Blog #240: Lunch Bunch

No, you are not looking at a revival of “The Brady Bunch.” You see, there is a different kind of bunch that proved to be a helpful coping skill for me during my middle school years that I think a lot of schools should really take into consideration.

It’s called “Lunch Bunch” and I used this type of lunch when I was in Middle School to avoid the chaos that was the school cafeteria. Several other students who and I were sensory friendly would eat in the classroom with our homebase teacher and have a conversation that would be the only one in the entire setting.

Why did I find this to be beneficial? Well, “Lunch Bunch” was sort of a sensory escape for me, away from the cafeteria.

In my previous blog, I talked about how eating lunch during my middle school years would prove to be sensory overloading because of the fact that it would not only be loud, but also, I would have to deal with angry principals and lunch monitors that would sometimes enforce “silent lunches” if the cafeteria got out of hand.

Coach Bradley Buzzcut from “Beavis and Butthead.”

When discussing this issue with my psychologist yesterday, she was telling of a story where she actually got detention for merely mouthing a word during a silent lunch and another case where a gym teacher who was acting as lunch monitor blew a whistle so loud in the cafeteria that it drove one person that sees her to tears.

I mean, who wants to be subjected to that kind of environment? Not me, the former special education student and certainly not the current special education student. The combination of the loud noise level, plus angry lunch monitors is a sensory overload or overstimulation just waiting to happen and if it does happen, then the adults in the cafeteria would be the ones responsible.

This is why schools need to consider something like a lunch bunch that would be a quiet and controlled environment for sensory friendly students to eat in peace. But most importantly, is that something like a lunch bunch builds bridges, not just with students, but also with teachers and even administrators.

By having a “lunch bunch,” teachers and students can get to know each other on a personal level and learn something about each other that they may not have known otherwise.

Best of all, they do it in a quiet environment where something like “silent lunches” do not need to be used. You could have the entire cafeteria be in a “silent lunch” and the only conversations going on would be in that small lunchroom setting. Clearly, the benefits outweigh the risks in this matter and would do good the mental health of both students and teachers/administrators.

Catch you all later!!

Blog #239: Silent Lunches and Alternative Lunchroom Settings for Neurodiverse Students

One of the most dreaded aspects of the school day for a neurodiverse or sensory friendly student is sometimes not the classroom itself, but the cafeteria. Being forced to sit and eat lunch with classmates you don’t even talk to can be extremely nerve-wracking and even upsetting to an extent.

What’s more is that when you are in the cafeteria, you are subjected to being forced to partake in what is known as a “silent lunch” if the students around you get too loud.

This was especially true for me in Middle School and as a result, I had to endure being punished with the rest of my class with the screaming of the principals and the lunch monitors on duty. It was very uncomfortable and upsetting for me, but I had to keep my mental mask on to avoid getting unwanted attention from them.

Recently, it was brought to my attention that some schools have what is known as a talk light, which is like a traffic light that you see on the roads. When the light reaches red, it makes a noise that signals for the students to quiet down.

Personally, I’m grateful that they didn’t have this when I was in school because this type of system would have only INCREASED my anxiety even further. If you are in a school that has this kind of system, then I would strongly recommend finding an alternative lunchroom setting for your students that are sensory friendly or neurodiverse.

However, I was very fortunate that two days a week (later three days a week), I was given the alternative setting to eat lunch in the classroom, away from the madness of the cafeteria. Personally, I found this to be extremely helpful, especially if I was having a stressful day to begin with.

Now, all of this happened during my years in Middle School from 2000-2003, but depending on where the student lives and goes to school, it can happen anywhere. Most of the time, a lot of loud cafeteria calling outs and uncomfortable “silent lunches” happen in Elementary School and Middle School and very rarely in High School.

Hell, we were free to socialize however we wanted to and on somedays, we would even watch “The Price is Right” with Bob Barker if were having lunch around the time it was on, regardless of noise levels.

Still, a lot of sensory friendly and neurodiverse students cannot stand being in the cafeteria because of the sensory overloads that come out of it.

If schools are looking for alternative lunch methods for the student, then one of the things that can be done is the student or students can have lunch in the classroom or even in the teacher’s lounge.

Again, having private moments with my teachers and even administrators such as having lunch with them helped me not only take the edge off, but also allowed me to find my core audience for my self-advocacy and public speaking.

