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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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Volunteer work in the Happy Kingdom!

Yes, at 8/9 years old doing volunteer work is extremely important.

But wait, at this age kids should be in parks, riding bikes, some may say playing computer games is part of being a kid these days. But T. and her friend S. were taken to the Thrift Store, part of the Homeless Empowerment Program in Clearwater.

T. and S. know each other. They play great together. They leave each other alone. They drive each other crazy. They are kids learning about life. They are kids and in most instances, they’d be regarded as one of the bunch. It is wonderful and as parents, we are so proud.

The kids wondered why did we have to volunteer. We explained in simple terms – We want to give back and be thankful for everything that is good in our lives because others are not as fortunate. Explanation accepted.

While volunteering, reality is more than obvious and we moms start realizing that 10 years from now our kids would not survive 5-10 min in any job. We were not there to play and personal interests confirmed how much work was to be done (sorting clothes and placing them on hangers). Once the personal interests were no longer thrilling and the realization that actual work is expected, this is when our duty as parents became really fun. Looking for entertaining explanations to keep them focused was a live rendition of every reason we’ve heard moms say for hundreds of years. Let’s sort by color, by specific item, do this number of items and we’ll do this,  we have so many minutes left, that’s enough I need you here right now. And you can imagine the rest.

Continue reading Volunteer work in the Happy Kingdom!