Autism Call to Action! MASKS OFF!!
Life is short and its Time to take the MASKS OFF & MOVE INTO ACTION
Autism Educator: We educate to change your mind about Autism, so
YOU can change your actions towards the Autism Community.
I’m devastated and inspired by the loss of Kobe Bryant over the
weekend. Kobe Bryant was the change he wanted to see in the NBA and in the world!
He was not only the best at his craft, but pursued his passions apologetically.
He identified & serve his purpose while his work ethic allowed him to be there
greatest at everything he touched. He could have sat home after retirement but continued
to share his gifts with his family and with the world. He made a difference.
You are what you say you are, and Autism parents & caregivers
are not alone. I’m not satisfied with a lot of things I see in the community/world
related to our Special Needs Community – specifically Autism. I have worked diligently
to be a change agent for my autistic daughter.
I’m now compelled to MOVE (Mindset Overcomes Virtually Everything)
& be the change I want to see in the Autism & special needs community. With
my ability to Empower Transformation, In Spite of.., skills teaching, developing/delivering
training, knowledge of the education system, experience as an Preemie/Autism/Single/Working
Mom, involvement in civic organizations & knowing the feelings of isolation,
excitement and fear: I can be the change aimed at Autism Advocacy, Awareness,
Education, Inclusion and Community – one family, event, organization and school
system at a time.
Support the change so that we can Empower & Transform you to be
the change, in spite of obstacles!
Let’s MOVE! MOVE – Mindset Overcomes Virtually Everything!
The headlines make you cringe, but the reality makes you SICK!
As this story broke over the weekend, it took me back to an earlier
story of a grandmother/caregiver whom shot her two autistic grandsons then attempted
suicide. **
1/25/20 - NYPD Cop and
Fiancee Let Autistic Boy Freeze to Death, Police Say: Long Island prosecutors:
Killer dad and fiancee coldly discussed his dying autistic son’s condition,
never called for help after boy fell on frigid garage floor
A camera
positioned to show the garage floor was labeled “kids room," leading
investigators to believe the frigid room served as the boys’ sleeping quarters,
prosecutors said. “The depravity of these defendants is shocking," said a
shaken Sini after hearing the recorded conversation. “They caused the death of
this little boy, then watched him die. "The tiny victim’s body temperature
plunged to 76 degrees before his Jan. 17 death in the home on Bittersweet Lane,
where Thomas and his 10-year-old
autistic brother Anthony were forced to use the sub-freezing garage as their
bedroom, officials said.
The above story took me to here mentally. This story is the
significant reason I want to ensure that caregivers are acknowledge as we advocate
for Autism support!
4/17/19 - Dorothy Flood
indicted for murder of twin grandchildren. Woman accused of killing twin
grandsons felt overwhelmed with their care, court docs say
Summary of Story
TUCSON, Ariz. Dorothy
Lee Flood -- the 55-year-old grandmother and legal guardian of the two victims
--was indicted this week on pre-meditated
first-degree murder charges, for the murders of her twin grandsons…… both twins are diagnosed as severely autistic and
non-verbal. The boys great-grandmother is
the person who found them.
The PCSD said the victims, 8-year-old twins Jorden
and Jaden Webb were found shot to death in a home in the 2400 block of West
Kessler Place on Thursday, April 4. Deputies say
Interviewed while in Northwest Hospital, Dorothy Flood admitted she shot both
boys, and used prescription drugs to try to kill herself.
“Somewhere, something snapped.”
**Hmm, ya think? 2014 her husband died, 2017 daughter died of what
was initially thought of as suicide but later ruled an accidental overdose of
medication (which meant the daughter was dealing with her own medical issues
while raising the twins). Dorothy has a medical condition and has now quit her
job to care for her grandsons that she may not be trained to care for. Violence
is not OK and NEVER the answer. The grandmother may perhaps believed she was raising
the twins without HELP and without HOPE! Sounds like she was asking for help,
but potentially from those that didn’t understand the magnitude of her cry for
help.