One of thing that I would try and see more of is school districts being more flexible to students that are uncomfortable with eating in the cafeteria. Let’s face it, we all want to eat in peace and decompress after a busy and sometimes anxiety provoking day. And we should get that option as sensory friendly individuals because remember, we have our own mental health and well-being to take care of.

Like all the other areas I am approaching (school safety drills, assemblies, etc.), I might end up creating a presentation about this at some point down the road to present at trainings and conferences. I think teachers and administrators can really benefit from what I have to say to regarding this issue.

Catch you all later!!

Blog #238: “Going the Distance” and The Growing State of Florida

What is it about Florida? Is it the theme parks? Is it the beaches? Or is it the accessibility support that makes it unique from other states?

Either way, Florida has become a huge part of “Going the Distance” in recent months. I think it could be because of the fact that Florida has a strong awareness to disabled by the sheer number of disability and neurodiverse organization that are in the state. Already, I am affiliated with one organization, the Unicorn Children’s Foundation in Boca Raton, and already have one foot in the door with another, the Ernie Els foundation in Jupiter.

You might say that being affiliated with one organization is enough for me. But there is always room for growth within the state. Many businesses have made their corporate headquarters in Florida and while “Going the Distance” is not directly headquartered in Florida, it’s footprint is getting deeper and deeper by the day.

Now, when it comes to Florida, I’d like to picture it as something like Walt Disney World. Each area of the state is like one of the many theme parks of the resort:

A. Central Florida including the cities of Orlando and Tampa is represented by Main Street and the Magic Kingdom, respectively.

B. Southern Florida including the cities of Miami, Fort Lauderdale, West Palm Beach, Fort Myers, etc. is represented by EPCOT.

C. Northern Florida including the cities of Jacksonville, Gainesville, etc. represent Disney Hollywood Studios.

D. The Florida Panhandle including the cities of Panama City, Tallahassee and Pensacola are represented by Disney’s Animal Kingdom.

So, as you can see, I have my map of Florida clearly marked and if there is one thing that the state is good at is supporting those with disabilities. While my primary west coast partner Autism Tree Project Foundation has California sewn up covering the cities of San Diego, Los Angeles (to an extent) and San Francisco, Florida is considered an evolving goldmine with numerous disability and neurodiversity organizations eager for advocates like myself to make their mark.

But that doesn’t mean the other states in the United States are good. Each one is unique in terms of disability services and it’s always a good idea to have an open mind to see what state has to offer.

At “Going the Distance,” it’s a good idea to learn from other organizations from other states and see what they have to offer. I cannot empathize that enough despite what other people say.

Hopefully, if God is willing, I look to expand outside the United States and work with disability and neurodiversity organizations overseas. Until then, I’ll just be working with what I have in front of me right now.

Catch you all later!!

Blog #237: Why a “Grand Reopening” Sometimes isn’t Worth Working On If You Want to Focus on Your Mental Health

I’m pretty sure many of us experience this on a frequent basis, but you have a schedule set in your mind and all of a sudden, your boss or supervisor approaches you to work extra hours for a variety of reasons (either because the original schedulee had something else come up) or because they need extra help for a company related activity such as a higher up visit.

Recently, this was brought up to my attention as my day job is holding a “grand reopening” next Friday and my manager was trying to recruit me to work several extra days.

Normally, I wouldn’t mind taking them as a way of getting extra money towards the operations of “Going the Distance,” but given the events of recent such as the death of my friend/colleague and brother figure, David Sharif, as well as my recent talk at the Florida APSE conference in Jacksonville, I had to respectfully turn down any extra days.

You see, this is a situation where getting extra work days isn’t worth it. If you recall last year, I talked about people going unnecessarily bananas over company visits. I’m pretty sure that in this case, the higher ups will understand that the best worker may have to step back for their own mental health.

At my day job, I have been lucky to have made several close connections with the higher ups. Hell, I’ve known our current regional vice president for 12 years and we have a good working relationship (plus, we can relate as my own father was a vice president of operations for Sensata Technologies for 35 years).

I can assure you that the higher ups, no matter how high they are over you, are human just like everybody else out there. If they were in the position that I am in, they would do the same thing. A Grand Reopening is just that, a “Grand Reopening” and sometimes people will want to work it or avoid it altogether to avoid any unwanted stress and pressure.

Just because someone within your organization wants to put pressure on you to make themselves look good for the higher up, doesn’t mean that you have to participate in the madness. Sure, it’s the nature of the business or the industry, but still.

