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No Extra Charge

December 4, 2013 / Kathleen Williams / No comments

Church.

It’s a powerful word. Most of us have some experience with church. Most of us have expectations about what church means, how it sounds, what it looks like, who should (or maybe some think shouldn’t) be there. Pastor, preacher, priest, the music, the message, the crying babies, the hands in the air, the sitting, the standing, the interesting outfits and sometimes more interesting hairdos, the sleepers, the clock watchers, the litany, the liturgy, the sermon, the communion, the mass, the scripture, the bathroom breaks, the hymns, the call to the altar.

So far, I’ve never heard anybody mention the autism.

CJ and church. It’s an interesting combination. Not the first place you’d think of, or the first choice you might make when figuring out how he should spend a Sunday morning. Think about it. A church experience makes sense to you because you’ve been exposed to it and you understand the reasons behind it. But any religious service is going to be a strange, confused event to someone from another religion or culture. Now imagine what it must seem like to someone with autism…another planet. It’s a weekly trip to sensory overloaded irrationality.

It’s required patience, persistence and occasionally a change of church to get us to where we are today. When CJ was a toddler, we were asked not to bring him to the nursery of the church where we attended at the time. They just weren’t equipped to handle him in there. Of course, I wasn’t equipped to handle him in the main service either. But, we are determined church-goers, so keeping him at home really wasn’t an option for us as someone would have had to consistently miss church. So we gritted our teeth and prepared ourselves to be the inevitable center of attention and let the chips fall where they might.

I have done an informal poll. It seems that most organized religious groups are pretty tolerant of this sort of thing. They are glad you’re there. They usually want to help. They just have no idea what to do.

I know the feeling.

CJ has grown to enjoy church, something I never would have expected. It’s not always easy for him to contain or control himself, but he seems willing to put up with our expectations that he sit in one place and keep the comments to himself as best he can. In return, he gets the worship music.

You’d have to see CJ during worship. There is no way to describe it with words. We attend a “contemporary” service (drum set, guitars, etc). He knows most of the songs by now from church and from the radio. The music starts, and so does he. He starts out slow. Soon, he may sway side to side. He’ll usually sing, and he’s always off by a beat and behind by a word. If you stop listening to the congregation and start listening to him, it will screw with your brain, and I’ve seen it happen to the people around him. If the song is a lively one, he will start raising his hands. While there are some people at our church who raise a hand or two quietly in a moment of great communion, we’re not exactly a Pentecostal hotbed of hosannas and hand waving. CJ did not get this memo. If he’s moved enough to put his hands up, he’s going to wave down showers of blessings even if it clears out the pews around us. And if it is a particularly inspiring song for him, he will start dancing. David danced before the Lord, and so does CJ. Sometimes, I’m tempted to hand him a tambourine, just to see what would happen.

Our musicians are known as “the Worship Team,” and whether they like it or not, CJ is their biggest fan. If they ever go out on tour, I’ll have to buy front row tickets. When they gear up to deliver the musical message, CJ has been known to yell out “Hit it!!,” more than once. To their credit, The Worship Team doesn’t usually react. Once or twice I have seen them caught off guard and someone will crack a smile.

Nothing will ever beat Easter Sunday a couple of years ago. It was standing room only in the church, as Easter often is. Halfway through the service, I looked over and CJ was literally dancing in the aisle.

I have asked other parents of kids with autism. Most have had at least one negative experience with a church. Of course, churches are filled with imperfect humans. We once had the minister of a different church we were members of at the time make a comment in the middle of the sermon about the occasional noises CJ was making. (In his defense, he did call me to apologize later.) But most of those parents have had wonderful experiences in churches, too. My friend’s nonverbal son was even allowed to have his Bar Mitzvah.

I’ve learned now to look for and expect the best from the people in our church, and to forget the sour notes. As soon as we are sure that we have scared someone new away, or annoyed an older person, those same people come up to us after the service and tell us how much they enjoy watching him. OK. If you’re going to take something on faith, where better?

