Category Archives: Uncategorized

Save the Post Office!

Truck driving away with mailboxes taken from sites in Oregon State

Folks with disabilities often vote by mail–especially if they lack transportation or have mobility issues. We need a properly functioning post office, with all the machinery needed to sort mail quickly, and with allowance for overtime pay, so that postal workers can make sure ballots get returned on time. The current postmaster general has pulled out and destroyed hundreds of sorting machines, so that they can’t be replaced. He removed many mailboxes (exact number unknown), before the media found out what was going on and public opinion stopped him. And he’s stopped paying overtime to postal workers so that they can put in the hours to get mail sorted and delivered on time. I think this is not “good management,” but rather a blatant attack on mail-in voting. Give us back our post office!

Graduation!

Beloved older daughter has finally completed all the course work she needs, and is scheduled to graduate from college at the end of this month! Of course, there won’t be an actual graduation ceremony because of the pandemic. But she has ordered a cap and gown, so we will at least be able to take pictures of her.

It’s been a long and difficult haul for her, but she persevered. I’m so proud.

“Re-homing”

There’s been a lot of controversy about Myka Stauffer and her husband’s decision to “re-home” their adopted autistic child. Today in the Washington Post Katherine Sanford did a version of the traditional “walk a mile in their shoes“ argument in their defense. To her credit, Sanford mostly blamed the lack of social supports for parents of special needs kids, although she also managed to get in a few whines about how hard it is to deal with a non-verbal 13-year-old in diapers.

Well, guess what? I’ve already walked the mile. Been there. Done that. Wiped the feces off the wall. Bandaged the bites and kicks. And I say it’s time for parents who either gave birth to or adopted a special needs kid to stop thinking about how hard it is for them and start thinking about how hard it is for their kid.

These kids have minds—even if their thoughts are concealed by their lack of speech. They have hearts—even if you can’t recognize their feelings. They hear what you say to them and to others, and react to it—even if you don’t understand their reactions.

Stauffer’s son has already been rejected by one set of parents in China. And now he’s been rejected by another set in the U.S. So what do his mind and heart tell him about this? That he’s worthless. That he’s so bad that adults just can’t stand to keep him around. It’s not ok to do that to a kid. Any kid. Autistic or not.

Autism and COVID-19

Powerful words from Carly Fulgham

Friday night, March 27th, I told my husband, “If I get COVID-19 and have to be hospitalized, don’t tell them I have Autism.” The next morning I woke up angry that I had to say that so close to the 30th anniversary of the Americans with Disabilities Act. March 12th marked thirty years since eight-year-old Jennifer Keelan abandoned her wheelchair to crawl up the steps of the US Capitol building to prove that people with disabilities deserved an equal chance in life. Thirty years later, it’s still an acceptable option to consider us less.

Doctors in Italy are “having to make hard choices” about who is worthy to get treatment, with age and disability being part of the discussion. I’ve heard these tough choices are being debated from Washington state to Alabama as well. When this ethical conundrum comes to my town, I hope that our medical leaders remember that in many cases, disability is just a label, and should be used as a criteria no more than race, religion or gender.

In addition to my autism, I have asthma that is bad enough that I have a greater chance of needing a ventilator. If I am so sick that I’m in the hospital, how are they going to know that besides the “Autism” written on my medical chart, I’m a wife and a mother to a two-year old? A Vice President at one of the biggest companies in America where I’ve just won a Global Diversity & Inclusion Award? A volunteer member of the Board of Directors of Autism Society of California, The Art of Autism, and Autism Society of America? The volunteer President of Autism Society of Ventura County where I’ve increased our program offerings more than tenfold in four years? How will they know all this when I’m alone and too sick to explain why my life matters?

Do you think I’m different from other people with disabilities? That my accomplishments make me the exception and not the rule? That my family will care about my survival more or less than another’s? When we’re desperate for oxygen, we all look the same. The only differences are the labels on our chart, like our disability and our age. We expect our medical professionals will not discriminate based on race, religion, language, age, or disability during normal times. We cannot abandon the basic human right to live now, no matter what label we wear. I’ve still got a lot more to give to this world.

I’m not done yet.

Civil Rights for Nonspeakers — Ido in Autismland

The traditional term for not speaking is ‘dumb.’ That says it all. If someone can’t talk then they are ‘dumb.’ I am dumb, apparently. The thesaurus offers these synonyms for dumb: among them mute, speechless, silent, and then fifty additional synonyms for stupidity, including the colorful pinheaded and dim-witted. The bias equating intelligence with speech…

Civil Rights for Nonspeakers — Ido in Autismland

SHE’S OUT!!!!

After six months in three different psychiatric hospitals, my darling daughter is finally out and living at home again. She still suffers from PTSD (made much worse by the hospitals themselves), but at least she is able to be with her family and her dog, see her friends, and breathe the open air.

We are SOOOO happy!

Six Days in the ICU

I mostly write about my older daughter–the one with autism–in this blog.  But younger daughter has her problems too, and last week they became acute.  She had been feeling off for about two months, with a persistent cough and fatigue.  But then about ten days ago she called up and asked me to take her to the E.R.  She was extremely pale and her tongue had a green (!) tinge.  I got her there, they took one look and started the process of admitting her to the hospital.  She was extremely anemic, and had a startling low number of platelets in her blood.  Two days later, she was transferred to the Intensive Care Unit at Barnes Jewish Hospital in St. Louis (where, I have to say, they have been absolutely fantastic with her care).

The immediate problem was an extremely rare (2 cases in every million people–lucky us!) blood disorder called Atypical Hemolytic Uremic Syndrome, in which the immune system attacks the blood.  She had to have repeated transfusions of blood and platelets, as well as an extremely scary drug that is the best treatment for AHUS, but increases the risk of contracting Meningitis by 1,000%.

After six days of intensive testing, during which she got sicker and sicker, they determined that the underlying cause was Lupus.  Once they started treatment for that, there was an immediate improvement.  She didn’t have to have lots of pain medicine and she could eat without vomiting.  Last night she was visited in the ICU by a therapy dog.  She was able to get out of bed and hug him, which made her (and us) burst into tears.

In short, the chaos continues here in the Midwest.  But what a relief to have her feeling better.