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I say YES to 12 new chapters and 365 new episodes

Right before 2018 ended, I read something that brightened my day and forced me to remain in gratitude… Regardless of the challenges and uncertainty we face.

A new year means… 12 new chapters with 365 new episodes…

May every new episode in your life be filled with discoveries and strength to handle the challenges.

For us, the year just started and a very exciting episode is enjoyed… My kid has lost the fear to go underwater in a pool… It is huge. A limitation is lifted. She made the choice. She was capable of making this choice.

The degree of assertiveness, independence and self-worth this new step brings is limitless. Her eyes shine brighter. My heart pounds faster!

 

Moving on with various episodes that have caught my attention…

 

  • PanAfrican Autism Congress in Kenya (April 2019)

I’ve received the most  marvelous news. My abstract –

PARENTAL EMPOWERMENT: KEY TO SURVIVE AUTISM

has been accepted and I have the opportunity to speak at this empowering event.

As the episodes transpire… this one is full of challenges.

Yes, I should be there! Yes, I must share our lessons learned.

But, reality at this moment does not allow me to make this decision and be present. It is not the time. My priorities make me realize this.

That time will come…

 

  • Diverse Abilities, Good Business = Opportunity

Congrats to Mr. Kennedy for writing about a topic we the parents have been talking about for years… Yes, the business world must hear from those in power to validate a fact… Individuals with diverse needs must be a part of the work force – verbal, non-verbal, with physical limitations… If they can do the job, they should apply, they should be interviewed and if it is the right match, they should be hired.

I agree, not everyone with a diagnosis can have a job or start their own business. But those who have the capability or adequate supports must seek the opportunity to open every single door that exists to make it happen.

I have written to business owners and business schools inquiring on the need to create mentorship programs supporting those with disabilities interested in learning more and building a network. So far… NO ANSWER!

My two blogs from October 2018 (before Mr. Kennedy’s piece!!) emphasize this idea that entrepeneurship and inclusion is indeed good business!

 

  • Sad news from Peru 

A young boy with autism drowned — Yes, it happens. But in this case the events that led to the fateful ending are the responsibility of the adults. Why?

The boy eloped – sad and true it happens. Parents can’t be blamed. Talk to our families to understand these dynamics. The family approached the press – NO RESPONSE. The family went to the police – NO RESPONSE.

The boy got on a bus. The bus driver asked for fare money. The boy is non-verbal. A fellow passenger was asked to cover for his fare – she claimed she did not know him and did not pay. Bus driver drops off the boy at the last stop — by the SEA!

3 days later – the boy was found dead.

Peru has a law similar to the Amber Alert we are so familiar with. That bus driver, that lady in the bus had the responsibility to deliver this boy to the closest precinct. They all had the responsibility to give him a chance to continue living.

This was not the case… Another loss to autism, to indifference, to lack of training.

*Training of law enforcement, government employees, the media on Autism and the myriad of diverse abilities, is needed all over the world… Not only in Peru!

 

That I know… this never happened to my daughter. Other barbarities took place, she has PTSD from it (being screamed at, taken out of the classroom, being told to shut up in the midst of a behavior crisis, etc.), and we deal with it the best way we can.

In this case, there is proof. There is a video. This boy got hurt by the adults who are supposed to keep him safe and learning while in school. The boy now has PTSD. A boy who could be taught how to learn will face additional challenges as time passes.

I insist — school districts that refuse to implement ABA based behavior plans and proceed to not train all personnel interacting with students that have an IEP or 504 must be held accountable for their actions.

If there was no footage – nothing would have happened to those employees. I know that. It’s happened before.

UPDATE:  The teacher in question was fired almost immediately after the event, but she later appealed to a tribunal, and they overturned the school’s decision. The teacher has since been re-hired, although she’s been reassigned as a floating teacher in various classrooms throughout the district.

The above update stirs a variety of emotions in me.

  • I first say: Oh, again. No one is being held accountable.
  • Then I think: Wait, this woman abuses a student with an IEP and she gets her job back?
  • And I also realize: She’s lucky this boy was not my child.

These are the abuses that are driving countless parents to home school their children. I will say it everywhere I go – I wish I could home school. My daughter deserves to be in an environment that accepts and respects what she can and can’t do… and help her overcome what limits her now.

 

There are many moments in each episode that make me think, make me react. What is most important, I make the choice to be present, take the good, learn from it and avoid repeating the not so good.

This is it for now…

Tell me about your episodes. What makes your heart skip with joy? What keeps you awake at night?

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When I was 15! – LinkedIN

LinkedIn celebrated its 15th anniversary… Congrats…

They requested people write what they dreamed, thought about when they were 15.

I shared these thoughts!

 

#LinkedIn

#WhenIWas15

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The Ambassador of Autism Tourism!

