Monthly Archives: March 2022

Behavior Plan For Parents of Newly Diagnosed Autistic Children

A vitally important read from 30 Days Of Autism By Leah Kelley, for those who want to understand and be a true ally and friend to autistic people. This goes for both autistic children and adults alike.

Do not exploit us and share videos and blogs about our most vulnerable moments, when we are having meltdowns, when we are in any kind of distress. You would not want your most vulnerable times to be broadcast to the world.

It is about seeing our neurology, and our humanity, full-stop.

Thirty Days of Autism

Behavior Plan For Parents of Newly Diagnosed Autistic Children:
  by Lei Wiley-Mydske

Your feelings about autism are constructed by living in a world that fears and stigmatizes disabled lives.  Your distress about an autism diagnosis are most certainly because of these unhealthy messages.  Please remember that your behavior in regards to your child’s diagnosis is a choice.  Signing this behavior plan means that you will always put the dignity, autonomy, and love for your child above buying into the dominant narrative of tragedy or the belief that autism is something that the Autistic person is doing to you.

  • I promise to never use my child’s most vulnerable moments for sympathy or to “raise awareness”.   I recognize that I am my child’s safety net against an often hostile world.  When I feel like sharing, I will ask myself if this is something that I would want others to share about…

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Being Punished For The Right To Live

It’s getting harder and harder for me, a full-on neuroqueer, neurodivergent Autistic adult, to handle going to in center dialysis anymore because the blowups just keep happening.

Four hours a day tethered to a machine, 3 times every week, I do this just to keep on living.

Even after educating them about autism and meltdowns, what they are and aren’t, they still revert back to calling it “behavior” and want to treat me with traumatizing ABA-style “behaviorism” that simply Does. Not. And. Will. Not. work with autistic people.

One cannot pray or behaviorize our autism away because we are hardwired autistic from birth to our final breath.

Autism is a Developmental Disability. It cannot be fixed and cured.

It is always when my nurse and or tech are hectic-busy with other patients and I happen to need help right smack dab in the middle of it all, that tempers tend to flare on all sides.

No one is being bad, no one’s to blame, only that dialysis clinics are often far too hectic paced in nature, and oftentimes fuses just get short on all sides.

I had a meltdown so bad today because

1) Nurse W was there—right in plain sight of me today,

and

2) my room acoustics were not there for me to sing to and enjoy.

(I love to sing to the tune of the room acoustics and call them my “chestnuts” because of how they resonate in my ears and calm me down to hear them—all rooms have room tones, this is why people like singing in the shower)

They were flattened out due to the computer station being moved, changed them so I could not hear them anymore

—my nurse got impatient with me, and I melted down—

—-and because I melted down, they had to take me off the machine and send me home after just 30 minutes on the machine, because I was hitting my head and hitting my chest area.

This is why I keep writing to educate all of you who do not know, how much we are disabled, not by our autism itself, but by the ignorance and impatience that we still get from non-autistics.

So you all will know what to do and say to keep a meltdown from happening in the first place.

I don’t fault my nurse. I fault the fact that there needs to be four nurses per side instead of two, and even more techs than there are per patient. When a dialysis clinic is short-staffed,. even the best angel can lose their patience.

How about just letting dialysis patients all have private rooms with each of us having a dedicated nurse and tech, instead of just lumping us all in side by side by side??? Like some clinics in Europe do?

But still—I have educated this clinic till I am blue in the face, and I still encounter these blow ups. These same and very preventable blow-ups.

Nurse W was abusive. She was all levels of abusive and gaslighty. But she still works there, so I still have to see her from time to time.

But my current nurse does not seem to have even one mean bone in her body.

She happened to be dealing with a new patient today, and because I had flat room acoustics, my anxiety went sky high, and I kept pushing my call button. She finally lost her patience, and scolded me. This led to me blowing up right into a meltdown, complete with hitting myself—I was mainly shocked that my usually mild-mannered laid back nurse was scolding me, when I know she knows how pervasively deeply that affects me.

Below is the poem I wrote to my social worker and to my nurse and nephrologist:

I am sorry, I apologize

I was not feeling well enough today

To be able to remain calm and controlled

In my dialysis chair

In the past two weeks I have discovered

that my chestnut noises are more resonant

and full-sounding

when the computer station is set a certain way

straight, against the wall

I am sorry I couldn’t wait

I am sorry I kept pushing the call button

when you were all busy

I am sorry

That I cannot get along with you all like I would like to

I do happen to love and care about you all

I am not there to cause any of you hell

I am in hell

because this clinic is not made for autistics like me

I do those chestnut noises all during my treatment

to keep myself from having anxiety and then meltdowns

Please understand that

I was upset because all of you kept pushing the computer away

and when you do that

I lose my noises

I am sorry that is so important to me

I like and wish to God In Heaven

that all of you would all like me

and get me

that is all I ask

That you all will learn to get me, please

Please listen to me,

see me,

hear me

I have to have these treatments

so I can live

So that I do not die

Please stop scolding me when I have a meltdown

I cannot help those

I can promise you

They are not a thing I choose to do

If you scold and judge me during a meltdown

It will escalate it and make it go to me hitting myself

I am trying

to educate you on what autism IS so you know

Because of Today I really want to quit dialysis

Not because it’s self pity

but because I cannot always be what you expect me to be

I have bad days

I have days when I have zero spoons

I am tired of going there

because sometimes you are too busy to give me what I need

Tired of making you all angry at me

for what I cannot help

I just am so tired…………