*** How many of you feel that you are raising your HIP (Highly Intelligent
Person with Diagnosis) with NO HELP or HOPE? How do you overcome those moments,
in spite of your obstacles?
News Feedback
from community of Dorothy Flood
A family member told investigators
that Flood had told her the boys "had become too much for her, especially
in the last six weeks," as the boys had been having trouble sleeping.
***What happened after that? What did they do with the information?
As a mom that sees a pediatric neurologist and pediatric sleep specialist, sleep
matters. Did anyone offer her a nap?
Dorothy Flood's mother Virginia Webb
lived next door and usually came over in the morning to help get the children
ready for school.
***How many of you get that early morning help?
Virginia Webb reported her daughter
had a good relationship with the boys but had been feeling overwhelmed by their
care. He said, "Dorothy has confided with Miss Webb about the boys
becoming too much for her, especially in the last six weeks." But she went
on to say she did not believe her daughter would hurt the boys.
***What did she DO once Dorothy said that she was overwhelmed. If
she didn’t think she would hurt the boys, what did she think would happen? Does
anyone think past their empathy to action of solutions?
- ‘Maybe she came to the end of her rope.’ Friends of woman accused of killing grandsons speaks
- “You could see the fear that she had of the future.” said McCord. “She was afraid she wasn’t going to be able to handle it.”
- But despite that fear, McCord said Dorothy gave her whole heart to those children. Even quitting her job to take care of them.
- McCord told KOLD News 13 that Flood did have a medical condition that may have affected her brain
- “Now all anyone can wonder is what they could have done to prevent this.”
***ANYTHING – maybe one thing would have made a difference that day and the days to come.
***
“We just wish she would have reached out. To any one of us at any time.”
*** She DID reach out. Did NONE of what she said translate as "reaching out"? How many people reached out to her, families, church, organizations, etc.? Reached out and said what? Asked for what? Was she even sure what to ask for, where to ask for it?
***MASKS OFF Defined
Masks off defined by urban dictionary states: When
you just don't care anymore.
People
may also use mask
off in casual speech and writing to refer to being their true
selves. The expression of taking one’s mask off, a common metaphor for being
authentic. These uses may intentionally allude to the Future song, in his
lyrics (e.g., Quit being fake, people. Mask off.). https://www.dictionary.com/e/pop-culture/mask-off/
***I have always had my mask off until I had Sydney, but protecting
her has cause me to put my armor up. I am now realizing that I can still wear
the armor and not the masks. The armor will protect my heart but the putting away
the mask of challenging Autism behaviors will allow me to BREATHE without fear
and anxiety!
Autism Educator shares A.M.M.O.
AMMO = Autism Mom Mask off
Ammo is an abbreviation for ammunition, so to avoid any mistaken
interpretations, Autism Educator looks at the term from a specific definitive
perspective. https://www.dictionary.com/browse/ammunition
noun
information, advice, or supplies to help defend or attack a viewpoint,
argument, or claim: Give me some ammunition for the debate.
Autism Parents and Caregivers
Revisit the statement from the loss of Jaden & Jordan:
“They
kept more to themselves. They would wave ‘hi’ or ‘bye,’ but they kept to
themselves. See them every day, they were good kids. They didn’t talk, but they
were good kids. She took care of them real good.”
How many people would say the same thing about you? How many
people NEVER know your pride, exhaustion, confusion, hurt, numbness,
disappointment? Many won’t ever know, because we don’t share.
I often say that social media has distorted our real lives. I
listen to motivational speeches all the time and Les Mills says that the people
praise in public the work and sacrifice that is done in private. Any person
responsible for an autistic or any other special needs person, adult or child,
KNOWS the work that it takes to even go out in public.
