November | 2013 | Autism Moves Out

Archive for November 19, 2013

Holiday Overload

November 19, 2013 / Kathleen Williams / No comments

One week from Thanksgiving. One week and one day before Black Friday bleeds into Brown Thursday (stores open at 6 pm!). It’s time to bake the bird and then start hauling out the tinsel and garland and strings of lights. Time to dust off bad holiday sweaters, 18 different versions of “Silent Night” on 18 different holiday albums, and family traditions while counting the number of shopping days left. Time to panic about how little time is left to get it all done. Time to bounce between looking forward to so much of it all while wondering at the same time when it will finally be over.

Really not that different from CJ’s point of view, that last part there. He has a special relationship with the holiday season, sort of like when Dumbo had a special relationship with that bottle of champagne and got pink elephants. For us, Christmas is a combination of stress and joy. For CJ, it’s an annual ticket to a roller coaster of sensory overload.

We’ve learned so much over the years…survival techniques that give CJ a fighting chance to enjoy some of the holidays without being buried in stress and confusion. Not everyone around us understands or approves…after all, our traditions are not all “traditional.” Autism can color our family’s red and green another shade entirely at times, and looking at it from the outside in, one might be tempted to write us off as spoiled or frustrated or inept or unpolished or undignified.

So, as CJ’s advocate, translator and shield, I’ve developed my own little holiday tradition. To friends and family each year, I send out a letter from The Other Side. It’s one that’s been posted on sites all over the Internet. I have no idea who wrote it originally, so I can’t give credit, which is a shame, because it’s worth crediting. The letter was an eye opener to me the first time I read it, even though I’m in the thick of things and you’d think I’d get this by osmosis by now. It’s a timely reminder as we go about our business that the holidays are not just a time of giving and receiving, they’re also a time for a little extra patience and understanding.

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Dear Family and Friends:

I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which make it difficult for me to adapt to my surroundings.

Thanksgiving & Christmas are some of the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort.

Sometimes I may seem rude and abrupt, but it is only that because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by okay. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard. When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you-I am not. Rather, I am hearing everything and not knowing what is most important to respond to.

Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.

If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people–I just have to get up and move about. Please don’t hold up your meal for me–go on without me, and my parents will handle the situation the best way they know how. Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky-I literally cannot eat certain foods as my sensory system and/or oral motor coordination is impaired.

Don’t be disappointed if Mom hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things–just please be patient with me, and understanding of how I have to cope.

Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown-ups call it “self regulation,” or “stimming’. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this “perseverating” which is kind-a-like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.

Please be respectful to my Mom and Dad if they let me “stim” for a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents’ feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.

Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. I am a unique person–an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you’ll try to view the world through my eyes!

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This letter has changed our lives over the years. I hope it will make your holidays just a little smoother as you hit the stores and parties.

Category: Bound & Determined /

The Big Top

November 7, 2013 / Kathleen Williams / One comment

Johnny Cash and June Carter Cash laid down a music track in the 60’s that made rock and roll history when they recorded “Ring of Fire.” And it wasn’t just any old fiery ring. It was a “burnin’” ring of fire. Seriously off putting. A serious warning.

I always thought they were talking about the heartbreak of passionate love gone wrong, involving months of emotional recovery, and maybe a trip to the doctor for antibiotics. Turns out, they were talking about dealing with the State of Florida and the Social Security Administration.

I tend to think of the government as a three-ring circus, as a matter of routine. Except there’s, like, several thousand rings: Congress, the legal system, HUD, DOT, the IRS, the DMV and of course, the SSA, to name a few. At some point, all of us will be called upon to perform in one or more of these rings. It’s called “doing one’s civic duty,” otherwise known as “avoiding prosecution.”

And how does one perform, once in the ring? Why, by jumping through hoops, of course. Big hoops, little hoops, hoops between two high stands, high hoops, low hoops. And if it’s your misfortune to be called to interact with the DMV or the SSA…burning hoops.

Burnin’ rings of red tapey fire.

Of course, at the circus, it’s all cute little acts with cute little dogs (even cuter if they’re rescue dogs). Once in a while, you get ponies or even lions and tigers (no one mentions if these are rescues, but they must be…only people run away to join the circus). And big, small, tooth or claw, everyone is jumping through hoops.

Sometimes I feel like one of those animals. Except not so cute. And there’s no rescue in sight.

Ring 1: We hire a lawyer to draw us pictures of all the hoops we’ll be jumping through to become Guardian Advocates and mapping out the order of the jumping. We fill out all the documents. We pay all the fees. We dance. We sing. We wait.

Tah dah! We are officially Guardian Advocates for CJ! Nice jumping!

Ring 2: The GA paperwork comes back. We’ve passed. We’re in the club. Except now we’re told that we have to take a class. A class. Well…why not? Why wouldn’t we have to take a class? I mean, we’ve only been CJ’s parents for 18 years. Of course, we didn’t need a class for that. But now they require a class, so a class we’ll take!

It’s a hoop. I jump. I go on line. I call. I email. I knock. It turns out that in the entire central Florida area there are exactly two locations to take this class. Okay…I can drive. Oh but look! There are exactly two dates between us getting the paperwork and the deadline for the class. If we do not take this class, we are in contempt of court. Poof! Burnin’ ring!

I am told by our attorney’s office and the people who conduct the classes that the courts are usually not really strict on it. Yeah, I’m sure you’re very nice people, but…let’s just not take that chance. Because if you look up “Poster Child” in the Burnin’ Ring Guide Book index, there’s a blank spot just waiting for my picture. Just what I want to be, the one case that they decided to be strict with. Kathleen Williams, “The Accidental Example.”

