April Never Ends
Johns Hopkins on Self-Spreading, Self-Propagating, Transmissible Vaccines

And Another Reason

Blue loveBy Cathy Jameson

As I turned the calendar page to May, I thought of this old post that I’d shared with family and friends a few years ago.  I wrote it in response to people wanting to celebrate autism during the month of April.  I was stunned.  Celebrate it?  Really? 

--

No lights. 
No blue. 
No celebrating. 
Why? 
Well, for a few reasons, including reason #3011.

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The other reasons?

The seizures. 

The behaviors.  

The wandering.  

The loss of speech.  

The loss of gained skills.  The cognitive challenges.  And, if I may be so bold, the loss of future potential.  Why would anyone ever ask us to celebrate any of that?  We can't.  And we won't.  We will, however, celebrate Ronan and the joy he brings to our lives.  And let me tell you, there is so much joy that that little guy brings to our family! 

We love to share the joy he brings and will continue to share it.

But the diagnosis itself?

It is not a gift.  It's a life-long, challenging disability that keeps a grip on Ronan and our family.  Do you celebrate cancer?  Diabetes?  Alzheimer's?  Probably not.  So, don't fall for the autism blue washing and autism celebrating that's going to flood the airwaves this month.  

What can you do instead?

Help a child. 

Help their family

Learn the signs and symptoms of autism.

Learn how to prevent autism, too.  That's possible.  We learned too late for our son, but young moms and dads can work to prevent autism better than we ever did.  As challenging as life is for us now, more than anything, the thought of others being preventing what we could not keeps me so very hopeful.

--

Since I wrote that short post, I’ve been focusing on autism action every April.  In my opinion, action is a whole lot better than a celebration.  It’s better than awareness and acceptance also.  It can take careful thought and planning, but I hope that you would consider adopted autism action in your own area.  You could even do something today.  Helping a family with a child or adult on the spectrum is a simple start.  Volunteering at a school or an autism therapy center might be a little challenging, but imagine the insight and experience you’ll gain! 

Helping is something that can be done year round, not just for the month of April.  So, when you get the chance to perform some sort of autism action, let us know.  We’d love to hear what you did and who benefited from your time in our community.

Cathy Jameson is a Contributing Editor for Age of Autism.

https://www.youtube.com/watch?v=R6rcHegBNvc

 

Comments

Jill in MI

Before my daughter graduated from high school (certificate), I could see down the road that she would lose a lot of social contact by no longer seeing her friends from school. Not hang out friends, not deep relationship friends, just friends she would see every day and say hello to. So, I e-mailed a few of the parents of her friends and asked if they would like to go to the movies. Word eventually spread. What started with a few e-mails has grown to about 92 (now paused because of you know what).
Every month we have gone to the movies and then traveled over to McDonald's where they order food and "hang out" for about an hour. Sometimes we have as many as 32 young adults and sometimes we have 10. The e-mail list is huge because it contains not only the young adult, but their parents, caregivers, neighbors and sometimes grandparents. All are invited to attend. If you are a first-timer and I do not know you, I ask that the parent stay for the movie. Quite a few parents stay for the movie, but do not sit anywhere near the "kids."
They love to sit in the back rows all together, but some do sit apart. They help each other. They help each other order food at McDonald's. They watch to see who goes in the bathroom when we come out of the movies and let me know who is missing. At the restaurant, I walk around and they vote on the next movie they want to see. They can tell me or they can point to the picture on my phone. They have definite opinions! They are loud and sometimes swagger around in the entry way of the theater - you know, being COOL. Some talk about a job they have, some do not talk, but sit in with the group - YAY! We have been very fortunate that we have had very little drama and we haven't lost anyone going from the movies over to Mickey D's. This would now be our 10th year of monthly movie Saturdays.
The parent support is awesome! Those that don't stay for the show come back to help get everyone over to McDonald's. (Thank you to McDonald's staff for their patience and support!) For those that do not have a job or are not in a day program, sometimes this was the only day they were out of the house with friends. This has grown in so many ways that I could not have foreseen. More young adults joined Special Olympics because that is what their friends were doing. Customers at McD's would ask about our group and most had a story to tell of their own disability struggles. Support from the group for hard times - funerals of parents and grandparents. More outings put together outside of the movies. Two of the moms put together a Park/Walking Group that met every Friday from May of last year until it snowed just to keep this group together. A beautiful ripple effect.
We are looking forward to starting back up again. Can't wait!

Emmaphiladelphia

I think an organized effort to repeal the 1986 National Vaccine Injury act is a good start. Once so-called vaccines revert back to normal medicinal classification and are vulnerable to lawsuits, we will see a drop in vaccines offered and a drop in injuries. The vaccine injured will have their day in court along with Discovery. Juries will determine the payout. Thanks to Covid vaccines, we have the largest awareness of vaccine injury and potential side effects we have ever had. We should capitalize on this momentum.

Targeting non-verbal autistics with Hadley's recommended reading program is a great place to put your volunteer efforts. Teaching them fine arts is another good outlet.

Bill

There is a NeuroFibromatosis awareness month in May which is the rare condition I have. I guess we with NF need to accept life threatening and disfiguring nerve tumors and rare cancers. To hell with the vaccine controversy it is about the absurd "acceptance" month and how the media wants people to accept Autism which is often a combination of a serious learning disability and a serious mental illness next will be dementia which has some similarities.

Beleaguered Autism Mom

When my sons were in elementary school I volunteered for the Everyone a Reader program - where a child is given 15 minutes of daily, one-on-one reading practice with a volunteer. When I said I wanted to support a Special Ed. class, they said they didn't do that because they "don't know those teachers" worst of all, some of the volunteers said "no way, I don't want any special ed kids assigned to me." I managed to get one other mom to join me in supporting one special education class. In high school I got a BCBA assigned to my son's class. It took 2 years of fighting the school. Most recently I bought several copies of J.B. Handlys book (Underestimated) to give to families with non-speakers. Why am I passing this information, instead of social workers? This is why I call myself Beleaguered Autism Mom. I am tired of dealing with people who just don't care.

Natalie

Thanks to the CONVID injection holocaust we'll likely see adults suddenly becoming "autistic". Just give it some time.

Vera Alexander

Well said, Cathy!

Yes, every April, the all-too-familiar puzzle comes out — again. Do we mourn an epidemic, or applaud strides in its wake? Do we celebrate all differences, or acknowledge the roadblocks some might cause? Given the autism’s varied manifestations — from superspeed intelligence to crippling cognitive deficits— it becomes difficult to connect allies, let alone the far-spread community of those most affected, around a singular message. Where do we go from here?

My older daughter, who was profoundly affected by her brother's autism, ponders this very question: https://www.statnews.com/2021/04/09/autism-awareness-acceptance-and-the-places-in-between/

Kate C

You asked for autism actions we have performed.
I started a soccer program for kids with asd. It has run for ten years now; it’s on hold because of covid.
I started and still facilitate a social group for adults with asd, again on hold.
When I was on the local school board, I was told by the Director that my advocacy was responsible for the establishment of the first high school class in our community for kids with asd.
I’m looking forward to hearing what others have done.

Jill in MI

It is no longer “autism awareness” or “learn the signs.” It is “Accept” and “Love.” As seen on a highway billboard... yes, just accept and love with kumbaya music in the background. Nothing to see here. Move along.

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