How? At this point of time, there is no limit to the various sources of support many families, educators and therapists can find – particularly if your kid/teen/adult has a diagnosis.
Yes, many of our children require various supports. Many of those supports are affordable while others are not. But also, many of them do not even exist… In my thought process, if it does not exist then it must be created. And money should not stop this from happening.
This is a global movement of communities connecting makers, designers, developers and engineers with people with disabilities (aka – ‘Need-Knowers’) to develop technological solutions for everyday challenges. Designs are free and available for any user to adapt for their needs!
It is all about Human Behavior!
To meet professionals in various fields and young college students from Vanderbilt who were willing and ready to follow their peers upon the request to volunteer their time and knowledge is beyond inspiring.
The curiosity to seek solutions to challenges most of them have never faced is beyond commendable.
BTW, the request was made to give up a long weekend!!! And many of them did!!! That’s huge.
This gives me hope for the future of my daughter – there will be individuals who care about her and many like them. Realizing this as a parent eases the process and the normal thought many of us have — what will happen to my child when I’m no longer by their side.
Sounds too good to be true?
It is true… It is real… It just happened to us and 14 other families/educators/therapists with particular needs.
What we all have in common — We are seeking quality of life.
Why is this important?
Because it is a confirmation the sky is the limit. It reaffirms my believe there will always be a solution to what may appear to be a limitation to the day to day.
What is needed? The desire and curiosity to reach out and not be afraid to seek help.
What was our final product?
We are better people.
We came out of this event empowered, marveled, thankful, excited about the future.
Now on to the practical final product:
Steppy – an App created by Team Thomais
So proud of everyone who contributed…
This is a Content Organizer, to support low executive function skills.
Allowing the end user to include data in smaller steps so learning is not overwhelming.
*With challenging topics like math — When you have dyscalculia… A paragraph with text and some numbers does not promote learning…
Imp: The app can be used for any area of learning that requires using/learning/applying several or many steps
Most importantly, it can be personalized.
It builds independence.
It creates a sense of ownership.
Photos and links to videos can be added.
An alternative to classroom education has been made available and I will keep surrounding myself with the adequate supports to make it happen.
Around the world TOM events are taking place.
Can you contribute? Do it!
Can you lead an event? Do it?
Can your skills or finances help support families with disabilities without charging them? Do it!
* The other projects will be made available online soon in the TOM page!
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?
Doors of opportunity and growth remain open for a young girl who learns differently… She deals with autism, with ADD, with some dyslexia and dyscalculia. That’s too much to handle for an adult, imagine for a child.
But I, the parent, refuse to have her carry that weight all by herself. I lighten the load. I prioritize her needs as a child first, then we take care of the realities of the diagnoses that at times make some of her days very difficult.
Wondrous #Nashville… continues to create opportunity for wonder girl…
This time Tikkun Olam Makers:Vanderbilt has put together an empowering event to guide college students while learning about human centered design, empathy and creating to support an individual with a disability…
We met the Knowers… we laughed, shared, pondered, thought, analyzed, realized, found common ground…
Soon we’ll meet again and see them in action, creating, breaking barriers!
Thankful, blessed, appreciative…
Autism, dyslexia, dyscalculia, and ADHD can be difficult to overcome in the classroom, especially when learning abstract concepts such as multiplication, division, and word problems.
Working with students with learning disabilities varies on a case by case basis, so we will work specifically with Thomais to find learning strategies that work best to help her learn these mathematical concepts.
Our next steps in this process are to:
1. Contact the Frist Center for Autism and Innovation, explain Thomais’s situation, and get advice from experts there about teaching strategies.
2. Look into existing workbooks, lesson plans, and strategies geared toward people with dyscalculia.
3. Think about ways to incorporate art, detective work, and/or strategies gathered from steps 1 and 2 into an engaging game focused on practicing Thomais’s math skills. (Programming)
Why is Human Centered Design so important?
Because every interaction you have with those who charge you for a service or product, must provide such product or service based on human centered design, based on your child’s needs, based on fully servicing or facilitating life.
It is not difficult at all to inquire about specific needs, to adapt the service or product when possible, if at the end, the money you are investing will show the desired result — that is that your child/adult will benefit, enjoy, value what is being used/practiced.
Let’s discuss this matter in depth. Let’s empower each other by discussing services and products and how they can be adapted/tweaked to fulfill your needs! Human Centered Design must rule every interaction…
Read more about Human Centered Design:
Human-centered design is a creative approach to problem solving and the backbone of our work at IDEO.org. It’s a process that starts with the people you’re designing for and ends with new solutions that are tailor made to suit their needs.
My daughter has a diagnosis… My daughter’s skills are considered to be limited… My daughter cannot interact with others… My daughter cannot do this or that…
That’s what many consider will happen to an individual with a diagnosis or diverse abilities.
