My Ephiany

 On an October day I parked my car in front of the high school and as I waited for my son who would have conferences the next day I observed the following 

Approximately nine yellow school buses were parked in front and they were being loaded by high school juniors and seniors decked out in Halloween costumes some of these kids clearly had down syndrome some of these kids were in wheelchairs some of these kids were most likely blind because they had seeing devices and some of them were an unidentifiable disability to me as having disabilities. Clearly this was a gathering of specially abled children there were many adults near the children some of the adults or actually guiding the children and following them to the destination. Some children were more independent and could walk and talk and get on the bus all by themselves most of them were independent thinkers and independent doers I did not see a lot of interaction between peers as I have witnessed other high school students. But there was a lot of smiles and happiness and costume shares as I saw snow white Darth Vader superman Pinocchio peter pan a police officer a sheriff a princess a B and many other recognizable characters for Halloween

This is when I had my epiphany

Clearly each of the students had an IEP and we're under the guidance in care of special-education teachers just like my son Carson.

CAPS

ACTION FIGURES. Independent. Focused persistent. Alone  child-like

Other projects: collaborative. Mature. Adult concepts effective. Creative. Group effort. 

Am I the problem? 

Another Mom's lamented experience with "Normal"

These writings, discovered in my FB feed, reflect my son and my families experiences, thoughts and principles learned over 15 years of parenting a LD child.

Tourette Association of America: Carson presents to 200 elementary-aged- kids

Here is a link to videos of Carson's presentation inspired by the Tourette Association of America

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Rally for Tourette in Washington DC

#Rally4Tourette

#TouretteConf16

My 17-year-old son and I flew to DC for a 2-day Youth Ambassador training for the Tourette Association. We stayed in the Alexandria, VA Crystal Gateway Marriott.

My son and I got to share our personal stories with 2 KS senators legislative AIDS and 1 Congresdional legislative aid!

Teens, Tourette's and OCD: an upate after 3 years of silence

My favorite color is blue. It makes me happy. I bought this purse after only a 3 minute search through the Kohl's 80 percent discount aisle in March of 2015. It reduced my stress.

I bought this book 3 hours later at a Barnes and Noble while hanging out with my handsome hubs, 16-year-old son and 10-year-old daughter. We looked like a normal, happy family just beginning a much deserved Spring Break and buying a few new books for our time-off.

But the day was far from NORMAL.....................

Our son had just met for 6 hours with this neuropsychologist:  DR. JOSH HALL,  to be evaluated for an IEP.

For at least 3 years prior to this day, my son with Tourettes had developed hormones and anger and independence and OCD. These raging chemicals in his body preparing him to pro-create and bring life to this lovely, beautiful and complicated earth created by a loving, all-knowing benevolent Heavenly Father, had caused much frustration with our relationship as parents. WE FELT HELPLESS.

Parents of teens remain silent on social media for the protection of their beloved offspring. Parents of teens with Tourettes are even more silent!

Our knowledge, support, love and guidance to our beloved son certainly did not stop during this time. I have gathered a lot of "digital" files and a stock pile of motivational quotes and phrases to help me navigate these treacherous years.

I've contemplated, persepherated, and rationalized posting these thoughts and wanted my words to be "just right."

This long, laborious and emotional process has been .....well ..... It has sucked big time!!

I am done trying to write the words just right and explain.... I AM JUST HITTING POST and moving on. Who will really read and digest this info anyway?

--Dr. Joshua Hall 


LINK to my PINTEREST PAGE and information on Tourettes.


Current Plan of Action

1.  Secure and maintain an IEP with local school administrators and other team members
2. Submit needed documents to the ACT to request more time
3.  Sign-up for a one-on-one tutoring class in preparation for the ACT:
4.  Investigate local community colleges and their offerings to specially abled individuals with IEP's
5.  Continue to follow-up with appointments and medicine prescribed by psychiatrist, Dr. Battersson.


ACT  accommodations--March 2015

TWITTER ACCOUNTS: 

Diagnosis: Tourettes--5th grade presentation

Just when you think you are settling into accepting a medical diagnosis that may change how your tween reacts in middle school, you show up at his middle school family fun night and observe him.

