I did it… I presented at the Tennessee Disability Mega Conference (May 24, 2019)!
It was hard work preparing for this event… A lot of thought was put into organizing my presentation. I am not an entrepreneur yet, neither is Rainbow Mosho… but I am helping her now at almost 11 years old so she can understand how important it is for her to become one…
Why? Because there are no guarantees in life. We the parents and close family members, we are here now… we don’t know until when.
Government help and support… we don’t know what that is for the last two years. Current news do not provide any kind of relief or guarantee these supports will be around for much longer. I am not being pessimistic. I am being realistic.
Compounded to the fact that 500,000 + individuals with autism will join the work force in the next 10 years… and not everyone will get a job — there are many reasons why this may occur. (I have links to material and research confirming this)
Every person in the room – thank you for nodding your head and confirming what I’ve learned — we must create a plan, we must do it together and share what we learn. There are countless ways to guarantee stability and independence for our loved ones with a disability. Life can’t only be about the disability, the limitations. We create quality of life. We practice inclusion. We build on the opportunities.
I have compiled a detailed list of sources – all confirming there are ways to self-educate and create a plan and make it happen. Send an e-mail should you wish to receive this material (see email in one of the pictures).
I insist… mentors are needed to better guide and receive feedback during this process. I’ve written to various organizations/businesses – NO response yet! I look forward to that moment and another door, opportunity becoming a reality.
Read this article – written after participating in Beale Street Art Crawl in Memphis (October 2018) – In this piece, read the research from the OECD about Inclusion and Entrepreneurshipo.
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.