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?

GRACE & SPACE 

Earlier this week I took my boys to the playground. My two year old, Liam, is fearless and climbs, jumps and hurls himself around without a care in the world. My ten year old, Corbin, is much more cautious but equally busy, while my 12 year old is more reserved.. As I split my attention between them I was picking up on the distress of the Mom next to me. Her daughter was also 2 years old, fearless and busy as can be. Mom tried to safeguard but her busy little bee was obstinate and curious, never once caring to ensure that Mom could take a breath. I watched her try to lead her daughter into typical play, and I smiled at how strong and independent her little one was. It’s a personality trait I’ve come to know well. Afterall, I have three little boys who each march to the beat of their own little drummers, never much caring what society, or Mom, thinks they should be doing.

The Mom was exasperated and worried, but she lit up when the little girl offered my son her toy. Liam flitted off disinterested in the gesture and the Mom said “oh, I wish he would have taken it. She doesn’t usually engage with other kids.” I smiled and started a friendly conversation. She began to tell me how her daughter is in speech therapy, isn’t talking much and then she said her doctor wanted her to schedule an autism evaluation. I was about to mention that my sons are autistic, and that my 2 year old is also in speech therapy, and that he is also being evaluated for autism spectrum disorder, but I paused. I paused and reminded myself of what it feels like the first time a doctor says that to you. I remembered what it feels like to meet non-speaking ten year olds when your child is 2 and in that moment the scariest feeling in the world is “What if they never speak?” I remembered the rawness of my first steps along Corbin’s autism journey, and the fear of the unknown swallowing me whole. The mom continued “of course it doesn’t matter if she is. We just want to offer her whatever support she needs” the Mom continued to self-soothe as she shared with me how much she just wants her daughter to be okay, and she doesn’t care about a “label.”

I never told her that I had stood in her shoes. I never told her about where I stand now. I didn’t say “it’s easier the second time” or “there’s worse things than not speaking.” I didn’t say “it gets harder but you get stronger.” I didn’t tell her how it’s not at all just a label, it’s a lifestyle, and you will never ever have the life you imagined. You will fight and cry for that life. You will grieve and a piece of you will die, and then you will open your eyes and begin to embrace the life you have, with the child you love. You will move heaven and earth for your child, and they will silently wait for you to stop, let it all go, and walk this windy road beside them.

I didn’t say anything because I remembered what I needed most when we were embarking on our autism journey. I needed grace and space. I needed to think about it wrong, and self-correct. I needed to embrace it, deny it, get angry, and confused. I needed to be allowed to wish it wasn’t so, and then find ways to say it was good. I needed to tell strangers at the playground that everything was going to be okay. I needed to find a way to be where I was when I wasn’t ready to be there, and I didn’t know what I needed to do, or how I was going to do it right. I needed to be allowed to do it wrong. I needed to battle with regret. I needed to break.

I watched this mom cracking, and I told her how beautiful and curious her daughter was. I asked if she was always such a leader. Mom said yes, it was her favorite thing about her. We talked about her stubbornness and praised it. I asked how does she understand her daughter if she can’t talk? This was always my favorite question to answer. I would love to share about our secret language and how we never missed a beat. This mom told me all about how her daughter is so creative in getting her attention and her needs met. Mom began to relax as her fearless, creative leader commanded the playground.

There’s a lot of books, blogs, and opinions out there for moms raising children with special needs. Some are helpful, some are condemning, and others are overwhelming. I am mindful of how I try to “help” others because I’ve often found the help to add to the chaos.

I have two son’s diagnosed with autism, and recently a doctor suggested we do an autism eval for my youngest son, after his 2 year old well-visit. I’ve been processing this in all the ways a mother does, but there’s something unique this time.

Corbin is 10 years old, nonspeaking, and diagnosed with severe autism. I’ll be honest, when he was Liam’s age, the thought of him not speaking at 10, or having the challenges, and disabilities he has today were my greatest fear. I fought hard to ensure we gave him every advantage to make sure this wouldn’t happen. And yet, here we are, and every morning I wake up with so much joy and gratitude for the life I once feared. I have embraced the fear. I’ve snuggled it, and kissed it’s dirty forehead. I have played with it and tickled its feet. I am not afraid of it.

I hope Liam speaks, and I hope life comes easy for him. I hope he doesn’t have to endure the challenges that Corbin does, because they’re hard, and they require an enormous amount of energy from both Corbin and those who love him. That being said…I’m not afraid. Autism doesn’t scare me anymore. It’s no longer the unknown. We’ve danced in the abyss and lived to blog about it.

I know that I need grace and space to find my footing here. I know that Liam needs the same. I know that every mom who hears the word autism at their two year olds well visit needs to be able to fumble through their darkest fears and find their feet beneath them, and realize they’re okay. I know that sometimes while they’re doing that they may say or think the wrong thing. They may make mistakes, have regrets, and negatively affect their children and themselves in the process. I know this is the journey, and I’m not afraid of the mistakes I’ll make this time. I’m not afraid of the passing thoughts and feelings that I don’t know how to integrate. I know it’s all happening for me. I know that with every smile and tear Liam’s mother is being made. I’m not mad at myself for not being what he might need tomorrow. I am proud of myself for being what he needs today.

Dear Mom on the Playground,

 For a moment I got to watch your painful becoming, and it was beautiful. You are beautiful. Your daughter is beautiful. I see your future, and it is beautiful.

You are not alone,

Janaiah

Politically Correct Autism

I have been an autism mom for nearly 27 years now.  Lots of things have changed in the autism world during that last quarter of a century.

When Buddy was newly diagnosed, I went to the grocery store and outside was an older gentleman collecting donations for the Knights of Columbus.  His sign read something to the effect of “Helping  Retarded Children”.  As I dropped some change into the donation can, I thanked the man for collecting money to help children like my son, but I also told him that they needed to change the wording.

Today, I saw a similar gentleman…his vest now reads “Helping People with Intellectual Disabilities”
I have been told that by saying my son has “special needs” I am using the incorrect term.  But I prefer that over Intellectual Disability, because to me, disabled means broken.  When you disable a bomb…you make it useless and inoperable.  My son is not inoperable or useless…he just needs accommodations.
When he was first diagnosed, his first diagnosis was PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified).  Although it fell under the “Umbrella of Autism Spectrum Disorders”, Autism wasn’t his diagnosis.  Then as he got older it was changed to Mental Retardation.  (that one stings, and I hated seeing it on his IEP’s)  Now, as an adult, he has Autism.
Several years ago Autism Speaks started a campaign that used a puzzle piece and a light bulb with the color blue.  Today that’s controversial because Autism Speaks misused donations.  This year there is a new symbol and color to represent Autism Awareness.  Now it is an infinity symbol and the color red.
Recently I have noticed that many autistic bloggers are stressing that it should be Autism Acceptance over Autism Awareness.
One lovely young lady that I follow, posts in her blogs that she is not a puzzle piece or an infinity symbol.  And she also says that we need acceptance, not just awareness.  I certainly respect her opinion and point of view.
My point being; this is Autism Awareness Month,  does it really matter what color we wear, or symbol we have on our car or tattoo’d over our heart?   What really matters is that we NEVER stop talking about it.
If we are focused on the politically correct terms, symbols or colors, we are missing the point…and we will be afraid to talk about it…. so, put on your blue and red,  stick your puzzle infinity stickers on your window, and start a conversation!
~ASM