LIFE IS A SPECTRUM

Some days, living in the gaze of my gorgeous children, I really wish that life had a rewind button. Or at least that button on the DVR remote that lets you jump back 30 seconds: "Wait! Ignore that last thing I did! I can do better!"

Yesterday, we were coming out of the McDonald's drive-through where I managed to keep my cursing at the price of two cokes and a small fry under my breath for the most part. Billy gets a treat when he does particularly well at therapy or school, and inevitably, the treats he asks for are "Coke" and "Fry-Fry" (French fries). He could easily say "French fry" at this point but we continue to say "fry fry" in our family because we think it's cute ... and to be honest, half the time I forget that it has a different name. I even once, flustered, asked for "fry fries" at the drive-through.

So we're coming out, stopped at the red light, and I'm juggling my Diet Coke and my cell phone charger. And I see a man out of the corner of my eye, holding a sign and clearly asking for money.

A million things run through my mind at a moment like this, and all of them make me sound a little crazy. I worry that if I start rifling through my purse for money, the light will turn green and I will hold up traffic. I worry -- I kid you not, this goes through my head -- that other cars will think I'm showing off. I worry that I'll get his attention and then find that I don't have any cash. I worry, to a lesser degree, that the person might be dangerous and try to car-jack me. In broad daylight. In front of all these cars that I'm sure are bad-mouthing me for being a self-righteous show-off who holds up traffic and is kind of asking to be car-jacked.

Well, yesterday I came to my senses and realized that I had just spent nearly five bucks on two cokes and a small fry, and this guy might not have anything to eat. This might be one of those moments when I could talk to my kids about giving to others. So I scrounged up a couple of dollars, tapped my horn, and saw out of the corner of my eye that he was walking over.

"Billy," I explained to my son, who was happily stuffing his mouth with fries and slurping on his Coke in the back seat, "this man doesn't have any money for Coke or fry-fries, so why don't we give him some? We've got plenty."

"We've got plenty," he repeated, seeming to agree.

The entire time, I had never really looked at the man, and by that point, he was at my car window. I looked up, into his eyes, and I froze.

He clearly had Down's Syndrome. What was a mentally challenged person doing begging for money in front of McDonald's? I was outraged -- at someone, though I didn't know who. Weren't there people who were supposed to be taking care of him? Wasn't there an agency in charge of this?

But all I did was reach through the car window, hand him two bucks and drive away. After all, the light had turned green and people were starting to blow their horns.

As we drove off, Billy looked back --at the man, I guess -- and said something like, "No coke."

The whole drive home I was edgy and unsettled. There was a time when my greatest fear was that my autistic son might end up unable to care for himself as an adult. It certainly happens, and there are plenty of parents who deal with that nightmare thought every day. Now we're pretty certain that Billy is going to be fine, to be able to communicate normally and catch up with his peers within a couple of years. And even if he were more severely challenged, God forbid, he now has a loving sister and two beautiful cousins who would never, I know, let him end up alone.

I would love to tell you that by the time I got home, I immediately sprang into action and tracked down the relevant agency or homeless shelter and got that man some help. But I didn't.

By the time we got home, I was more concerned about the fact that Billy had emptied his fries all over the back seat, Willow was screaming bloody murder and needed a diaper change and life went on.

In fact, I forgot about him. I forgot about him all afternoon, and all night, and until this morning, when I was emptying the trash and saw the McDonald's bag, I hadn't given him another thought.

I immediately thought of all the things I could have done, a million ways I could have helped and shown my kids that some things are more important than a honking horn or fries in the back seat.

But the morning bedlam of the Broadfeet had already ensued and we were frantically trying to get Billy's breakfast, listening therapy, Floortime and dressing completed before the 8:10 a.m. go-to-school deadline.

After he and Dave were off, I did finally manage to call someone. There is a church across the street from that McDonald's, so I looked up the number and gave them a ring. When I explained what had happened and asked that they keep an eye out for the man, the lady on the phone was very nice. She said she knew just who to call and would see to it that someone got him the help he needed the next time he showed up.

I hung up the phone, relieved. Was I relieved because I believed the man was getting help or because it was now someone else's problem? Hard to say.

I write a lot about autism advocacy and for obvious reasons, Dave and I are very motivated to help kids with challenges get what they need and deserve. But adults with mental challenges need advocates too. They aren't as cute, and they may be harder to help sometimes, but I got a well-needed wake-up call about just what happens when they slip through the cracks of the system.

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Setting an Example

I have often discussed this very thing with other ASD parents; if the statistic that 1/150 kids have ASD is accurate, then how is our society going to cope with the special needs of so many people 20-30 years from now? I worry about EJ b/c he does not have siblings or cousins, just a small, tight-knit group of adults who love him more than life. We are currently changing our will to set up a trust for him and we have also changed some of our retirement goals to include a fund for him that he can access when he turns 25. We still have a 529 plan that we contribute to for his college, but we also recognize that we would be remiss if we didn't set up something to make sure that he will ALWAYS be provided for, financially speaking.