I’ve always said that being flexible is a survival skill that we need not just in the workplace, but in our everyday lives. But, if those extra hours that your place of employment wants you to work are not good for your mental health, then you have to speak up. They may throw a temper tantrum about it, but that’s their problem and not yours.

Finally, if you have a strong relationship with the higherups like I do, they know you are a capable and hard worker and will agree with you that you need to put your mental health first and foremost over a “grand reopening.”

Although, for some workers who are lazy, maybe they need to have that pressure put on them by working extra hours against their own will. Something like a “grand reopening” is nothing more than a chance for those who are lazy to fight for their jobs and prove not just their employers wrong, but the company higher ups as well.

If you want a visual example of a “grand reopening” from an autistic/neurodiverse point of view, watch this Thomas the Tank Engine Season 5 episode about the character of Gordon.

At “Going the Distance,” I feel that it is my duty as a self-advocate who is neurodiverse and struggles with mental health issues at times, to come forward and say that it is okay to say “no” when it comes to working for specific company events or functions like a “grand reopening.”

When I first started becoming more self-aware of my mental health nearly five years ago, I had the realization that there are plenty of others who still haven’t found their own self-awareness and thus, need that extra nudge to get them to stand up for themselves.

Money isn’t everything and Mental Health is everything. Money is just the gas that goes into your car, home or own self-business. It can be replaced, the mental health of a person who is a loyal worker like me cannot.

I am now telling myself that there are going to be plenty of company events in the future that I can help out with, but this is one where I need to step back and get my mental health under control.

Catch you all later!!

Blog #236: What Happens When You Get In the Wrong Uber/Lyft as a Neurodiverse Individual?

In life, there is nothing scarier than putting yourself in a situation that you couldn’t escape from. As a neurodiverse individual who travels as part of a self-employed business, I always keep in the back of my mind that my own personal safety should always be at the forefront if I experience something that is anxiety provoking.

This was the case last week when I flew down to Jacksonville for a speaking engagement for the Florida Association for People Supporting Employment conference. It was a combination of impatience and exhaustion, but I seemingly got in the wrong Lyft ride that ended up taking me to different places throughout Jacksonville including downtown, St. Vincent’s, etc.

Thankfully, my dad was with me as a result of my recent mental health struggles with all that had been going on. Still, I could tell that something was not right when we were driving from the airport. Eventually, I realized what we had done and we asked the driver (who spoke very little English) where we were going and it was then that I knew we were in the wrong car.

I got to tell you that I almost had an anxiety attack as a result of what happened and with all that had been happening to me lately, this was the LAST thing I wanted to have happen.

Now, this was perhaps the first mental mistake I had done in my travels (hey, nobody’s perfect). I’m usually very good and responsible when it comes to being careful and looking out for the right rideshare vehicle. I hold a very high standard when it comes to using various forms of travel and for some reason, my standards dropped that day.

In this case, however, this was a combination of the aforementioned impatience and exhaustion as well as the activity of the airport rideshare areas.

Although, I will admit that getting a rideshare at an airport is easier at some airports, but in this case, the license plates of the car were in the rear and in Florida, all license plates are required to be in the back and not in the front. Although, I will admit that in some of my travels to Florida (where a majority of my customers are based in), some of the license plates have been on the front of the cars, which is helpful to someone like me.

So, as a neurodiverse entrepreneur, how do I rectify the fact that this doesn’t happen to me again?

For one thing, I start being more scrutinizing when it comes to looking for the right rideshare car. I’ve always looked for the correct license plate and from now on, I look at the back as well as the front. Remember that not all states, including Florida, have the option of putting license plates on the front of the car.

There is also the matter of staying near the airport. In the past, I have stayed near the airport closest to my customer and I have found that I can better track down a rideshare from the outer lobby of a hotel than a large airport. I’ve found that staying at the airport is a lot easier than I thought in more ways than one.

Another thing that I am going to start doing is double confirming my rides by calling the driver to tell him or her where I am located. Bear in mind also that not all drivers can speak good English and be prepared for language barriers.

But if you are one of those parents or guardians that frequently worries about your neurodiverse child’s safety and well-being like mine, you can always schedule a limo service or if the child or loved one is flying to a destination where they have family or friends that live in the area, have them be the ones to drive to and from the airport.

I get the fact that we are all not perfect, but there are certain things as frightening as getting into the wrong rideshare. You can rest assure that something like this will not happen again at “Going the Distance.”

Catch you all later!!

