Tag Archives: special needs

How I Handle the C Word, Plan to Handle the B Word, and Will Never Handle the S Word

I know the title is long, but I tried to shorten it.  Well, I didn’t try at all, but I thought about it for a quick second.  However, this blog post will be short and to the point.

How I handle the C word
No mother wants to be told that her child has cancer.  Two weeks before my son’s 11th birthday back in June, I learned that what was thought to be a bruise on his leg from falling while running was actually a mass.  A tumor.  Osteosarcoma.  So just how in the hell am I supposed to handle the fact (according to biopsy report) that my child has bone cancer?  That my child has to undergo intense chemotherapy-surgery-chemotherapy treatment over the next few months?  Each chemo admission ranges 2-5 days in the hospital.  On top of all that, my son is already special needs.  He has a rare condition called Tuberous Sclerosis Complex (TSC) and a multitude of other health issues.

My son and I don’t like saying the word cancer, so we say C word instead.  He also says tumor while I say osteo.  Sometimes we don’t say anything at all.  So how am I handling it?  Let’s just say that I’m handling it, that I’ve come a long way since being told the heartbreaking news.

My son standing next to a locomotive at Greenfield Village in Dearborn, Michigan last month. He is train obsessed.

How I plan to handle the B Word
I should have typed word in plural form because this section actually consists of two B words.

The first word is book.  I wrote my first book, Leaving the Hidden Path:  Guidance for Women with Young Kids Considering Divorce.  My original plan was to launch it on August 15th which will be 1 year since my divorce.  All hell broke loose when I learned of my son’s life threatening illness, so I had to put my writing aside for a minute.  I am now making plans to release the book in September.

Now for the second B word.  Let’s see if you can guess the word by looking at the gorgeous lady in the picture below.

Okay, so the gorgeous lady is me.  I am very self-confident so I will always call myself beautiful, gorgeous, pretty, and sexy.  I was having a bad day last year so I called one of my best friends and burst out crying as soon as he answered the phone.  After telling him what was going on, he suggested I get a Bad Bitch shirt  made.  Bad bitch?  I rarely say bad words but it sound like a good idea, so I went to the mall and had the shirt made.  Some people like to mistake a person’s kindness for weakness.  Sometimes you overlook it, but when you don’t, well that’s when you become a bitch.  So I had to learn how to become a bad bitch.  Don’t worry, I’m only one when necessary, lol.

My book’s target audience is women with minor children considering divorce, and it contains examples from my personal life.  That’s where the bitch part comes to play.  I am already anticipating being called that and plenty of other things when I release the book.  But hey, I helped myself out of a situation, and now I want to help other women who may be in the same boat.  Getting called a bitch, or bad bitch, is okay.  It is not the first time I’ve been called one, and I guarantee you it won’t be the last.

How I will never handle the S word
Maintaining my sanity is a bit tricky.  A special needs child newly diagnosed with osteosarcoma (bone cancer) in addition to a long list of other health concerns.  A book about divorce that I plan to launch in September.  Oh yeah, I forgot to mention that a fundraiser is being planned by my ex-husband’s co-workers for our son for next month.  I am still releasing my book next month.  Chaos, chaos, chaos.

The average mom wouldn’t even be able to handle half of what I have been through, and still going through.  But will I ever handle the S word, or my sanity though?  I have no idea.  Some might call me crazy, others will call me supermom or superwoman.  Only time will tell.  But right now, time is telling me to be that bad bitch!

Oops!  I said this blog post would be short didn’t I?  Anyway, I hope you enjoyed this random post as much as I enjoyed typing it.  I just wanted to blow off some steam.

 

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.

I Prefer Autism Over Normal Anytime

BEWARE:  I am in full rant mode right now, and my tongue is explosive.  No holds barred.  Anything goes.  Consider yourself warned.

Last week I worked as a substitute in an autistic classroom, at a school for special needs, of adult students ages 20-26.  Their speech levels ranged from nonverbal to hyperverbal.  Before I left the building for the day, I decided that I would prefer to associate myself with people in the special needs community, especially autism, over the so-called normal people anytime.

Special:  Unusual, unique, exceptional, better.  In other words, different from the usual. 

Normal:  Typical, standard, or what’s expected

So why would I prefer autism over normal?  Well, the entire time that I was inside the school, not just in the classroom, but as I walked through the building interacting with other staff and students:

  • I didn’t see or hear anyone poke fun at someone else
  • There was no gossiping
  • There were no cliques
  • I didn’t hear the ‘R’ word (retarded is not in my household’s vocabulary)
  • Everyone minded their own business
  • Intelligent conversations
  • Extremely smart
  • Problem solvers

So how does that compare to so-called normal people?  Come on now, do I really need to go there?  Since this is a ranting blog post, I’m definitely going there.

As I look back over my K-12 school years, college, and now the workplace, I can see why special needs is called just that, special.  Look at my bulleted list above.  Isn’t that amazing?

Now let’s take a look at my list of qualities of a normal person.