My comment to the poor bewildered new people sitting around us is always, “There is no extra charge for the additional entertainment.”

Most leave with an extra smile.

Category: Laugh...or Else /

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.

Category: Frustrated & Irritated, Laugh...or Else /

Define “Selective”

September 20, 2013 / Kathleen Williams / No comments

I just registered CJ with the Selective Service.

Let’s take a minute to think about that.

The law requires all male citizens when they turn 18 to register with the SS. Granted, the law says “all,” but don’t you kind of assume that “all” wouldn’t include anyone with legal paperwork in hand that says he won’t be assuming the duties and responsibilities of being an adult due to disability?

Apparently not. I wouldn’t have given it any thought, except for the part on the Guardian Advocate paperwork that said that we had the authority to register him for Selective Service. THAT set off an alarm bell in my head. Huh?? Why on earth would I do that? Wait. What? Register who?

We have gotten several cards in the mail from the Marines, as well as from several colleges all trying to recruit him. My husband keeps threatening to fill out and send back the cards to the Marines and see if we could work something out. (Insert wink, wink here.)

So I did it like I do so many other apparently absurd things when it comes to CJ. The SS expects it. It is a rule. Heck, it’s a federal law. Plus, it just plain takes too long to explain to some bored government employee on the phone or apply to get the exemption.

The information was basic. I didn’t realize that you didn’t really give them any personal information. I did it on line. And I learned a few things.

www.sss.gov states: “Disabled men who live at home must register with Selective Service if they can reasonably leave their homes and move about independently. A friend or relative may help a disabled man fill out the registration form if he can’t do it himself.

“Men with disabilities that would disqualify them from military service still must register with Selective Service. Selective Service does not presently have authority to classify men, so even men with obvious handicaps must register now, and if needed, classifications would be determined later.”

Let’s see….

1. Reasonably leave home and move about independently. Check.

2. Friend or relative to fill out paperwork. Check.

3. Obvious “handicap.” Check.

Classification to be determined later. I wonder how much later. Maybe after 8 weeks of bootcamp, a long overseas ride in a cargo plane and some time in a trench? This is starting to sound like a “based on a true story” TV movie waiting to happen. Tom Hanks would be involved somehow.

Go for it! CJ with a gun….make that an military-issued automatic weapon. Admit it. You have never felt so safe.

Category: Laugh...or Else /

Shave and a Haircut…plus Teeth

August 1, 2013 / Kathleen Williams / 2 comments

Recently, I was cutting CJ’s hair and giving him a shave, and it suddenly occurred to me that this was one more weird thing in the strange little world that is our Normal.

CJ has sensory integration issues. A few years ago, I would have put that phrase in quotes. Now, I won’t bother, as more and more people have become aware of what that is and that many children struggle with these peculiar sets of disconnected perceptions. Many people now know of the kid who can’t bear the top seam of a sock across his toes, or the wind from a fan blowing across face or legs, etc. Even the corporate world has gotten wise in a few cases. T-shirt manufacturers have started making shirts with printed tags instead of sewn-in tags. (This is great for the kid who would otherwise pitch a tag-induced fit and proceed to claw his shirt off in the middle of church, but not so great for moms everywhere trying to read the washing instructions in the tattered stamp of a well-worn Angry Birds XXL.)

Everyone has worn a scratchy shirt they couldn’t wait to get home and take off. Most will wait until they get home to actually disrobe, however. Everyone has had someone yank on their hair too hard. “Ow!” or “Excuse me, not so hard!” usually stops the offender and life goes on.

Not if you have sensory issues. A scratchy tag or a pull on the hair can produce an instant “fight or flight” response and you can find yourself running after your child with autism in the middle of a church sermon or struggling to put his clothes back on in the aisle at Walmart. On a really bad day, you may find the entire contents of your garage scattered across five or six of the neighbors’ yards while the police walk up your driveway with professional smiles on.