Quiet, sullen, alone and seemingly ignored around a crowd of energetic, happy and enthused tweens. Tears freely surface as I reflect on the other occasions (too many to list) that this observation has occurred.

No one knows their children like their mother and I have had the privilege to learn so much about my third son by participating in his medical appointments and therapies we have chosen to support to help him understand and deal with his tics and lack of attention.

He is honest, caring, capable, determined, talented, observant, and loved by so many--just not kids that attend his middle school!

Doesn't every parent want their kid to be accepted, loved, and included in school classes and activities?

A lesson from my tween on coveting

My third son wrote this passage and presented it to our church congregation. It is a lesson to me that tweens really do "get it!"

A week ago, I was in our family’s living room holding my prized (and only) snow globe that my mom sort of gave to me as a gift a few years ago. I had been polishing it earlier in our dining room (I polish stuff when I'm bored), which is why I had it when I went to ask my dad what clogging was, as it had been mentioned in my book. To make a long story short, I went to my dad to show him how Richard Paul Evans had made fun of the dance, making the stupid decision to carry my snow globe with me. I heard my dad say “careful Carson”, but it was too late. In that very second, I dropped the snow globe, which bounced off the carpeted living room floor into the kitchen, and shattered.

       It took a few days, but I soon realized that this was most likely a test to see if I was capable to understand that material things don’t matter- I shouldn’t covet them. If so, I flunked it. It took until my realization of this lesson to mostly get over my snow globe breaking (mostly).

Not coveting is a lesson that we all need to learn. Hopefully, to all you young children, you don’t have to learn it the way I did, but just be warned: if you do, don’t go into near depression like I did. Just know that it is a test.

Diagnosis: Tourette's--Links to sites helpful in relieving symptoms

In 2nd grade, our third son, born in 1999, was diagnosed with ADD/Tourette's by a child psychiatrist. Choosing courses of therapy/medicine to relieve his symptoms was an emotional, long-suffering, and ever-evolving task, however, one that has resulted in a tween thriving in school and confidence. 


Because this syndrome has no cure, one must navigate the symptoms and survive physically, emotionally, and socially with confidence and understanding from oneself and others. Witnessing the constant and annoying tics on a daily basis is gut-wrenching for parents. Imagine a child plagued with "itches" that must be scratched? How can this affect the psyche of your child?


After much prayer, research and lamenting, our family focused our energy on HIS feelings. It made it possible to avoid constant negative statements so naturally rolled off our tongues nagging him to stop an uncontrollable behavior. 


Information we use to help our son:


•  Tourette's Syndrome Association 
•  Habit Reversal Therapy 
•  Current Research on Movement Disorders
•  Research studies of Tourette's--Brain Imaging
•   Tics-R-Us
•   Dr. Ed Christopherson--our son's TICS worst enemy!
•   504 Plan

How our son helps himself:


•  Stood up to his 5th grade classmates teasing him
•  Used a simple, visual powerpoint presentation to educate his peers about why he has uncontrollable, strange behaviors (contact me for more presentation information)
•  Participated in 16-week Habit Reversal Therapy
•  Uses medicines to manage his ADD/Tourette's prescribed by his child psychiatrist

No one knows a child like their mother and I have had the privilege to learn so much about my third son by participating in this coping journey. He is honest, caring, capable, determined, talented, observant, and loved by so many and we are pleased with the results of the course of therapies/medicines

Diagnosis Tourette's: symptoms of my son and when it began

What does a parent do when their three-year-old starts licking things---chairs, books, his shirt, food, other people? 

Beg, plead, haress, whine, yell, bribe.......PUNISH?

Those are natural, human responses to behavior socially noticeable and awkward. 

After a particularly difficult 4th pregnancy requiring a laproscopic endoscope four months after giving birth, my husband and I noticed our son doing this:   (licking!)

We TRIED to do none of the above because we recognized that activities in our home were stressful and his behavior might be a reflection of that stress.