My daughter wants to travel. She wishes to discover the world. She says all the time, you went to China and you did not take me… not fair!!

We have read posts about families raising children, teens and adults on the autism spectrum who have succeeded planning trips. Yes, even with autism on board they were capable of enjoying a vacation. Above all, not allowing the diagnosis control the dynamics.

Here is our effort. We must share what we are learning and enjoying.

I am aware not everyone can do what we do, how we do it. The purpose here is not to compare since we have something to learn from all of you, I firmly believe that. The purpose is to share how we accept the awesome and the challenges of our day to day. Above all, how we seek quality of life.

Enjoy the latest posts…

Ambassador of Autism Tourism

Real Practices, Solutions

Practical Advice – What works for us

NYC Here we come!

Conquering NYC and Autism

Visiting the American Museum of Natural History

How Autism Friendly can NYC be?

Emily = Dakota = NYC = UN

Is Tampa an autism friendly city?

 

What are the future. dream locations she wishes to visit? Read this:  Art Inspires the Ambassador

She loves to draw. She is very original. She has not been to these places. She may have seen pictures of these places. It is her interpretation.

Questions, suggestions? Email:  autismhappykingdom@gmail.com

 

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I HAVE AUTISM! ACCEPT ME…

Thomais has autism. She can now speak – after a massive regression in Dec. 2010.

As time passes, her prowess with language and body expressions is obvious and beyond enjoyable. At the same time, her message is clear, concise and beyond real.

I HAVE AUTISM… ACCEPT ME!

Thomais wants to be acknowledged, accepted, understood, respected – she wants to belong.#Autism can present challenges. The rest of the world needs to hear from those living it, to better understand what it can be about.Find out more about Thomais here: www.autismhappykingdom.com#twominutewonderclip

Posted by Autism: The Happy Kingdom on Thursday, April 12, 2018

 

She wants to be acknowledged, accepted, understood, respected – she wants to belong. #Autism can present challenges. The rest of the world needs to hear from those living it, to better understand what it can be about.

This was Thomais’ reality in 2012… behavior crisis that could last 2 hours… https://www.youtube.com/watch?v=vfcRx… It is no longer the case… Now we celebrate her!

Find out more about Thomais here: www.autismhappykingdom.com

#twominutewonderclip

NOTE: I am aware not every family can have their child communicate the way Thomais does. We have been there. We survived the not knowing or understanding. May Thomais’s words help those around you understand what your child/teen/adult could be experiencing.

 

 

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SAY IT WITH ME – WE WANT ACTION NOT #AWARENESS

Last April I wrote this… AUTISM REALITIES

It saddens me to confirm, progress is not always a reality in many households.

Parents are being told to light it up blue, to pay for walks or to use a puzzle piece to show awareness towards autism.

These meaningless symbols do not represent actual needs. These meaningless symbols do not create opportunity to enjoy quality of life. These meaningless symbols keep parents in a circle of false hope as autism continues to challenge everyone’s existence.

Autism is not easy. Autism is complicated. Not everyone understands autism.

Economics, politics, science, philosophy and all the forces of the universe have us in this conundrum and we the parents do what we can to the best of our abilities.

My thoughts this year:

We want action NOT #awareness
We need #mediainclusion
We need real options, steps to follow to seek quality of life…

Don’t dare highlight blue lights in April when…

A parent tried to kill her child with #autism
A teacher verbally abuses a student
School districts violate federal law
Law enforcement is not 100% trained
Bus drivers and teacher assistants rape girls
30% of marriages end separated or divorced
Moms have #PTSD and #Depression due to lack of support from doctors/therapists/academia
Academia is behind in thought process and suggestions how to live/handle/manage the diagnosis

Doctors diagnosing still tell parents there is no hope, this is how your child is going to be and will end up in an institution
Ignorance and fear reign rampant

Insurance companies limit or do not cover the wide array of therapies that can help achieve quality of life

Teachers to be do not receive appropriate training prior to working with our kids!

Individuals with severe autism are poorly served by the organizations claiming to support their needs
Poverty reduces the possibility to seek quality of life – parents are not given the opportunity to learn about self-entrepeneurship or become acquainted with their rights
Per the CDC – now, 1 in 36 kids have developmental disabilities
and tons more…

Talk to my daughter and I, we have tons more to share… We do not demand a perfect world. We simply want things to improve and we are ready and willing to be a part of the process.

 

THE EYE (12/2017) by Thomais V. Moshopoulos

This creation is the result of a question asked to my daughter – now that she can talk —

I asked: “What do you see?”

She answered: “I used to see rainbows”

I asked: “Do you still see rainbows?”

She answered: “Not anymore”

I asked her to draw what she saw and this is the result.

 

Read:  THOMAIS MEDIA CHALLENGE