Tag Archives: Tuberous Sclerosis Complex

Chicago Torture Video is More Than a Hate Crime

This is one of my NO BARS HOLD blog posts.

I am always up late, so at 2:30 this morning I finally decided to watch the Chicago torture video.  In case you are unaware of what I am referring to, this is the video where 4 African-Americans, 2 males and 2 females, tortured a white, special needs male for hours.  One of the female suspects live streamed it on Facebook.

I literally cried and gasped during the nearly half-hour long video, only pausing it twice to watch CNN’s Don Lemon and a panel of commentators discuss this heinous act.  It is actually beyond horrific.

I am the mother of a special needs child.  My 10 year-old son has a rare disease called Tuberous Sclerosis Complex (TSC).  He also has Autism and a multitude of health issues.  So as a special needs mom, I know exactly what that young man and his family are going through right now.

I definitely feel it is a hate crime, especially with one of the attackers yelling, “Fuck Donald Trump” and “Fuck white people.”  They repeatedly called him “nigger.”  But I also feel what they did is more than just a hate crime.  What those four imbeciles did was a COWARDLY act.  Those no good, sorry ass clowns are merely cowards.  Not only what they did was wrong, but they kidnapped and tortured a person from the vulnerable population (children, elderly, disabled).

We need to stop being divided as to whether that senseless act is a hate crime or not because to me, it’s just a CRIME.  I just read the attackers are being charged with a hate crime, felony aggravated kidnapping, aggravated unlawful restraint, aggravated battery with a deadly weapon, residential burglary, and possession of a stolen motor vehicle.  I hope they get the book thrown at them.  Truthfully, I want  them to receive the maximum sentence for each charge they face, even if it means locked up and never seeing daylight again.

My heart nearly dropped to the floor as I watched that Chicago torture video.  Tears heavily flowed down my face.

I have two children, sons ages 14 and 10 (special needs as mentioned above).  My oldest told me that he heard about the video but that he’s not going to watch it.  I talked to him about it today, telling him some of the events that took place and he ignored me.  So I stopped talking.

You see, my boys aggravate each other, but they also love each other.  The oldest bothers his little brother all the time,  but at the same time he is very protective of him, and is ready to fight at any given moment over him.

If you are reading this and are special needs or the caregiver of a special needs child or adult, then you definitely understand where I’m coming from.

As I step down from my soapbox, I would like to say that I might sound harsh in this blog post but guess what?  I don’t care.  What those cowards did was senseless.  Pure evil.  Not only did they disrespect that young man and his family, they DISRESPECTED the ENTIRE SPECIAL NEEDS COMMUNITY.  Tuberous Sclerosis Complex, Autism, Cerebral Palsy, Down Syndrome, physically challenged, mentally challenged, etc.  When one hurts, we all hurt because the special needs community is one big family.

My Son’s Train Obsession Became His Best Christmas Gift Ever

Two weeks before Christmas my 9 year-old son told me that all he wanted for Christmas from me was for the two of us to ride the Amtrak.

I told him that we could ride the Amtrak for his Christmas present, but that I still wanted him to open something on Christmas morning.  He actually wanted to ride the train on Christmas Day but knowing that nearly everything would be closed, he said I could buy him three books to open.

A train ride and three books was all my son wanted for Christmas.

Tavares, 9, anxiously waits at the Flint, MI Amtrak station wearing a Jr. Conductor hat
Tavares, 9, anxiously waits at the Flint, MI Amtrak station wearing his Jr. Conductor hat

Tavares is the youngest of my two children.  He is a special needs child that was diagnosed with a rare disease called Tuberous Sclerosis Complex before he was two years of age. I came out of denial and blogged about it last year.

My son has a multitude of medical conditions including:

  • Tuberous Sclerosis Complex
  • Autism
  • Several brain tumors
  • Seizure history
  • Developmental delay
  • Renal (kidney) cysts
  • Hypertension (high blood pressure) requiring daily medication
  • Right leg swollen since Memorial Day of last year
  • Behavior challenges (can have aggressive meltdowns)
  • Peanut and tree nut allergy.  Severely allergic to peanuts, cashews, walnuts, and pistachios

With an early childhood education, and ongoing learning and support at school and home, my son has come a long way including:

  • All A’s and one B on current report card (3rd grade)
  • Excellent with numbers, dates, geography, meteorology
  • Vast knowledge of trains
  • Elected to student council last month.  He tied with another student so a tie-breaker vote was held.  Another tie so they both got in!

With all of the above mentioned, how could I not put my child on that train?

When I say that Tavares is obsessed with trains, I mean just that.  I am not talking about just watching trains, he knows the different types and how they operate.  He knows the parts of a train and terminology.  His interest in trains began around two years ago, and he is determined to attend college to study and become a train engineer.

After looking at routes to other cities in Michigan, we decided to leave the state and spend Christmas Eve in Chicago, IL.

