Like many parents, I spend a lot of my day attempting to not sound totally nuts. For example, last Sunday I made an impassioned plea to the staff at my local YMCA:
“Has anyone turned in a hair dryer? It’s not a regular hair dryer, it’s a wall-mounted hair dryer, obviously it’s not mounted to the wall but we had to get that particular kind because my daughter got used to drying her hair at the YMCA using your hair dryers which really are mounted to the wall, I mean they should be…right? My daughter has autism and once she learns to do something in a particular way, she has to do it the same way every time so I bought her a hair dryer that looked like yours so we could dry her hair at home. She’s in the shower right now and we are pretty desperate to find that dryer as soon as possible.”
(long pause on the phone)
“I’ll look behind the desk….uh, no. Nothing here.”
“Ok, well, it is a wall-mounted hair dryer but it has polka dot tape on it–you know, to tell it apart from your’s–but I think I left the dryer there and it’s really, really important that she has it tonight because I can’t get another wall mounted hair dryer on a Sunday unless Wal-Mart has them….maybe…I mean we had to buy this one on Amazon because we couldn’t find it at Wal-Mart which was really aggravating because their website assured me that they were at in the store.Seriously, I usually don’t shop there, I’m not a Wal-Mart type of person but this was an item we really needed. Anyhoo, could you please look in the locker room.”
“Ok, ma’am. I will”
While I waited on the phone, my husband and I had a quick emergency meeting with her home health aide to decide how to deal with this situation. Since my daughter was already in the shower, the blow-drying routine would have to be tweaked on the fly because the YMCA reconnaissance mission would take too long. Usually, such breaches in protocol require lots of preparation but we could do this as long as we were all on the same page. When changing autism routines, a well-planned offense is a must.
When there is a surprise change in routine, the resulting behavior from my daughter can range from whining crying to horrible anxiety attacks to frightening tantrums. It can be circumvented with verbal updates and cues and sometimes she is fine. It’s a hope-for-the-best-prepare-for-the-worst scenario.
In that moment as in many similar moments over the years, I started to panic. Why didn’t I have a spare wall mounted hair dryer? Why didn’t I look for it earlier in the day? How could so many people be caused so much anxiety over a minor household appliance?
“Nothing here, Ma’am.”
I found it the next day when I went to look for it, in the ladies locker room at the YMCA right where I had left it.
It was one event, in one evening, one of several events that happen every week to me and everyone I know who lives or works with someone with autism.
In addition to living with my adult autistic daughter, I have worked for the past 15 years with individuals who experience disabilities and their families, securing and implementing treatment plans. I’ve seen the very best and, unfortunately, some of the worst people, places, and programs intended to help these individuals.
Indulge me in saying that when it comes to autism, I get about as much of the whole picture as one can get. So, my heart beats a little faster and I have to take a deep breath sometimes when I read some of the cavalier and smug posts from the rational vaccination folks on these sites and others.
The Wakefield paper was written in 1997, discredited only in 2004 and in my mind that was last week. So the MMR vaccine doesn’t cause autism, you know what does? No one knows. Not yet.
I know that the Autism Society of America has recently re-released a clear-as-mud statement about vaccines and autism. Maybe they are just baiting all of the scientists. Maybe they are all just stupid.
I don’t care what causes autism, not anymore. Not an issue for me. When I was pregnant with my last child, I did care. I cared quite a bit.
I did vaccinate my kids. The vaccinations for my son, born in 1997,were administered on a delayed schedule. Call me stupid, I just wanted to hear the kid talk before I gave him what was then considered a potential dose of autism juice.
My doctor is a medical practitioner in the same what that I am a parenting practitioner. Most of the time I take my doctor’s advice but sometimes she is wrong, sometimes she doesn’t have all of the information.
Many of you believe that this vaccine thing is a clear issue. It is not a clear issue, it is a healthcare issue and thanks to capitalism and science and our teeny tiny insect brains, there is no such thing as a clear healthcare issue. There are only healthcare quagmires.
We all deal with unknowns. We all deal with quagmires. And who knows about unknown quagmires better than former Defense Secretary Donald Rumsfeld who said it best:
“Reports that say that something hasn’t happened are always interesting to me, because as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns–the ones we don’t know we don’t know. And if one looks throughout the history of our country and other free countries, it is the latter category that tend to be the difficult ones.”
Ok, a Rumsfeld quote? Now I really do sound crazy, but all of his politics aside, as Mom always said, “Even a stopped clock is right twice a day”.
In my mind, the vaccine/autism issue was succinctly summed up in a Facebook post by my friend and fellow autism parent, Ed Plunkett, who mostly keeps quiet about such controversies.
So encouraging to see so many likes and shares amongst the converted. Not many convincing arguments being made….Have a great time here, keep posting the nonsense and I’ll keep living in a serious reality that some of you will never really experience.
Well said, friend.