Fear
But often we don’t share. Why? Fear. Fear of being viewed as a
ungrateful for the blessing of your child. Fear of being viewed as a bad parent
because of your child’s behavior. But fear of who? Who matters more than your
HIP loved one? Has your fear of sharing stopped any of those things from
happening? Probably not. Have they
gotten you closer to any solutions from other parents going through the same
thing? I’d say a resounding NO. When we don’t talk about anything to anyone, we
learn nothing from anyone. Your child’s autism behavior is not exclusive &
I’ve found out if you share a little, you learn a lot!
Call to action for MO - Masks OFF
..an urging to do something in order to achieve an aim or deal
with a problem. a piece of content intended to encourage a viewer, reader, or listener to perform a specific act, typically taking the form of an instruction or directive.
o
Problem: Lack of KNOWN support and resources to families with
autism
·
Who: Autism Parents
& Caregivers. This is a call to action for Masks OFF
Its time for to release the AMMO: information, advice, or supplies to help defend or attack a viewpoint,
argument, or claim: Give me some ammunition for Autism
Acceptance and Inclusion.
Why: So we
don’t feel like we are alone, isolated & ashamed in Autism community. So people will understand that our kids can
perform the same tasks as neurotypical children, just in a different way. So
that people understand our kids have an neurological disease. So that people
can understand just because our kids may exhibit bad behaviors, it doesn’t make
them bad kids. Kinda like eating a salad doesn’t make you a vegetarian.
Action: Parents
and Caregivers Take Masks OFF! Its OK to say we are proud of progress
and terrified of setbacks! Smile, laugh, talk, share, join groups, take
classes, be honest, cry, scream, yell, talk about our kids good and bad days. So
that people understand why we are so PROUD of the good, because we have
overcome the not so with guidance and help.
Who: Facilities,
Schools, Airports & City Leaders like @CLTAirport that have
highly sensory environments but provide NO accommodations for sensory needs.
Background: We travel
often. I live in Charlotte. Imagine my surprise when I came in the new terminal
and saw a nursing room and Animal room, but no Sensory room. Their
accessibility does cover service animals. But since I am not nursing and don’t
have a service animal, my child with a disability is less deserving of a
“Space” in @CLTAirport? https://www.cltairport.com/airport-info/accessibility/ “Service Animal/Pet Relief Areas are located inside
the terminal (post-security) on the A/B Connector”….
On December 10, 2019 @CLTAirport broke ground on 366,000 square feet. “The $600
million project will add 175,000 square feet and renovate another 191,000
square feet of the current terminal lobby. Officials say it is the largest
construction project in the airport's history.” https://spectrumlocalnews.com/nc/charlotte/news/2019/12/10/clt-airport-breaks-ground-on-new-terminal-expansion-project
Action:
Advocate for sensory rooms in Airports, schools, facilities, etc. Local organizations that support Autism
community can be starting the conversation.
Determine the HOW and why other airports made this investment in their
passengers and advocate for @CLTairport to do the same! @CLTAirport can address
this NOW while they are making other changes.
Why: Sensory Rooms in Airports, other airports have seen the need & benefit. Why not @CLTAirport
Who:
Organizations that support autism families but don’t network to build a sense of community.
Why: After the
diagnosis, we are so overwhelmed, we don’t know where to start. We can’t reach
out if we don’t know you exists. Some organizations only serve on paper,
providing no significant services to families.
Action: Find
autism families that need you and build a community of support inside and
outside of meetings. SPARK found us. So can you!
Who: Swim facilities & instructors that provide no accommodations
for children with disabilities
Why: At the
same time when Maddox Ritch went missing and died from the accidental drowning
& was found .5 miles away from my job on 9/22/18, I was in “talks” with
Warlick YMCA in Gastonia @YMCAGaston practically begging for my daughter to
continue swimming lessons there. I lived in Gastonia and frequented Rankin Lake
often. Why? Someone had started a special needs swimming program and only included
their friends kids, although she was special needs and had been taking lessons
there since 2017. The staff was rude and the initial talks with the Directors
(Michelle Rock Bowers & Rachel Kafsky) seemed hopeful but ended up
alienating us, so much so that I could not let my daughter back in the pool
there.