Haircuts. Tooth brushing. We take them for granted. Now…imagine that getting a haircut is actually physically painful. Imagine that brushing your teeth can actually hurt.

Welcome to CJ’s world.

When CJ was very young, we had a neighbor who was a hairdresser. She would cut his hair with scissors while he was in a swing or in his high chair. It worked. But as he got older, it wasn’t as realistic. For a little while, we had someone who would come to our house. Then I tried taking him to professional places a few times. One visit ended with me pinning him to the floor in the middle of the salon while the stylist attempted to finish. I can’t describe to you the end result but it was one-of-a-kind. Later, we had a neighbor who cut her boys’ hair and she would do CJ’s as well. For some reason, with her he tolerated the clippers in short doses even though the buzzing would drive him crazy if anyone else tried. I didn’t question it and thought of it as a gift from the Haircutting Gods. When she moved, I was once again at a loss. Then CJ told me that he wanted me to cut his hair.

????

I do NOT cut hair. No, no no no no. I knit, I craft, I cook, I bake and I’ve even been known to laminate stuff. Hair? Okay, french braids…I’m all over that. Pony tails and head bands…sure. But actually cutting? We did not own clippers. I had no idea what to do. Just…no.

But…the alternatives were a child who looked like a refugee, plus pointed, disapproving stares in public, and a monthly wrestling match at Super Cuts (if they’d still let us in the door), or…clippers. So I bought a set and learned. Never let it be said I can’t be moved by the twin motivators of public embarrassment and saving money.

At first, I needed something to practice on, and I can honestly say that this was the only time I have ever wished we had a dog.

Here’s what I now know: if you cut on a #1, it lasts longer. If you do a #1 all over, it is less noticeable if you screw it up. CJ has curly hair and mistakes are hidden better that way. We are all about the #1 cut at our house. Some cuts go pretty well. Some cuts do not. He does NOT sit still. Therefore, giving CJ a haircut can be something like shearing a sheep. Grab, wrestle, grab some more, twist, throw a leg over if necessary, ignore the loud complaining and avoid actual bloodshed. We have had a few interesting results. Luckily, hair grows back, though his grows a little too fast for my taste.

Sensory issues don’t end with hair, however. There’s the matter of oral hygiene, a daily torment for both the child with autism and the parent with a child with autism. In CJ’s world, a toothbrush is a weapon and Mom is a marauding dental demon.

When he was little, I would pull his comforter up to his shoulders with his arms under it and pin him down with my knees on his shoulders. When he screamed, it was my chance to jam the toothbrush in and start brushing. I was big, he was small, and I was tired of chasing him around the house each day. You’d have thought I was wielding a chainsaw instead of a Colgate-laden toothbrush. Of course, as far as CJ was concerned, it was about the same thing.

That was SO much fun.

NOT!

Now, thanks to the miracle of years of occupational therapy, he has learned to tolerate much more these days. Brushing we can do, but he still cannot get his teeth cleaned at the dentist. He has to be put under general anesthesia to have any dental work done. Insurance doesn’t like that. I don’t like it. CJ doesn’t like it. I don’t even think the dentist likes it. Certainly my wallet doesn’t like it. But there is an amazing organization called Grotto that will pay for dental work for persons with developmental disabilities. They covered all of our out of pocket expenses more than once, and CJ has managed to keep all his teeth so far.

Except for his wisdom teeth, which had to come out last year. He did really well. He has an amazing ability to heal ridiculously quickly. Like, superhero/vampire quickly. That works well for us, as the prospect of a 17 year old, 200 lb teenager with autism running around or trying to eat with bloody holes in his jaws is enough to make me hide in my locked bathroom with a Kindle and a week’s supply of food.