“The Man Behind the Curtain: A DEI Discussion” at the 4th Annual Florida Association for People Supporting Employment Conference on Friday May 6th, 2022

Photos taken from my presentation of “The Man Behind the Curtain” at the 4th Annual Florida Association for People Supporting Employment Conference on Friday May 6th, 2022 at the Sawgrass Marriott in Ponte Vedra Beach, FL.

Heading to Rhode Island TF Green International Airport
American Airlines Check in at Rhode Island TF Green International Airport
Yes, I did have my wingman with me
Leg #1: American 1703 to Charlotte, NC
Climbing out of Providence (Flight was delayed 1 hour due to rejected takeoff and a frazed nerve passenger)
Landing in Charlotte 1 hour late
Leg #2: American 772 to Jacksonville, FL
Climbing out of Charlotte
Landing in Jacksonville
Collecting the Gear
Staying at the Sawgrass Marriott Resort
Heading down to the Conference Social
My wingman with Florida APSE board member and Els for Autism Foundation Advisory Board Member, Merrick Egber
Royal DJ’s providing the entertainment
Me and Unicorn Children’s Foundation CEO Sharon Alexander with one of the latest recipients of a signed copy of “This is Autism,” Julie Christenson
Me with Florida APSE President, Dr. Kerri Morse and Unicorn Children’s Foundation CEO Sharon Alexander representing #TeamUnicorn in Ponte Vedra Beach
Heading down to present and then head for Jacksonville International Airport
Gotta have my Starbucks
My wingman with Florida APSE board member, France Mason
Showtime…
Presenting the segment on “What is Autism?” via the cartoon, “Pablo.”
As usual, what a great audience with 30 to 40 people participating
My co-presenter for this session was Allison Fogarty of “Doggy Delights with Allison.”
Chatting with Pat Fogerty, Allison’s mom and co-founder of “Doggy Delights with Allison”
American Airlines Check in at Jacksonville International Airport
Leg #1: American 2463 to Charlotte, NC
Climbing out of Jacksonville
Landing in Charlotte
Leg #2: American 5222 to Providence, RI
Climbing out of Charlotte (this was taken before Severe Thunderstorms hit the Charlotte metro area)
Landing in Providence (flying over my day job)
Collecting the Gear
End of Conference

Blog #235: Carrying on a Legacy

When someone you are close to passes from this life into the next, he or she leaves behind something that makes them who they are as souls. That, my friends, is called a legacy.

With David Sharif now gone, the autism/neurodiversity community now has to carry on his legacy. But it will certainly not be an easy one. Many of us, myself included, would much rather have David back but it just will not happen.

What David had left us was an impact in the community that may not nor will ever be duplicated. Carrying on someone else’s legacy is to be handled with great care and precision. This is the case with not just a death, but also something like a resignation or a retirement, which occurs on a frequent basis at least once in our lifetimes.

The fact of the matter is that we cannot go on forever and when our time comes, no matter how old we are, we are to be prepared to carry on the mantle of someone and their work.

Due to his death, David left many works and goals unfinished and now it’s up to us, the autism/neurodiversity community, to pick up where he left off. But most importantly, he left us a legacy that we have to carry on as a community.

Of course, when a community member dies or retires, we may not want to carry on that member’s legacy because we would much rather have he or she doing it or we say we are not ready to carry on that legacy. But, it’s important to start preparing now to carry on a person’s legacy.

The more your successor does to prepare to carry on your or someone else’s legacy, the better the transition will be when the time comes. David left a lot of successors to carry on his work and now, we must get to work picking up where he left off.

Catch you all later!!

Blog #234: The Grieving Process

This past week, our community said farewell to a legend in David Sharif. However, with anyone’s death in life, there is a process that we all must go through to help us get through to the other side.

That process is called the grieving process. It’s something that we go through whenever we deal with a death in the family or in a death in the community/business field, etc. Grieving is a natural part of life and little do we know that it can take a long time or a short time, depending on how well you know the deceased.

Old Grist Mill Tavern in Seekonk, MA

In my life, I had to deal with the grieving process several times ranging from my three grandparents to various friends that I know closely. But the grieving process didn’t just resort to human deaths. There was also a grieving process for when there was a massive life changing event. One example was in 2012, when the most popular restaurant in my hometown was destroyed in a fire caused by a banana truck hitting a gas line.

I couldn’t believe it when it happened. I thought I was living in an episode of “The Twilight Zone” when I heard about the fire. In a way, I thought that many of us would be feeling the same way about the Grist Mill catching fire.