I filed a formal complaint with the ada.gov – because had my child
NOT been autistic, she would have be
en able to walk up and take a group lesson,
we would have never been having this conversation. They said they found no wrong doing on the
part of the organization, yet I still do! I called the local paper and news
outlets but since she didn’t drown, their treatment of us was not newsworthy.
Since then we have moved to
the city of Charlotte (to have access to resources) but only started swimming
lessons in November of 2019 at the @CLTAquatics. Its taken me that long. Autism
behaviors include fleeing and sensory issues. In short, autistic kids LOVE
water. *I will post later with supporting documentation.*
Action: Build
swim programs that are inclusive of all needs, including autism.
Who:
Amusement parks like @Carowinds & @WaltDisneyWorld that have
a system in place to provide accommodation for sensory needs, but doesn’t
evaluate how the system works.
Why: We attend
both parks. @Carowinds Charlotte there are many times when the park workers are
not aware of the form at all. Conversations explaining this to the
“Supervisors” are fruitless because they insist that their staff are aware
& accommodating. We hold season passes, they are not. @Carowinds this
summer we had an incident with a lifeguard that was standing next to my
daughter and would not help her out the pool because she “Looked like she could
get out on her own! I find it hard to believe that the park emphasizes
“invisible disabilities” that go along with their forms. I made it a teachable
moment for my daughter – for her to ASK for help when she needs it. She’s
verbal, but what about the non-verbal population?
@WaltDisneyWorld
the process is similar to the one in place at Carowinds. The issue
arises when you get a 90-minute (or longer, this is Disney) time for a ride.
Once you are assigned a time for a ride, you can’t go on ANY other ride until
you have completed that ride, at that time. So what do you do with a child that
has issues waiting? You attempt improvise, sometimes cry & eventually
leave.
@DisneyCruise I want to state the @DisneyCruise was a wonderful
experience for us. They state they don’t have special accommodations but they were
EXTREMELY accommodating to my daughters needs the entire time.
Action: Work your own current system. Re-evaluate your policy
quarterly. Send a secret parent, even an employee with a special needs child,
to walk through your policy WITH the child. Then they can provide feedback on
the process. IF you have a policy that provides accommodations for the autism
and special needs community, physically continue to walk through that policy.
We applaud the starting point, but don’t want the current policies to be the
finish line.
Who: Program
Directors, Coordinators, Organizers of events who develop programs &
curriculum without the special needs community in mind.
Why: By
definition its discrimination. If you haven’t Included everyone, you have
excluded someone. If you put anything together and don’t think about EVERYONE
when you do, you have discriminated against the people you have not thought
about. Period
Discrimination is when someone is treated unfairly or
differently. Discrimination is when a person is treated
unfairly or badly because the person is one of a particular group. ... In some
countries, discrimination against somebody on the basis of
race, sex, religion, sexual orientation, age, or disability is illegal.
Action: Develop programs that are inclusive of all individuals
regardless of need or disability.
If
you are not trained to do so, reach out to an organization that can help.
Who: Any teacher, educator, counselor, Boys & Girls Club, YMCA whom has
used the words: Your child has more needs that we can provide.
Why: What have you done to determine their needs?
Have you taken the time to understand what is needed from you for the child to
be successful? Or is that too much to ask?
Action: Take the time to understand the needs of the autism
community. If you can’t provide the support now, do the work to determine
how you can provide it later.
Who: Sororities, fraternities, church goers, family members,
friends, co-workers, associates, neighbors that know someone that is caring for
an autistic child & do NOTHING! You are on social media as much as you
breathe, but haven’t done one google search about autism, EVER!
Why: To know someone is taking care of a medically
fragile child with autism, is similar to taking care of anyone medically
fragile. But since our kids disability is invisible and lots of time we keep
MASKS ON we never even experience encouraging words. (I’ll get to the words
next).You are supposed to be the support systems when there is no support in
other areas.
Action: Educate yourself & consistently provide support to the
autism parents, caregivers and organizations. So that
they feel they have support without judgement.