My new least favorite sensory overload activity is shaving. CJ is nearly 18. There’s more hair now, and the bearded Victorian look hasn’t come back in vogue yet. (I keep hoping)

Shaving involves razors. Razors are sharp. Picture me, CJ and a razor and use your imagination. Go electric, you say? Ah, electric razors work, but only so well (the closer the shave, the longer we can go to the next shave, you see) and they vibrate…so you see where this is going, and we are back to the sensory issue. Shaving a moving target is even more interesting than cutting the hair of a moving target…and you can’t go a month or two in between.

Luckily, so far, CJ has only been nicked a few times. Most have been minor and I take full credit for my new, deft shaving skills. But once it was my fault and it was on his lip. Anyone ever get a cut on their lip? It bleeds like you’ve sliced an artery. And it does not stop bleeding. I know they say that “head wounds bleed,” but they didn’t say for how long, or what you can do with it while it’s happening. Together, CJ and I have discovered that if you flail around and carry on like a wounded dragon, you can get blood on your shirt, your towels, your bedding, other people, the cat, and anything in the general vicinity. If anything suspicious ever happens in my house and they bring in one of those ultra violet lights they show on crime shows to look for blood, I’ll be put away for 20 years with no hope for parole. Clearly, they’ll say, there was a murder in my kitchen, and they’ll start digging up my backyard.

Luckily, I have witnesses to what actually happened…my daughter, who is underage, and the cat, who isn’t talking.

Category: Bound & Determined, Laugh...or Else /

Screw Loose

June 15, 2013 / Kathleen Williams / No comments

Feels like forever since I last posted. It’s that time of year.

So, what’s been going on? Well, we had an IEP meeting at the end of the school year. I finished and mailed off the paperwork for the application to become CJ’s Guardian Advocate. And I dealt with the yearly renewal for benefits through the State of Florida’s Agency for Persons with Disabilitites (APD).

This year we had to provide additional documentation. Things got interesting. We had cashed in some savings bonds I found in a file drawer that were in CJ’s name. He cannot have more than a certain amount of money in his name by the time he turns 18, as that would screw up the Guardianship application, so I knew they needed to be cashed in ASAP.

Of course, we all know that when you loosen a screw in one location, the universe is obligated to tighten a screw somewhere else. It’s a cosmic law or something. So APD now had to make sure that CJ didn’t have too much money. Fair enough. However, they had to make sure he didn’t have too much money RIGHT NOW…as in, right away, as in within days.

Tick tick tick tick.

My favorite part of dealing with them is the math. The letter they sent was dated 5/22. The letter stated that if I did not get the requested information to them by 6/3, his benefits would be cut off. (Oh, they will do it, too.) I received the letter on 5/25. Naturally, it was a holiday weekend. The soonest I could do anything was 5/28.

I ran around calling places, calling people, holding the line and then holding some more. Calling APD, calling the bank. Since my husband is the parent listed on CJ’s account, Chris had to run down to the bank on his lunch hour to sign mysterious paperwork and then he had to fax everything to APD the next day. We got it all faxed on 5/30. By 6/3, I had nearly recovered from the experience. We can now officially say that CJ does NOT have too much money to do anything more than buy Air Bud DVD’s on sale.

Then we went on vacation.

Next week, I have a meeting scheduled with a company that runs group homes for people with varying needs, several of which are owned by foundations. I am searching the community for people who are already doing what I’m planning on doing, even if their end goal is different than mine. I am currently working on a very long list of questions, as I still have a lot to learn. After this meeting, I expect to be a lot closer to launch date for CJ’s House.

It seems that no matter how much I get done, my “to do” list just gets longer. There is a light at the end of the tunnel. There’s no train, but it just seems that the hurdles are getting more and more visible.

See you at the next jump.

Category: Bound & Determined, Guardianship, Laugh...or Else /

The CJ Factor

May 30, 2013 / Kathleen Williams / 2 comments

Furniture shopping. In a typical “typical” household, it’s an idea that would usually put a smile on the mom’s face and make the dad groan out loud.

