook.

  2. I'm so proud of you kathy you are a wonderful mother to your boys don't EVER think you are not. They look up to you more than you think they do a lot of people do including me.

  3. Thank you ladies. @Stacy.....I'd love that!
    @Lacy, I hunny.....I don't watch me too closely. I still need alot of practice. 13 years isn't nearly enough. We can learn to parent together!

  4. Kathy: I just came back to your blog to finish bc I had to stop reading yesterday. I know we don't know each other that well, but what an admirable thing you are doing. I'm sure this will touch everyone that reads it. I admire your willingness to help your family and others and your day to day strength, all while maintaining such a positive attitude! Prayers for you and your family. You go girl.