Category: The Realism of Autism

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The Special End of the Spectrum… and What the World Doesn’t Believe! By Aiden Zarcone

What is the special end of the spectrum? Why doesn’t the world see anything good about special needs people? There are a lot of questions to challenge the world around us once our eyes are opened to a different perspective. Special needs people are amazingly gifted and talented people that the world just doesn’t value enough because of so many stigmas going around. The truth is, some of the most famous and wealthiest people we don’t realize have Autism and there’s lots of people with Down Syndrome that live very inspirational lives. Therefore, we should not be quick to judge.

 

The Stigma

Our world has accepted today that people with special needs like Autism, Down Syndrome and etc. don’t fit into society and are incapable of things like socialization, decision making, and independence. While life can be challenging for special needs people, this stigma is invalid and they are capable of these goals, normally, with a little assistance. People who make up these stigmas are usually very closed minded. People may have accepted those stigmas in recent years and even today, but they don’t see how people with special needs benefit our world.

 

Examples of How Autism and Others Changed The World

With Autism as one of the biggest voices in learning differences, there are lots of examples of how people with Autism and other differences changed the world. Multi-billionaire founder of SpaceX and big investor in Tesla Motors, Elon Musk, has stated in some interviews that he is on the spectrum. Also, co-founder of Microsoft, Bill Gates, is now a famous business magnate and philanthropist who some people have stated that he quite possibly possesses a lot of autistic traits.

There are plenty of examples of people with Down Syndrome who were famous, but remember, you don’t have to be rich or famous to live an inspiring life in general. Just work hard and be content with what you have.

Lastly, there’s one last person to mention who is on the special end of the spectrum. Can you guess? It’s Aiden Zarcone! He’s started a cocoa company and plans on starting a mobile ice cream shop and using his business as a ministry to serve God and share the Gospel.

 

Conclusion

The special end of the spectrum is the side that the world should value. Instead of stigmatizing people with learning differences, we should celebrate them. Plenty of people with Autism, Down Syndrome, etc. live inspirational lives. Even Aiden plans to start his own business and ministry. If you had a super-ability like Autism, how would you use it? Would you use it to change the world?

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The Unhappy Mother’s Day

May 1992 was my first mother’s day, Randy was born on the 19th, but that one was my first.

My name is Aileen and the day Randy was born was the best day of my life.  I had prayed for years for someone to love me unconditionally, and that day was the day it happened.

Randy had some delays and at 3yrs old, he was diagnosed with autism.  However, that didn’t change him in my eyes.  He was perfect. Aside from colic, he was the happiest, most loving person I have ever known.

He was non-verbal so I never heard, “I love you” or “Momma”.  But, his hugs were serious, he held me so tightly that I literally could not pull away…and I didn’t want to.  He would squeal when he was happy, and giggle and vocalize all the time.  (We called it singing)

He loved watches, trains, planes, music, game shows and cartoons.  His room looks like that of a young boy, with lots of cars, trucks and stuffed animals.

He loved sitcoms too, and we could not eat a meal without the TV being on with his favorite show playing…for the last several months it was According to Jim.

In his room, his TV was always on if he was home.  And for years it was hooked up to a DVD player but last fall we started playing Netflix for him…and lately Scooby Doo was the show that was playing, if it wasn’t Scooby Doo, then it was a music station…and his favorite was a 50’s station.

Through the years we were blessed to have some amazing people working with Randy.  Kizzy, has been a constant in his life for nearly 12 years.  So much so that we called her his “other” mother.

When Randy was 22 he was “aged out” of school and Kizzy worked with him during the day.  It was at this time that I decided that he needed more than just a routine.  He needed something to look forward to, and I was sure there were others like him.   So a friend and I started monthly special needs dances.  This evolved into Able Buddies NC (Buddy is a nickname of Randy’s) a non-profit organization that still hosts monthly dances and will someday provide employment for our special needs community.  My favorite part of the dance was when we would slow dance to the song “Speak Life” at every dance. And I would whisper “I love you, you’re my favorite”.

 

On April 14th Randy was at Kizzy’s house for the evening, and she called me.  She said Randy had a seizure and she called EMS.   My husband and I arrived behind the ambulance.  He was dazed and confused but he seemed okay.  I told him that we were going in the ambulance and that it was going to be okay.   As I helped him outside he wrapped his arms around my neck and had another seizure.   He came out of it and we were able to get him (fighting) onto the stretcher and into the ambulance.

Once we got to the hospital, he had 4 more seizures, all with me holding him and telling him that “Mommy’s here, I love you, Baby”. That last seizure he pulled me to him.   The last one, he stopped breathing.  I stepped out of the room so that the doctor and nurses could work.

The next time that I saw him, he was gone.  I sat on the floor running my fingers through his hair and kissing him, singing and telling him that I love him and that he is my favorite.

The nurse came in and asked if I was interested in organ donation. And I knew that we had to donate what we could, so that his life would be meaningful.

I know that I could be angry, and yes for a few days my faith was almost gone.  But God showed me several blessings that I am grateful for.

Someone had prayed for a miracle…Randy was that miracle.