So…I sign us up. Us. Oh yes, my husband and I BOTH have to go. And look! If we go together, we can save $50. Apparently, you can put a price on togetherness and it’s the price of your desire to be alone less fifty bucks. I make arrangements for childcare. Medium hoop. My husband takes off work. Little hoop masquerading as a big hoop. We jump. We pose. Man, look at how nicely those hoops are lined up!

Then I get the phone call. The class date has been moved. Poof! Burnin’ ring!

The message on my phone states: “The class has been moved to 10/31. Don’t worry. No costumes are required.”

Costumes??? What on earth does that have to do with anything? Can you imagine the picture in my mind, given my circus idea?? I finally calm down and realize that day will be Halloween. Obviously, my sense of humor is gone by now, scorched by the fiery hoop in front of me. There is nothing I can do. It’s the government. I call my husband. “Switch your day off! Immediately!!!” I call my friend. “Can you switch everything you already switched around to help me with childcare??” I call the government a few names, in private. Then I break down. I am DONE!

No, I’m not.

Ring 3: Social Security Disability. The Social Security Administration wants proof of CJ’s disability. Our paperwork plus the doctor’s paperwork isn’t enough. They want living, in-the-flesh, proof that Autism isn’t just a fancy word for defrauding the US government. As a US tax payer wanting to know my tax dollars are being well managed, fair enough. As a wife, mother and imminent Foundation founder with a calendar too fat to fit in my purse any more, give me a break! But hey! It’s a hoop! Uncle Sam says jump, I say “how high?”

Hoops, hoops, hoops. We fill out the paperwork. I send in all the documents. We get a phone call to set up an interview. That morning, I take CJ out of school. As I roll to the appointment with CJ muttering and commenting continuously in the car seat next to me, clearly with no idea that our financial lives are basically on the line, I work myself into a quiet state. Will he pass? I mean, will he fail? Will he pass by failing? I mean…wait…and could they possibly evaluate CJ and determine that he is NOT disabled and tell me to ship him off to the Marines or something?? Poof! Burnin’ ring, jumbo sized!

I am sure that I am going to have a full blown panic attack now. But in to the SSA we go. If anyone notices the smell of my well-singed imagination, they are too polite to mention it. The funny thing is, the SSI people have all been nice. I mean really nice. Really, really nice and very, very helpful. The people on the phone. The person who did the interview. I was shocked, frankly. They all have such a horrible reputation for obstructing and denying. But it was all fine. I did not have a panic attack. CJ was not shipped off to the Air Force. Now what? Now we wait. Of course we do. “They” will notify us of any additional information they need. “They” may want us to have an independent evaluation. OK.

Oh look! Another hoop.

Back home, I ask around. I’m told by everyone who has any experience with this process that once they get the doctor’s notes, they usually drop the request for the individual evaluation. In fact, I can’t find one person I know that actually had to go through that. We, however, are special. We have to do it. Our reputation as prodigious hoop jumpers must be getting around.

I get a letter in the mail on Wednesday stating “they” have scheduled an appointment for us with a doctor at 3 PM the next Tuesday, approximately 30-45 minutes from our house. OK. Here we go again. Pull CJ out of school. But what to do with Elizabeth? She gets out of school at…you guessed it…3 PM.

OK, fine, I’ll jump. I’ll pull her out of school early and bring her with us. No…no, I won’t, because the paperwork specifically states that you may NOT bring any children with you to the appointment and you may only bring one other adult with you. The longer I thought about that, the weirder it got. I assume the prohibition on extra kids is to keep distractions out, but the extra adult? Would that be to hold CJ down or to talk me out of my tree? Maybe it’s to hold the now-flaming hoop of this appointment.

I call my friend, again. Help! She says she will pick up Elizabeth and keep her until we are done. And when will we be done? The paperwork says to plan on “several hours.” I must admit to some grim laughter at that one. If we start at 3 PM, we’ll be cutting into CJ’s dinner time by 4:30 or so. Good luck with that one, Evaluator Doctor Person. One flaming hoop, right back at ya.

I am thinking it may not take that long once they meet him. If you’ve met CJ, you’ll understand.

I call the SSI office. I speak to the woman who was nice, but a little short with me the last time. She confirms that they have received all the paperwork from the doctor, yes, but it was not enough to make a decision. Why not? Well, she can’t even tell if the woman who wrote our letter is a doctor. Um. Yes. Yes, she is. It clearly states “MD.” RIGHT ON THE LETTER WHICH WE ARE BOTH LOOKING AT RIGHT NOW. But…whatever they want. We will do it. We will see their doctor. Please. Just stop flicking those Bics.

Ring 4: I’m told CJ needs to bring his photo ID. But he still doesn’t have one. Why not? Because it’s the DMV and why stick your hand in a meat grinder before you have to? Now I have to. I quick make an appointment with the DMV (by definition, a burnin’ ring of fire) for the next day, still undecided if he should go for the driver’s license or just get an ID card. (Who knows? Christmas is coming. Maybe we should get him that truck after all. If they decide he’s not disabled, he should be able to drive, right?)

Off we go to get the ID. It takes less than 25 minutes in and out the door. No fire, no burn, only minor jumping. The best part of all is when they show us CJ’s photo, and he announces loudly to the entire room, “I love it!” (It only took 2 takes. THAT might be a record.) I look at the photo guy who’s smiling. “I’ll bet you don’t hear that often,” I say. Once again, CJ is making them all smile.

Ring 5: Next stop…the SSI doctor to determine if he can work and support himself. The SSI worker said the evaluation might take “several hours.” I figure about five minutes should do it.

Send in the clowns.