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Posts Tagged ‘Diagnosis’

Waiting for Dad to pull the car around. Will had not been outside in 11 days. Time. To. GO!

Time to go!

We are home. Well, we’re home at Marty’s house. Julia and Neville are spending one last night, each with one of my dearest friends, so Marty and I can have this one quiet night at his place, getting Will settled into his usual surroundings without the chaos of adding an excited little lunatic who would be barreling around the apartment, bouncing off the walls…or the dog, either.

It’s been a long road. The days blurred together in a haze of doctors, nurses, techs, therapists, surgeons, consultants, dietitians, social workers, hospital staff, and friends trailing in and out of Room 4539. When Marty called me on May 22 and told me Will needed to be admitted to the hospital, our pediatrician thought we would be there for a day or two. By the time we left Shands this evening, Will had been in the hospital for eleven days. In some ways, it felt like we were there forever; we fell into a bit of a routine and got to know the compassionate, talented staff. But for the most part, our time in the hospital flew by because we were so busy and worried. Will’s status changed by the hour, sometimes by the minute, and there were moments when I smiled and sang to Will through a procedure while wondering if he was going to die.

As good as it feels to actually have brought Will home, there were moments, I’ll admit, when I was afraid to do so. In fact, yesterday, I was reminded of The Shawshank Redemption, to draw a completely false parallel, when Red, who has been in prison all of his adult life, identifies himself as, “an institutional man.” “These walls are funny,” he says, “First you hate ’em, then you get used to ’em. Enough time passes, you get so you depend on them.” And while the hospital is certainly not prison by any means, we certainly hated being there initially, and we were not in control of how long we would be staying. As time went on, somewhere along the line, I started to fear leaving. What if I couldn’t learn all this tube-feeding stuff? What if we got home and Will refused the tube feeds? What if his “button” got infected or pulled out or if there was some other problem I didn’t even know could happen? At least in the hospital, there was help. There were people there around the clock, looking out for us. Here, we’re on our own.

All smiles on the short ride home!

All smiles on the short ride home!

I’m sure those feelings were exacerbated by the fact that I hardly left Will’s room, let alone the fourth floor. In fact, the entire 11 days he was there, I left the hospital for a grand total of about two hours. When we left this evening, I hadn’t been outside since walking downstairs for a few minutes with a friend on Tuesday.  It just occurred to me that that was six days ago. It’s not that I didn’t want to go take a walk or run to the store. And Marty certainly offered to take the night shift and let me go sleep at his place. But I just couldn’t leave. Partly, I was irrationally sure that something bad would happen while I was gone. But it was also simpler than that: every single person who works at the hospital is on a different schedule. The pediatricians, med students, surgeons, nurses, therapists, consultants, everyone. They all come … whenever they come. And if I were to leave for an hour and miss the pediatric team doing rounds, for example, that’s a big deal. I’m Will’s advocate. I’m the one who asks questions and explains his history and navigates the foreign terrain of medical-land. That’s my job. So I stayed.

Almost every night when Marty went home, I would go to sleep when Will did, or close to it, knowing we would be woken throughout the night and hoping to get a few hours of sleep in a row. And almost every day, I would hold Will still through blood draws or sing through tears during a procedure, or rub his feet and legs while he played with his iPods and high-fived the nurses.

Supply central. Of course, there's more stuff in the kitchen, and then there's the IV pole onto which the feeding pump is affixed and the formula bags are hung. It's new, but it'll get to be normal enough pretty soon.

Supply central. Of course, there’s more stuff in the kitchen, and then there’s the IV pole for the feeding pump and formula bags. It’s new, but it’ll get to be normal enough pretty soon.

Now that we’re home, there will be a new routine. We started it this evening by organizing all of Will’s feeding supplies and doing his first home feeding. We will get into a routine here, just as we did in the hospital. We will start taking turns working and tending to Will. Julia will go to camp. Neville will snore under the table. Life will get back to normal. A new normal.

Photo Jun 02, 10 50 20 PMAnd sooner than I think, Julia and I will go home to Kansas City, and Marty will live in this new normal with Will. And we will all miss each other. And I will cry more than I admit, knowing that my son is so far away, always feeling like part of me is missing, just as I know Marty feels about being away from Jules. But the thing is, we’ll do it anyway. Because no one is ever promised a problem-free life. We aren’t even promised a life. So when we get a second chance at it, when we come that close to losing it all, instead of focusing on the fear or the sorrow, we owe it to ourselves and our kids to live each day with pure gratitude for the opportunities to succeed, screw up, love, struggle, laugh, play, work, grow, learn, and simply BE. Because otherwise, what were those 11 days for?