Randy could have died alone…I was the last face he saw, and the last voice he heard saying that I love him.

He could have been ill…he wasn’t

He could have died a horrible painful death…it was fast…4 hours.

He was with Kizzy, had he been home, he would have been in his room and I would probably not have known about the first seizure.

I was blessed with a happy, unconditional loving, handsome, son for nearly 28 years.

And my sweet baby boy, died a hero.

His funeral was the 2nd worst day of my life.  Randy was my world and I am so lost without him.   I feel like I have traded the “autism mom” club for the “bereaved mother” club.

 

I leave his TV on if I am home, and I sleep in his bed cuddled up to one of his favorite stuffed Cliffords.  I can’t go to sleep without telling him “Good night Buddy, I love you” . I still have a folded pair of his jeans sitting on my couch that I cannot put away and we still turn on According to Jim when eating .

Tomorrow is Mother’s Day and I am dreading it.  I am not a mother anymore.

So hug your babies, no matter how old they are, be sure that they know that you love them.

Thank you for listening.

Sincerely,

Randy’s Mom

 

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Welcome to the Special Needs Parent Club!

Welcome to the club
Enjoy your complimentary membership to the Special Needs Parent Club!
Okay, I was going to write something humorously, thought provoking, but you know what?  I can’t.
Over the weekend I read a Facebook post from my cousin and fellow SN Mom, stating how she has repeatedly told her limited friends and family that she is unable to be the social butterfly that they would like for her to be.  She said that since she keeps repeating herself, that she was going to post it for everyone, and maybe they would finally understand.
She said that being a Special Needs Mom, takes up all of her time, especially since she also has a neurotypical teenage daughter.  There are Dr.’s appointments, therapy sessions, meetings, as well as her daughter’s extra curricular activities and on top of all this, she is a single mom.  So she is trying to juggle work, the lifestyle of having a child that needs more attention, making sure that her daughter doesn’t feel ignored or neglected, trying to add some balance and do creative and fun family activities as well.  (all of which she is doing wonderfully)  She just doesn’t have time or energy to meet up with the girls, or hang out with the gang.
The comments to her post were very supportive, and I discovered that several  of these people are not only SN parents, but they are all sitting on a branch of my very own family tree.   I commented to one cousin “I didn’t know you were in the club!”
It’s a club we didn’t want to join, but here we are.   Yes, there are a lot of benefits of this membership, but honestly, there is a heavy price that comes with it.
I can’t tell you what it’s like to have a full week of restful sleep.   Even if Buddy has a wonderful night of sleep, I have another night of light sleep,  always keeping an ear out, for doors opening, or tv’s turning on.
I don’t think I have ever left a IEP without tears and disappointment.
I jokingly say that I can change a diaper blindfolded…because I have been “diapering” for almost 27 years.
My son can’t verbally tell me that he doesn’t feel well, or he needs something …or that he loves me.
Buddy will live with me most, if not all of his life.
I have mountains of laundry…clean and dirty.  If you are looking for it, it is either, in the pile of dirty laundry,  in the process of washing or in the pile of clean laundry.   I cannot tell you how many pairs of jeans  Buddy has, or how many blankets he has.  But it seems like I am always buying more.
Sounds like a pretty steep  price to pay doesn’t it?
But what I get in return is so much more.
Last night my 26 year old son, not only slept safely in his room next to mine, but as I was getting him ready to tuck in, he stood up, smiled and grabbed me, pulling me to him, pushing my head to his shoulder and he proceeded to hug me for a good 5 minutes.  Now this made me think of 2 things.  1. he is trying to outsmart me with this distraction, so that I won’t turn off his TV yet….or 2. he is showing me that he loves me…honestly, I think it was both.
Even though the IEPs were often brutal, the meetings that he has now that he is an adult are so much more optimistic and productive.  I actually look forward to seeing the goals that he has met and how we can take the next steps.
Although I am certainly not fond of the diapering part, I do like that my son still needs me.  Not in a “Mom, can I borrow the car” way…but in a “My well being depends on you” way.
No, Buddy can’t verbally tell me something, but he and I have figured each other out and we communicate in our own way.  He knows that he can come to me, and I will figure out what he needs or wants.
The laundry situation isn’t so bad either…he always has fresh linens on his bed, clean clothes and that pile of clean clothes keeps the dogs off my couch.
Oh, and the very best perk of this club… Love, the purest most unconditional love you can ever imagine.  Call me selfish, but I like knowing that he will never love anyone more than he loves me…and the feeling is mutual.
If you asked me 27 years ago if this would be how I pictured my life, and if I would be happy with it….honestly, I would have said no.  If you had asked me when Buddy was diagnosed with autism at the age of 3,  is this how I  pictured my life, and if I would be happy with it… I’m not sure…I imagined it to be much worse.   If you ask me today???
I am very happy with my life. Do I wish that my only child could one day make me a grandmother?  Yes.   Do I wish that my hubby and I could pack up on a whim and go away for the weekend…yeah, it would be nice.  But most of my life’s accomplishments happened because I have and I am, trying to make a better life for my son and those like him.
And this is just the beginning!
~ASM