The Grist Mill, even though it wasn’t human, still left an indelible impact on all of us. The restaurant did so much for a town like ours that when it died, we all felt for it.

Everybody grieved with the loss of the Grist Mill in their own way, some were in tears, others just stayed silent, others just did nothing all day. For me, I grieved in my own private way wondering to myself if the Grist Mill would come back from the dead.

Thats the other part of this story, some things can come back from the dead, but they have to be material and have no living soul.

Now, I am saying all of this from an autistic/neurodiverse perspective. Like all neurotypicals, we grieve when someone we love and care about dies. Sometimes we have the ability to be in greater denial about something life changing that happened.

We neurodiverse can have a hard time separating the fact that we live in the real world as opposed to a fantasy world that we either see on television or read in a book. The sad truth is that we neurodiverse folk cannot go into our fantasy world and use whatever is in that fantasy world to rectify what we lost in our lives, simply because it doesn’t exist.

Facing reality can be a very difficult fact of life, but it must be faced. The grieving process is certainly no different. Eventually, we must come to terms with a death, and we can either run from the situation or face it head on.

Catch you all later!!

Blog #233: Being Angry with a Higher Power

I think that the picture says it all: it is very common to be angry with a higher power asking them why they would do such a thing such as taking away someone while they are young and in their prime.

As a neurodiverse Catholic, I know for a fact that I have been angry with the higher power many times. But none more so than the events of recent with the passing of David Sharif. It’s been a week since he was silently taken away and while I have started to slowly recover from his death, part of me still has that anger towards the higher power, asking myself why he would do such a thing?

Sometimes, we may never get the answers we so desperately want and that is a sign that perhaps we can’t just dwell on the higher power’s actions forever.

Case in point?

When my maternal step-grandfather died in 1987 of cancer (two years before I was born), my maternal grandmother was angry at the higher power for taking him away from her. To this end, she went to the priest and declared that she would never go to church again. It was her call and her decision, but my maternal grandmother is unfortunately one of the many who probably never will be pleased with the higher power again.

….

But being angry with the higher power is something that is often a choice we all have to make. As a neurodiverse individual, I can often get emotional with events and situations that are beyond my control. I often look for a scapegoat or someone to blame and sometimes, I direct my anger to the higher power asking them why they would put me in such a situation?

Maybe I deserved it, maybe I didn’t deserve being treated in such a manner.

The fact is that there is nothing that will bring David or anyone else taken away from this earth back. The important thing is to move on with our lives and carry on with our lives too by honoring someone’s legacy. I got to tell you that I’ve already had to carry on several legacies and while it may seem like a burden, it has helped me move on with my life.

Now I need to carry on my younger brother figure’s legacy in the autism/neurodiversity community and while it may take time, the higher power and I will hopefully be on better terms again. But for now, it will take small steps to reach that common ground.

Catch you all later!!

Blog #232: Autism and Epilepsy

When Autism Self-Advocate and Public Speaker David Sharif died this weekend of a seizure, it brought attention to something that is a silent killer within the community: epileptic seizures.

Seizures, as it turns out, is one of the major killers of neurodiverse individuals. As the picture above says: 30 to 50 percent of the neurodiverse population are on the autism spectrum. That gives 30 to 50 percent of families more fear and worry than what they already have because having epilepsy can be extremely unpredictable.

As I have said before, I like predictability. But I get the fact that unpredictability comes in a variety of ways. Some of it can be good, some of it can be bad and death certainly doesn’t like predictability.

I think the important issue that many autism and neurodiversity organizations need to take into account is the fact that epilepsy is a silent killer and that there needs to be more awareness.

30% of patients with Autism have epilepsy. 30% of patients with epilepsy have Autism. Highest risk for Autism is seen in those whose seizures that start in the 1st year of life. Risk for epilepsy in children with Autism is higher in those with greater intellectual disability, symptomatic vs. unknown cause, and history of regression % of patients with Autism have EEG abnormalities. Epilepsy in autism confers increased mortality.

Some of the most well-known autism/neurodiversity community leaders just happen to have epilepsy and are prone to seizures. They can explain to you that seizures do not stop because they have enough on their plates of life. Seizures don’t care how well known you are, whether you are known or unknown in life, they can strike and when they do, they strike hard.

I can only hope that David’s death can make people more aware of this silent killer and that more precautions are taken to reduce the risk of dying young. We all want to live full and healthy lives and I’ll be damned if you think otherwise.

Catch you all later!!