 

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Will is on the couch fidgeting in his peripheral vision with a piece of frayed green yarn, artfully and very deliberately coated in masking tape by my hands under Will’s nonverbal instructions. Julia is watching Madagascar 3 for the thousandth time, and Marty, my soon-to-be-ex-husband and the kids’ loving dad, is in the kitchen blessedly making coffee. And me? I am at my desk, thinking about the article that ran about my little family in this morning’s Independent Florida Alligator.

Will was around 3 in this picture, but it’s one of my all-time favorites.

The reporter, Colleen Wright, a UF sophomore, showed up last week at my garage sale, having heard that my goal was to raise money so I can move to California where, while I don’t expect to arrive into some kind of Oz filled with free speech therapy centers on every corner, there are most definitely a lot more options and available, affordable, accessible services for a child like my son, Will, who, at 7 and a half, is nonverbal (we always say “preverbal,” because we remain hopeful) and has autism, OCD, sensory integration dysfunction, and a host of chronic health challenges. Wright questioned me for an hour that morning, respectful and inquisitive, but clearly with no background in autism.  (more…)

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I wish.

I’ve always been pretty organized. I’m just one of those, “A place for everything and everything in its place,” people. I like clear plastic storage containers and laminating label makers. I like hanging folders, color-coded files, and multi-sheet shredders. I like alphabetical bookshelves, DVD racks, and CD stacks. I like drawer organizers, shoe racks, and closets divided up by item type and sleeve length. I like knowing where the juice is in the fridge without looking and always having a spare Sharpie around just in case. I like all of these things. And I miss them.

Having kids changed my perspective on a lot of my organizational minutiae. It made me stop sweating the small stuff in a lot of areas, and it forced me to pick my battles as far as getting the family to comply with my hyper-organizational-ism. So, yes, it’s true that my daughter’s clothes are on pink hangers and my son’s are on blue and that I hang my kids’ clothes in sections: polos, tees, long-sleeved shirts, pants, jeans, shorts, skirts, and “other.” But it’s also true that they both get white freebie hangers from miscellaneous clothing stores and that there are completely weather- and size-inappropriate clothes throughout — and shoved in corners of — both their closets because keeping their wardrobes in check just isn’t a high priority these days.

Yeah, you parents know what I'm talking about.

I see quite a bit of this neurotic attention to detail and simultaneous disregard for perfection in Julia. She’ll insist on opening a drawer in her dresser to tuck in the miniscule amount of fabric from her pink tutu that got caught upon closing the drawer, and she cannot go to bed without putting the night’s book(s) back on the shelf. And yet, she’ll overlook her dolls strewn all over her floor and leave a Lego® minefield in the playroom just waiting to sabotage my bare feet.

I see it in Will, too. Will used to spend hours shredding sheet after sheet of newspaper until he found just the right strip to carry for hours or even days on end until it was soft as silk from constant handling. Or he would bring me a chosen piece of yarn and have me wrap duct tape (actively choosing over masking tape or Scotch® tape) around the end of it until it was just so. But then again, Will couldn’t care less about knocking every item off the bathroom counter onto the floor so he can stand naked on it and watch his iPod in the mirror. His room can be (and he often prefers it to be) strewn with his latest obsession, whether it’s ribbons or yarn or cardboard or newspaper.

Of course, it’s different with Will than it is with me or with Julia. I just like knowing where things are, so I have ways of making that happen and keeping our house running as smoothly as possible. But I can sleep if the jelly is on the juice shelf or there are towels waiting to be folded. Julia certainly likes her drawers neat, but she can leave the house without checking each one for protruding fabric. Will’s fixations, on the other hand, aren’t just quirky habits or personal preferences. Will’s behaviors are actual obsessions and compulsions because Will actually has obsessive-compulsive disorder (OCD). It comes with the autism territory. And it really, really stinks.

This is one of those things about autism that no one really tells you. True, as I learned about autism, I knew Will would have repetitive behaviors. I knew he would most likely lack that social filter that tells us which actions are (and are not) appropriate. But it wasn’t until I read about OCD as part of autism that it really clicked. I understood Will in a different way. I realized that his idiosyncrasies were more than his own peculiar preferences and desires. I saw that it wasn’t simply that he lacked social awareness and hence was free to indulge in his activities without concern for what others thought or a desire to conform. Suddenly, it made more sense to me why Will only eats from plastic spoons. White plastic spoons. And why he has to run in a circle around the driveway before coming in the house. And why he has to come out of his room at bedtime and watch his iPod in the oven’s reflection for a minute before going back to bed. This is OCD. These aren’t just “behaviors” he chooses to stubbornly engage in because he likes them and doesn’t care what we think. These are obsessions. These are compulsions. He doesn’t just want to do these things. He has to.