Furniture shopping! What does it make you think of? New colors? New style? New material? So many possibilities! Of course, you also need to consider how the furniture is going to be used, especially if you have kids and/or animals. Will it be lightly used in a more formal area? Or can it expect crumbs and crayons and cat hair with a bit of Wii and Playstation wear and tear?

No matter what you decide, you’ve earned it, right? A solid five to ten years of family use has worn out your current sofa, and a bit of redecorating has left your choice from 2001 looking a bit outdated as well as reasonably used. It’s time to go shopping and do it all again. Right?

Not in our house. Not any more. When you share your living space with a 200 lb 17-year-old autistic boy, your criteria change.

We shop for furniture that can withstand “The CJ Factor.” This includes function, durability, and the “Flop Factor.” And then there’s the matter of slime.

According to Dictionary.com, “slime” is defined as:

1. thin, glutinous mud.
2. any ropy or viscous liquid matter, especially of a foul kind.
3. a viscous secretion of animal or vegetable origin.

Bingo! I can tell you that in our house, slime is usually all that, plus food and unwashed hands. It can coat furniture, appliances, TV remotes, iPads, bathroom tile, door handles, dashboards, bedsheets, computer keyboards, toys, books, window blinds, refrigerator handles, little sisters and the cat. Slime occupies me at some point every day. In our house, slime (and its removal) is a big, big deal.

Our first furniture shopping trip

Salesperson: Now, over here, we have a large, comfortable leather sofa that seats four, with solid wood frame construction and a lifetime guarantee on all parts. It’s available at a low, low price of only six mortgage payments.

Chris: What did we decide about this, Kathleen? Are we going for the expensive furniture that will stand up to the “CJ Factor?” Or do we go less expensive and plan a trip to the dump in one or two years?

Salesperson: The…CJ Factor??

Kathleen: How well will this upholstery stand up to slime?

Salesperson: *……*

Kathleen: Is slime damage included in the guarantee?

We elected to get the cheaper version. We figured we’d get maybe 3 good years out of it. It stood up to the CJ-created slime pretty well. We soldiered on.

Did you know that the springs inside a couch can actually come out? Seriously, one day about a year later, I was looking at the couch and there was something sticking out from underneath it. A piece of metal. A spring. UGH! Next thing I knew, there were more. We were now at the point where the “new” couch was slimed, the seat cushions were drooping (there are no springs left, after all), and there’s no place to sit. This makes it interesting when you have people over. I just make everyone sit in the kitchen with me.

We realized we’d accounted for slime but forgotten to really think about “The Flop” factor.
The Flop: The Flop is when your 200 lb son just “flops” onto the furniture with all his dead weight. As in, stand next to the unsuspecting furniture, suddenly flip your body sideways and land like a log falling from a height of four feet. Again. And again. And again.

I have heard furniture scream.

Last year, we decided to have Thanksgiving at our house. Picture a total of 12 people in 1350 square feet of space. (My ideas are always bigger than my house). We can’t ask our guests to sit on bare springs. So my husband insists we buy couches. We decide on quality this time, with a lifetime warranty. “What,” we ask, “about the slime factor”? “What about the flop factor?” We are assured over and over that our mortgage-busting selections are guaranteed. Warily, we proceed through the showroom to the order desk.

Then it hits us. A CHAIR! A chair? Yes! We get him his own chair! We get him a well-built, flop-resistant, slime-resistant recliner chair…a chair that no one else is allowed to sit in. In return, he is not allowed to sit on the couches. We shop with glee and bring home some new furniture.

CJ loves the idea. We prepared to shop for his new chair, but didn’t even have to buy one. Someone listening to me gloat about our fabulous idea offers a well-made used rocking recliner in good shape. It even matches the new furniture! He loved it. We loved it. It’s ability to withstand The CJ Factor wasn’t clear but we had high hopes.