  • Gossip
  • Cliques
  • Ridicule
  • Belittle
  • Hatred
  • Envy
  • Prejudice
  • Discrimination
  • Greed
  • Arrogance
  • Corruption

This list is nowhere near finished, but I just got home from work and I’m tired.  Otherwise, I would type until my fingers get numb.

Can you see why I prefer to associate myself with autistic individuals?  There was a hyperverbal student with a superhero obsession.  For those of you who don’t know, I’m a lifelong comic book nerd, so I was excited to talk with him.  But what I didn’t know was that he was allowed to talk about superheroes at snack time only.  He knew it, but as one of the other teachers said, “They know the new people!”

The students made Valentine’s Day cards.  The handwriting of one of the students’ was perfect, as if she used a ruler and a stencil.  Everything on the inside and outside of that card was positioned perfectly.

I would go on with my bragging about the students at that school, but I don’t want to make us normal people jealous.

My 8 year-old son is a special needs child.  He has a rare condition called Tuberous Sclerosis Complex (TSC).  Those with the disease have a range of issues, including autism.

My son is also autistic.  At one point he lost his speech, but he regained it a few years later.  I met several students at that school, that reminded me of my son.  He is verbal, loud, make sounds, has behavior challenges, and other issues.  But, my son is intelligent.  His obsessions are trains, geography, and numbers (including dates and years).

My son also holds mature and highly intelligent conversations.  Last school year, I closely observed his interaction with one of his classmates at the bus stop every morning.  He eventually stopped talking to that child, because his responses weren’t good enough for my son.  He’s like that with adults too.  If you can’t hold a mature and intelligent conversation, then he will have nothing to do with you.

I kept to myself when I was in school.  I was on the honor roll, and I participated in sports and other activities.  I was quiet and shy.  I had specialty classes in math and science, and most of the students I associated with, when I did talk, were quiet in nature like myself.  No gossiping.  No poking fun at others.  No cliques.  No jealousy.  Intelligent conversations.  We minded our own business.

Hmmm, am I special?  I don’t know, but with the definitions I provided above, and all the smack I ranted about in this blog post, I would say that I am special.  And guess what?  I don’t care.

 

 

 

Wanted: Someone To Be Me For A Day

Here is my job posting to be me for a day.

JOB TITLE:  Superwoman

JOB DESCRIPTION: 

  • Wake up at 6 a.m. to get middle schooler up and ready for school.  (sometimes it’s a hassle because he likes to keep sleeping and will expect you to be the snooze on his alarm clock).  You’ll have to fuss at him to get off the 3DS, iPhone, and to tie his shoes (they always come unlaced).
  • Once the middle schooler leaves, prepare to get the 8 yr-old up and ready for school.  He is a special needs child, so getting him ready is a major chore.  Be ready to dress him while his eyes are focused on PBS Sprout channel.  He may also have a meltdown at the last-minute, when it’s time to leave for maybe even the smallest thing.
  • Sleep a couple of hours or run errands until time to get ready for work.  12-hour shifts 1p-1:30a.
  • If you don’t run errands on the day you work, then cook dinner and wash a load (or two if you have time) of dirty laundry before you leave for work.
  • If you don’t work that day, work on the to-do list (errands, phone calls, shopping, etc.)
  • Check on my brother at the nursing home.  I’m his legal guardian so you may be given decision-making questions/ideas either by phone or while you’re at the nursing home.  Be prepared for his smart mouth.  He is paralyzed from MS (Multiple Sclerosis), and the only thing that he can pretty much move on his own is that sharp tongue of his.
  • If you’re working that day, squeeze in a 10-15 minute nap before showering.  You’re going to need it because you will be working in an Emergency Department at a level 1 trauma center.
  • If you’re not working, be prepared to hear the middle schooler run his mouth when he gets home from school about what you cooked.  You’ll have to fuss that he can’t always have fast/fried foods.

QUALIFICATIONS:

  • Must have patience
  • Must be willing to work with special needs child
  • Must be able to multi-task, take constructive criticism, and not take mess off anyone at work
  • Must know how to cook
  • Must have conflict resolution skills (the boys fight every night.  The youngest is very aggressive and violent most of the time)
  • Must be able to get by with no more than 3-4 hours of sleep in a 24-hour period
  • Must be a quick thinker and problem solver, especially if the school calls because the youngest is having a meltdown.  You may be told to pick him up.  If you’re at work, prepare to leave right away or call around and find someone to go up to the school.

SALARY:  You will be generously rewarded with excessive fatigue, throbbing headache, back talk, and little to no sleep.

HOW TO APPLY:  Applications are being accepted at the homes of women with a full-time job (and part-time if she has one like me), and special needs child(ren).  That way, in case you don’t live in Michigan, at least someone will be able to take a well deserved break. Applications accepted worldwide.

APPLICATION DEADLINE:  There will never be a deadline.

Remember the errands I mentioned?  Well this is my errand for the day, writing this blog post.  Now it’s time for me to rush and jump in the shower to start my 12-hour shift.  Oh yeah, and remember the part-time job?  I already worked one of them at the elementary school earlier this morning.

Please apply soon.  There are plenty of superwomen, like myself, that needs you.