It’s an overwhelming thing, knowing your 6-(almost 7)-year-old has OCD. And severe autism. And of course then there’s the sensory integration dysfunction, cellular metabolism disorders, food sensitivities, and chronic digestive ailments. It’s quite a lot for a grown adult to handle, let alone a non-verbal child who doesn’t write or use sign language. I suppose it’s a bit ironic that, for someone who craves the order and calm of having each box and file labeled, having these diagnostic labels for my son was initially petrifying. Putting a name on any or all of Will’s traits and challenges made each more real. But now I see that the more I’m able to identify, name, and, yes, label, each of the individual issues that come together to form Will’s autism, the better I can understand him, and hence the better I can help, parent, and guide him.

Of course, it was also an overwhelming thing, 5 years ago this week, when Will was diagnosed with autism. It felt a lot like finding out someone I love had died: That paralyzing pain when his diagnosis was confirmed; the conflicting sensations of drowning in numbness while being assaulted by the migraine-painful assaults of every sight and sound; the denial and bargaining and grief. I remember that day. That hour. That minute. That very second. A sparkling crystal bottle of purple light slipped from the gilded shelf of my soul and shattered into stabbing shards for my heart to absorb while the light, with nothing left to contain it, slipped from my core into nothing.

In the Jewish tradition, we mark the anniversaries of the passings of those closest to us through rituals of prayer (Kaddish) and candlelight called Yartzeit. And so, every year on January 23rd,  I remember that day in 2007. It’s a bit like a Yartzeit for that shattered piece of my soul, for those dreams I held for Will, for the expectations I had of my little family’s future. I mourn my old life and the life I had planned. I mourn the days of being able to make sense of everything, of being able to create order out of any chaos with little more than a label maker and a scrub brush. I mourn the days of thinking it remotely mattered which shelf the juice was on or whether each light switch was labeled. I give myself that day to mourn and remember, and then I let go, remind myself to live each day with gratitude, and move on.

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Not long after my son Will was diagnosed with autism just shy of his second birthday, someone sent me this little bit of prose called “Welcome to Holland.” It basically equates having a special-needs child to having your travel plans messed up. Go ahead and read it. I’ll wait.

(Insert favorite muzak here.)

Done? Ok. So, when I first read “Welcome to Holland,” our whole household was in crisis. About to have Baby #2 (aka: Julia), we were grasping at straws, looking for any kind of comfort or hope or promise that there was some light at the end of this tunnel. No, not even that. I was just looking for someone to tell me we were truly in a tunnel and not, as I feared, in an inescapable abyss. In that desperate state, “Welcome to Holland” seemed like a really nice little anecdote. I thought it had been written by a parent of a child with autism (I was wrong), and I took her words to mean that things do get better with time and acceptance (I was right).

So, time passed, and my feelings on this changed. And by “time,” I mean about three weeks. And by “changed,” I mean that when I reread the Holland story, I thought something along the lines of, “Screw Holland. This story is a complete load of minimalizing crap.” From then on, whenever anybody started recommending I read this very lovely bit of Pollyanna-style, all-things-happen-for-a-reason, the-world-is-made-of-marshmallows, illogical bullshit, I simply declined. Pressed for my opinion on the essay, I said it reminded me of a religious answer to a scientific question: it sounds really nice and makes sense…if you don’t really think about it too hard.

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I remember the first time I “came out” to a stranger. I was at Target (as usual), and a woman said “hello” to Will and waited for him to respond. I said “hello” back for him, smiling and telling her, “Will isn’t being rude to you, ma’am. He has autism, so he doesn’t speak.” That night, I told my husband Marty about the exchange. I was incredibly proud of having publicly stated, to someone who didn’t need to know, that Will had autism. Doing so was a big step for me.

See, the thing about autism is that Will looks like everyone else (although, and I could be a teensy bit biased here, I do think he’s maybe a little cuter than the average kid). He “passes” for “normal” the way some of my gay friends used to “pass” for straight before coming out. People cannot look at Will and tell that he’s any different. And so I think it comes as even more of a surprise to people when I tell them he has autism.

At first, I didn’t want to tell people Will had autism because it was too painful. I would cry just thinking about autism, so I tried not to talk about it in front of Will. And I knew I didn’t have to tell people, given how Will blended in. So, in those first few months A.D. (that’s “After Diagnosis” in our house), I stuck to telling family and close friends. I even asked them to keep the news to themselves, not out of shame, but out of fear. I was petrified that a girlfriend would mention Will’s autism to another mom, and that I’d then run into that mom, say, at the park. I knew if I had a random acquaintance come up and give me her condolences (because that’s how it felt in the beginning; no one knew what to say except how sorry they were), I would completely break down on the spot.

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