Not too long ago, I was going about my daily routine, cleaning and desliming, when CJ performed “The Flop,” into his chair. There was a groan, a pop, and the chair cracked in two like a nut. Luckily, CJ was fine, since I was falling on the floor myself with tears in my eyes from laughing. Calling 911 would have been a stretch for me at that moment.

Now he has a new chair that matches the couches. He told me the other day to “get out of my chair. Sit on the couch.” Well…at least one of us is following the rules….

Category: Laugh...or Else /

The Good Old Summertime

May 23, 2013 / Kathleen Williams / No comments

Summer time is almost here. The kids are ready. The poor teachers as SO ready. Even I am a little ready for the craziness of all the activities to stop for a while. Every parent knows that the bad part of summer is “What am I going to do with these kids all day”? That’s normal. Typical. My neurotypical daughter is going to a cheer camp to learn how to flip some more, because you can never flip too much. She also has big plans with friends to swim at their houses and play outside. I plan to let her.

Summer with CJ, however….

We learned a long time ago that staying in a hotel with CJ is basically impossible. It packs us in too close together. Eating out is not an option most of the time either. It’s funny. I thought money would be the issue. That it would be too expensive to stay at the nice hotel. Too expensive to eat out for all our meals. Nope. The problem is that it just plain doesn’t work.

CJ gets up as early as 4:30 AM on a daily basis. Yes, you read that right. Being autistic means being all about The Schedule. Vacations, weekends and days off mean nothing to someone who is “on a schedule”. He HAS to have his medications as soon as he gets up or we will all suffer that day. That means one of us is up at 4:30 AM, rain, shine or insomnia that ended at 3:30 AM. It’s irrelevant. What’s relevant is the prospect of a day with CJ, unmedicated (Him, not me). It’s nice that we can now stagger into the kitchen, give him his medications, give him something to eat and then stagger back to bed. Mercifully, he will now entertain himself. If there is more than one room, we can sleep in one and he can watch TV, etc. in the other. But does anyone with a budget and an autistic kid “on a schedule” have the funds for more than one room at a hotel? Not if we want to eat too.

That said…eating out….NOT fun! The time has to be exactly right. The food has to be just right. If it is, we eat. But once CJ is done, he wants to leave. Now. Immediately. He’s done. We’re done. Doggie bags and unpaid checks? Irrelevant. Oh, CJ is personable and funny. The servers always love him. He has nice manners and thanks them. But when he’s done concentrating on eating, the sensory overload from the restaurant becomes too much. Time to go. He’s done.

Call me fussy, but I don’t want to get up at 4:30 AM to get dressed and go out to eat. If we have a condo, at least we can cook in our robe and slippers. And maybe go back to bed. Sometimes, I am not thrilled with cooking, etc. on vacation, but hey!…if we get a vacation, it’s worth it. We live in FL, so there are lots of options here. We prefer the beach on either coast and try to make that work. We just have to remember that when CJ is done…he’s DONE.

The newest, greatest thing I’ve recently discovered is a youth group called “Capernaum”. It is run through Young Life Ministry and is designed for special needs kids. The kids meet at a local church the last Friday of each month. They get dinner (CJ’s favorite part), sing songs, fellowship and have a short lesson. (When I ask about it, he can usually only tell me what they ate.)

The very best part about Capernaum is that they have summer camp.

Let me say it again. Summer camp. As in….SLEEP OVER SUMMER CAMP!!!!!! It is 4 nights! 4 whoollle nights! (Don’t get me wrong…I love my kid, but my husband and I love each other too and we occasionally need a break.) Last summer was the first time CJ went. He didn’t really want to go and I was really nervous. (I won’t elaborate on what made me nervous. If you have an autistic kid, you’ll already know, and if you don’t, you’ll think I’m borderline crazy.) He did great and he had a great time. He didn’t even blink when he went again for a weekend in January.