This "licking" tic reoccurred since the syndrome began and it involves the tongue. It occurs about every 15-30 SECONDS.

Throughout a vacation, I photographed our 10-year-old son:

  Other tics include:

     •  turning head from side to side

     •  loudly clearing his throat

     •  turning hands over and tapping them on flat surface

     •  bending at the knee

Diagnosis Tourette's!

Although his tourette's is mild, it does not appear so with this tic. He has managed to enjoy school and relationships with peers, however, I have observed him being much more of an introvert than early childhood.

The transition to middle school is difficult for any student and for him the anticipation of this event was unnerving because he knew he would be exposing himself to many more students who have potential for teasing and bullying him regarding the unknown.

Near the end of 5th grade, the licking tic gained momentum and classmates began staring and bellowing suggestions to Carson that he stop that bizarre behavior. He reverted to his shell.


My next post will describe our actions as a result of this behavior..

Education and understanding is key to this syndrome and it is my hope to continue to do this with his peers, teachers, and leaders.

The is the reason I have opened this dialogue on my blog with hopes of providing a bright future for my son. He is a delightful boy with so much potential. Even though there is the hope that his tics will disappear into adulthood, he still needs to survive adolescence and all the challenges and trials that come with maturing.

College Health Sciences Professor with tourettes 


Famous Person with Tourettes

If you want more information, contact me:

Diagnosis: Tourette's and Erin Brockovitch

Recent news of famed activist Erin Brockovitch getting involved in a bizarre case of "tourette's" like-symptoms in several students in a New York High School caused me to reflect on my third son's diagnosis of tourettes/ADD in the first grade.


This video represents one of his tics--turning his head and looking back.

He struggled with this tic for several years prior to completing a habit reversal therapy, one of the many treatments we chose to participate in.

No matter what the cause of these tics for these high school students, the painful reality of the effects leave a victim and their families to seek whatever means necessary to gain answers. Judging one's motives to seek assistance from medical, environmental, scientific, or otherwise may not be helpful to a positive outcome for the sufferer.


Familial support and assistance to relieve the patient's struggles is crucial to surviving with the tics until relief is assured or a positive change from the symptoms is revealed from whatever research is provided. Hope is very necessary throughout treatment.


Sharing our experiences with tics/tourette's/ADD may not offer all answers for those experiencing uncontrolled movements, however, gaining knowledge and other's experiences was vital in managing this rare and curious condition. 


For our family, medical science, research, philosophies, and associations proved to be the best choice to help our son be his best self and live with incurable symptoms. After seven years, we have seen remarkable improvement in managing his tics. He is thriving within his own skin.


In the next week, it is my goal to share our journey managing this syndrome with our son.

If you want more information, contact me:

The 5 Browns--Starstruck tween

One-on-one time with each child is often challenging to achieve, but so worth the effort.

For a weekend event, the 5 Browns, siblings who all play grand pianos simultaneously, performed 2 pieces on 5 Grand Steinways at Schmidt Music. I attended the concert with my third son.

We got to meet the quintet. My special needs son shared with, Ryan, the oldest, that he struggles with tourette's and he still plays the piano and loves it. He also conversed with Desirae, the youngest Julliard graduate, who has lost her sight in one eye and is learning to live with this disibility. Desirae continues to excel at playing and memorizing very challenging music. Both siblings seemed to be very engaging towards my son and that impressed me.

Tourette's and Attention Deficit

March 2010---Age 11

Our third son was diagnosed with tourettes/ADD when he was in first grade. He is unique. He has special needs. He is special to us. 

After years of therapy and acceptance, he has been doing quite remarkable accepting and understanding his TICS and so have I.


Although not the energetic, outspoken, extrovert I observed as a toddler, he has settled into his new "normal" as he emerges into "tweendom'"


Tourette's is an inherited neuropsychiatric disorder with onset in childhood, characterized by the presence of multiple physical (motor) tics and at least one vocal (phonic) tic; these tics characteristically wax and wane. Tourette's is defined as part of a spectrum of tic disorders, which includes transient and chronic tics.