I say… crapola to all of them…
I choose to interact and respect those who support individuals with a diagnosis, who do not see limits, who welcome interaction and who realize everyone can do something.
These are key elements to expose your child, teen and adult to entrepeneurship. Yes, that powerful word that builds skills that will last a lifetime. Above all, developing responsibility and independence.
This is no easy feat. This takes years to practice. It takes tons of patience. It takes the willingness and desire to accept your child will do things differently and achieve success.
Just remember they cannot do it alone. They need support and guidance. They need help. Repetition is key.
What can you do?
Do you as a parent have what it takes to make it happen? To achieve success? Of course you do! We all do have the capacity to work out the kinks of entrepeneurship. And as long as you are ready to seek support form your network and put aside preconceived notions… You will guide your child/teen/adult with diverse abilities to success.
I’ve begun the process. A recent, beyond magnificent, experience as a vendor at Beale Street Art Crawl in Memphis TN confirms this is the road to travel with my daughter and her abilities.
She has an incredible story.
She has talent.
She has charm.
She is curious.
She has family and friends that support her.
She still has a lot to learn.
The challenges she faces at this early stage of her life cannot be prioritized. Yes, they must be handled, managed, survived… but they cannot rule the dynamics of her existence. And the various mainstream organizations we approach cannot only see or emphasize the challenges.
This is why the media, businesses, organizations and downtown commissions need to fully support individuals with diverse abilities — in whichever field they excel at —
Bring on the Big Guns!
For example… the big organizers of well known art shows in big cities must include artists with diverse abilities. They must consider their lack of funds and open the door to include them in their well attended gatherings. The presence of an artist with diverse abilities does not represent an extra expense. On the contrary, it can mean greater media exposure. It can mean compliance with ADA. It can mean the realization that exclusivity does not represent quality.
Myself and countless families welcome the opportunity to discuss in detail the steps to take to make this a reality.
There are many steps we still need to take. But the ones taken so far are beyond meaningful.
Now,it is up to others to openly support and accept the value many individuals like my daughter bring to their organizations. And I will continue to remind them!
Thomais had a maginificent experience on October 20, 2018. She had her first discovery day as a vendor in a mainstream art show. She received her first lesson in entrepeneurship – creating, being her and receiving payment for her creativity.
This is huge. The repercussions are many for all involved.
I had prepared the road by sending a submission – late (lesson #1) – and being extremely persuasive. I had organized pictures of her paintings, present and past experiences and shared the fact Thomais is on the autism spectrum and wants exposure.
I did some research about the location, schedule. Hundreds of scenarios ran thru my mind — what could be fun and what could be too stressful. The fun aspects outweighed the stress and/or challenges.
Lo and behold… a YES was received and Thomais was to have her first experience, as a vendor, in a mainstream art show.
I thought: “Holy cow! I hope this organization understands how meaningful this is. They have chosen to practice inclusion – knowingly or unknowingly.”
There were many details to consider — material, tools, art, money, payment forms, drive, food, set up time, etc. —
I contacted various organizations seeking funds to purchase art material. There was no positive response — but I found out there is an arts reuse organization in Nashville that sells (low, low prices) recycled material! Details here!
Very little would have happened if her uncle Charlie would not have been involved. He’s a beacon in this huge step. He’s an artist. He’s a creator. He’s passionate. He’s a hard worker. And everything he does is full of emotion.
What did we learn?
Keeping it fun is key.
Planning is helpful but must remain flexible. You know when it’s time to go!
Sharing your story, your highs and lows is always welcomed by many. Watch/Read her Retrospective!
Keep smiling even when time passes and no one stops by your table.
Art is subjective… What someone likes, the other person does not…
Social Media rules (Facebook and Twitter) – sharing every step of our trek and discoveries is vital.
The reason to buy a piece of art is different for every buyer… There is a story behind every purchase!!
Thomais was so bold and wonderful… She gave away her biz cards. She asked people if they wanted to buy her art!!
The first buyers — got Meowlloween for their daughter!
The second buyer – a young artist who felt moved by Finally Free Niall Horan
The third buyer – an ex-Marine who had lived in Puerto Rico
The fourth buyer – a friend of the family that purchased Meowlloween – he got the We (heart) UFO’s
The fifth buyer – GUMVANA was purchased by a beautiful couple who just reunited after 35yrs!!!
Their initials and another heart was added to the painting!! They willingly paid twice the price!! #CamilaCabello your song inspired Thomais…
She created a new version of Havana!!! Beale Street Art Crawl
Victoria Franklin check this!! Your art show creating magic
The sixth buyer – a mighty supportive young man whose face said it all when he found out Thomais is on the autism spectrum. He asked her to please keep painting…