Who: Parents, non-Parents and parents of non-autistic kids who
pass judgement. When you see a child in “tantrum” mode &
judge the child or the parent. You judge by viewing a meltdown as lack of
discipline or bad parenting. Stop and consider it might be a meltdown.
Why: A meltdown is described as the response of an external stimulus
overload that leads to an emotional explosion (or implosion). So neither the
kids or the parents have control over this. Its painful to our kids and painful
to us to see our kids go through a meltdown. We do things within our power to prevent
this behavior, but by nature, as much as we wish we could, we can’t. https://autismawarenesscentre.com/what-is-the-difference-between-a-tantrum-and-an-autistic-meltdown/
A little Help goes a long way. Maybe hold the door for a parent
when they are taking the child out of a place.
Action: Stop the judgement and provide HELP when you see a parent
handling a child with challenging behaviors.
Who: Everyone who does NOT talk to the autistic child, but talks
to the adults around autistic kids. When I’m asked: Can she talk? When the
doctor walks in the room and never acknowledges my daughter. SHE is the
patient!
Why: Even if our kids are non-verbal, they still
have a voice.
Who: All those who hear a parent plea for help & do nothing to answer
that call – directly or indirectly
Why: When you get overwhelmed, it hard to know what to ask for.
And to from whom opens up a whole new view of who actually cares.
Action: Answer the call for help from the autism community anyway
you can. Look up a link, send an encouraging text. YOU start the
conversation about autism. It may be as small as knowing that you understand!
The calls to action for the Autism and Special Needs community are
infinite. Here is a list of some others that can benefit from changing their
minds, so their actions towards you and your family!
- ·
Those that are co-parenting and do NOT follow
the treatment plan when the child is with you. Are you OK with the imbalance
this does to your child?
- ·
To the parents that let the IEP Team drive the
goals of the IEP. Its YOUR child and they are only going to do what is required.
If you don’t require it, don’t get mad when the school doesn’t do it.
- ·
Parents that take everyday tasks for granted,
like preparing for school, enjoying field day, not caring if your child has a
substitute teacher, or if there will be a fire drill at school.
- ·
Those that see a child fleeing and pull out
your phone to record it, instead of helping to secure the child.
- ·
Those that work at governmental agencies or in
capacity where they know programs exists and don’t share.
- ·
Organizations that only provide support on
paper, but do no actual impact in the community.
- ·
Those that criticize the parenting of autistic
children, without understanding autism behaviors.
- ·
To those that never ask a child WHY?
- ·
To those that don’t hold our children
accountable because they think they are incapable of performing tasks.
- ·
To the Administrators, Supervisors and Program
Directors that don’t give our kids a chance.
- ·
To those that think our kids are ignoring you when
they don’t answer.
- ·
To anyone that says, they will eat it when
they get hungry enough
- ·
To anyone has laughed at a someone that won’t
keep shoes on in public places
- ·
The counselors that give the minimal services
when attending therapy appointments (You also have NO idea what it took to get
to these appointments, they MUST be meaningful)
- ·
To those that think “Field Day” is a Field Day
for Autistic Kids.
- ·
To those who say: “Just get a baby sitter” How
do you suggest I do that?
- o
Is there a special needs/therapeutic mobile
child care with medically trained staff… that I can afford?
- ·
This is also for the Autism Parents that have
yet to discover, they are autism parents.
Enough about me, what about YOU?
*comment below with your answers & SUBSCRIBE for more Autism Education
·
What is your Call to Action?
o WHO do you want to address?
o WHY are you addressing this specific group?
o What ACTION do you want to see them perform?
o What will YOU do differently?
o WHO do you want to address?
o WHY are you addressing this specific group?
o What ACTION do you want to see them perform?
o What will YOU do differently?
· What are your MASKS related to your Autism experiences?
· Are you ready to take your Masks OFF? Yes – Not at All – Not Yet
· Why?
· What will you need to take and/or keep your masks off?
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