Getting ready to board the train at Chicago's Union Station to return home
Getting ready to board the train at Chicago’s Union Station to return home

By the way, did I mention that my son downloaded the Amtrak app on his iPhone last summer?  And that he knows Amtrak can travel up to 150 mph, but that it wouldn’t travel that fast on our trip?  He also knew that our train would start traveling 110 mph once we got to Kalamazoo, MI.  Don’t ask me how he knew that because I have no clue.

The five-hour and some minutes train ride from Flint, MI to Chicago, IL was wonderful.  Tavares wanted to go to the museum in Chicago so we took a taxi to the Field Museum.  The dinosaur exhibit was awesome, and I had a great time at the Ancient Egypt exhibit.  The tomb and mummies were amazing.

Tavares enjoying himself at the Field Museum in Chicago, IL on Christmas Eve
Tavares enjoying himself at the Field Museum in Chicago, IL on Christmas Eve

We Ubered back to Union Station a few minutes earlier than I originally planned because Tavares knew there was an Amtrak merchandise store located inside of Union Station.  In case you’re wondering, yes he bought something.

While I was driving home that night, my son said, “Mom this was the best Christmas present ever.  And do you know what the best part is?  I got to spend time with you.”

Tears rolled down my face just as they are now.

My son is aware of his health issues and he lets nothing stand in his way while pursuing his goals in life.

I am not going to let anything stand in his way either.

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After we played a couple rounds of Uno, Tavares fell asleep shortly after departing Chicago’s Union Station on our return trip home

Tuberous Sclerosis Global Awareness Day: Denial Ends Here

Today, May 15, is Tuberous Sclerosis Complex (TSC) Global Awareness Day.  And today I come out of complete denial of this rare disease that is affecting the life of my 8 year-old son.  I have always been a private person, but today I’m giving you a rare glimpse inside my personal life.

tscaware3trainthomas      tscaware2traintscaware4trainexpo    tscaware1ball

A few facts about Tuberous Sclerosis Complex (TSC):

  • Tuberous Sclerosis Complex is a rare, genetic disorder that causes tumors to form in vital organs, primarily the brain, heart, kidneys, liver, lung, and skin
  • About 30% of cases are inherited from an affected parent.  The remaining 70% is caused by a gene mutation
  • TSC affects everyone differently.  Some have mild symptoms, others are severe.  Therefore no two stories are alike
  • Around 1 in 6000 babies born are affected by TSC.  More than 50,000 people in the United States have it.  Worldwide, more than 1 million.
  • Behavioral difficulties in TSC can include anxiety, depression, overactivity, restlessness, aggression, temper tantrums (meltdowns), self-injury, social communication difficulties, and sleep problems
  • TSC is the leading cause of epilepsy and autism
  • At least half of individuals with TSC have normal intellectual ability, but may still have difficulties with specific brain skills that can affect daily life functioning
  • Individuals with TSC may have seizures, behavior challenges, developmental delay, and autism
  • Individuals should see a geneticist when first diagnosed.  Other specialties that follow TSC cases are neurology, ophthalmology, cardiology, and nephrology.
  • There is no cure for Tuberous Sclerosis Complex

My son performed age-appropriate activities at first.  He crawled, walked and babbled a few words.  Then my husband and I noticed he went completely nonverbal, and didn’t answer to his name when called.  There was no eye contact.  He also stood close to the tv, and started climbing to high places in the home.  There were other oddities as well.

He was admitted to the Pediatric Intensive Care Unit directly from the pediatrician’s office due to seizures in the waiting room and while being examined.  I didn’t take it well at all being told that my child’s EMG showed seizure activity, and that his head CT scan and MRI both showed brain tumors.  I became so dizzy while the neurologist was talking that I fell from standing back into my chair.

How is my son affected by Tuberous Sclerosis Complex?

  • brain tumors
  • autism (high functioning)
  • behavior challenges, aggressive meltdowns
  • no sense of fear or danger, can’t understand feelings, laughs most of the time when I fuss at or attempt to discipline him
  • renal (kidney) cyst
  • hydronephrosis (fluid on kidneys)
  • hypomelanotic macules – patches of skin lighter than the surrounding skin

My son has come a long way since being diagnosed with TSC at the age of 17 months.  He started attending a special needs school that fall, and was mainstreamed into public school after completing 4 years there.  He regained his speech and is reading at a 3rd grade level (he’s currently in 2nd grade).

My son is also obsessed with trains, geography, and numbers.  Speaking of numbers, I still don’t know how he knows my age and the year I was born, I never told him!

Although it’s a challenge, I wouldn’t trade my son for anything.

For more information on TSC, please visit Tuberous Sclerosis Alliance’s website.  The TSC community is a tight-knit family.  I network with families of TSC worldwide through social media, especially Facebook.  There may even be a state chapter in your area.

Today is Tuberous Sclerosis Complex World Awareness Day.  And today is the day that I end my denial of being the parent of a special needs child.  Up until today, only a select few has known I have a special needs child.  Today, the world will know as I publish this blog post in hopes of helping to spread awareness.

Tuberous Sclerosis Complex.  WE’LL GIVE EVERYTHING.  BUT UP.  That’s the TSC community’s motto, and my family is sticking to it.