This summer, we are trying for a new day camp. The problem with “special” kids is that the older they get, the fewer and fewer options there are for summer activities. I have seen two posts on Facebook in the last week from people looking for ideas for their middle schoolers with special needs. These kids have been turned down by places that can’t accommodate the specific disability. The parents work. There are few options. I had someone tell me that they are paying someone $250 a week to watch their almost 20 year old son for the summer. Summer vacation here is 11 ½ weeks long. I counted.

That’s a long time. That’s a lot of money.

Of course, the very worst part of summer is that “the routine” is messed up. DO NOT mess with an autistic person’s routine. I have had CJ standing in the driveway crying because the bus wouldn’t be coming over Christmas break.

As we speed toward the end of the school year, I am reminded once again of the “can’ts”.

Category: Laugh...or Else /

Let Him Eat Cake

May 22, 2013 / Kathleen Williams / No comments

CJ’s birthday is in August. The dog days of summer. Years ago, we went on vacation to a condo at the beach with a cool pool right around his birthday. We told him that the vacation was for his birthday. We had a cake and celebrated. Fun for everyone. Why not?

I didn’t think much about it after that. The next year, CJ wanted to know if we were going to “the condo” for his birthday. Sure. Why not? When we did go on vacation that year, it was “for his birthday.” We had a cake. Everyone was happy.

Now, his birthday begins the first time we do anything for any type of vacation during the summer. Staying at my mom’s place counts. A trip to the beach counts. We go…it counts. One year, he managed to have 3 different celebrations with 3 different cakes. Oh, and there is NO singing. Not sure why. From his first birthday on, he cried whenever anyone sang. If it was just me singing, I could completely understand it, but apparently he just doesn’t like “Happy Birthday.” It may be a “key” thing, but since other people cry too when I sing, I wouldn’t know.

A couple of years ago, he demanded (and got) balloons. Another time, he told us to all hide and jump out at him and yell “surprise!” We did.

He LOVES his birthday. No matter how many times a year it comes. It cracks me up every time.

It is not even the end of May and he just yelled to me from the other room. “No singing!” What??? “No singing.” “For what??” “My birthday”.

OK. I’ll get right on that.

Category: Happy To Be Here, Laugh...or Else /

Autism-Appropriate?

May 12, 2013 / Kathleen Williams / No comments

As I talk to more people and look over the first entries for my new blog, I’ve started to realize that if you are not in my situation, it may sound like I just want to get rid of my son. Actually, to some degree. it’s the exact opposite.

Yes, I want him to move out. I want to make sure that he is taken care of. I want him to be safe. But I also want to make him as independent as possible. I want him to have his own life.

When I read things other people have written, I realize once again, that if you are not in this situation, wanting an autistic child to move out may seem unkind or unloving.

People are so, so careful around me when it comes to stepping outside of the safety of an autism-appropriate serious and supportive attitude. I understand why…I really do. But hey! Come on! This is me!

I was making jokes while posting on Facebook. On CJ’s 16^th birthday, I posted “Happy 16^th Birthday! Should we get him a car or a truck?” I thought I was hilarious. (of course, I usually think I am hilarious) Most comments I got back were super nice. “Happy Birthday” “Hard to believe he is that old”, etc. A couple of brave people made jokes, but I mean only a couple. One person told me in person that he thought we should get him a motorcycle. Now THAT was funny! I complained to a friend that no one seemed to think I was as funny as I thought I was. She said that “unless you are in that situation, you are not allowed to make fun of (or joke about) that situation. “ I guess she was right. That’s kind of depressing.

When they are little you tip toe carefully around trying to figure out diagnosis and treatments for other people’s kids. It’s such a fragile, delicate time. When they are older, you just say “what exactly is his diagnosis”? And funny. By then, people are usually fine with answering questions and almost relieved to talk about it. They are often craving information as much as you are.

I have discovered that in this world, people are usually more than willing to share information. Nothing is sacred. People will discuss doctors, medications, Baker Acts, schools, and Therapists without blinking.

But just try to get them to laugh with you.

It is a strange little world growing all too big, but it is my strange little world.

Category: Laugh...or Else /