I think one of the most worrisome things about having a child with ASD is that we know that we are not going to be able to kick our baby "out of the nest" when he turns 18 or 21 or ever! Suddenly, our ages and our health habits take on a whole new dimension because it is not just about us getting him to independence at 18; it is about getting him to independence (one day) AND making sure he will always have someone to watch over him when we are no longer able to.

Living long and well

That is such a good point about how our age and health habits take on new significance. David and I have been talking about that same thing. We need to keep ourselves as healthy and active as long as possible so we're there for him as long as he needs us to be.

We're planning to have a financial planning meeting soon too, now that we've got our house-buying out of the way, so hopefully, we can get prepared for the most extreme scenario and know that no matter what, both our kids are cared for. It's a horrible thing to have to consider, but it has to be done, and parents of ASD kids can't afford to wait. It's not just a matter of "Who will take care of our kids if we're gone" but also, "Is that person educated about ASD? Capable of dealing with everything that goes with it? On the same page with us about goals, etc."

Thanks so much for sharing your experience.

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Floortime/DIR is our primary therapy protocol for Billy. "Protocol" makes it sound like something instigated by Jack Bauer at CTU, but the great thing about Floortime is that it's more of a "big picture" view, inside which you can continue with speech therapy, occupational therapy, which we're also doing.

Developed by Dr. Stanley Greenspan, Floortime/DIR therapy (DIR stands for Developmental, Individual differences, Relationship-based) is all about creating moments of joy during which you communicate with your child on their level, following their lead. Rather than try to force them to perform a series of tasks, like stacking blocks or sorting objects, your goal is to get the child to connect with people, to desire to communicate. And you create that desire by following their joy.

For instance, if Billy wants to open and close doors repeatedly, rather than try to stop him from doing that, we open and close doors with him. And when he's comfortable with us playing side-by-side, we take it to the next level, creating a "playful obstruction." Dave created the "Open the latch, Daddy," game, putting his own hand on the door, and requiring Billy to ask him to release it, thereby bringing him into the moment.

A couple of great things happened as a result of adopting the Floortime mindset: We surrendered the frustrating process of trying to get him to stop opening and closing doors (which upset him and us) and we connected with our child. I was amazed at how much fun it was to open and close doors the first time those big blues eyes looked up to me and Billy smiled as if to say, "You like this too? Isn't it great?"

We want to teach him that it's more fun, fulfilling, desirable to be connected to people than it is to be lost in his own world. And over the past few months since we first read Dr. Greenspan's book, Engaging Autism, at the suggestion of our occupational therapist, Kathy Merydith at TMH, we have seen huge strides in Billy's connection to people.

He has started reaching out to other children on a regular basis, wanting to play with them, rather than by himself. Some of his social skills need a little honing, but after all, he's still just three years old.

If he runs into another room in the house, he'll call, "Mama, where are you?" In the past, I wasn't even sure if he thought about me when I wasn't there. He regular takes my hand and demands, "Play castle," meaning he wants me to come with him and play with the fort he got for Christmas. And then a few weeks ago, completely unprompted, he threw his arms around me and said, "I love you, Mama."

Now let me put up a big warning sign here: I can't say that Floortime caused my son to say "I love you." We're doing a lot of things, and also, he's getting older. One of our primary frustrations is trying to figure out what works, what doesn't, what therapy (or lack thereof) is resulting in a particular behavior, either positive or negative. Within our Floortime "big picture," Billy has speech therapy (3 times a week at school and once a week in private clinical setting), occupational therapy (once a week at school, once a week private), therapeutic listening (twice a day, 30 minutes per session), music therapy (once/week) and Kindermusik (www.kindermusik.com, therapy for the whole family!).

When I say these therapies operate within the Floortime big picture, I mean that we make sure our goal in every setting is to encourage his connection to people, create moments of joy, and develop his ability and desire to communicate.

That being said, Floortime works (at least, for us) and it works every time. I know that, because my son looks up at me, joy on his face, and makes some new gain in communication every day. Because we're doing the things he wants to do -- opening doors, playing fort, sifting dry rice through our fingers, riding the roller coaster that Nan got him for Christmas (what kid wouldn't like that?!) or simply running around the yard non-stop screaming, "He's getting away!" -- because we're following his joy, he wants to communicate. As a side note, he's almost completely stopped opening and closing doors, opting instead for more creative play.

The upside to this therapy: you can see almost immediate results, depending on the severity of your child's communication challenges and neurological issues, however subtle. Because Billy is highly functioning and very verbal (though most of his speech is repetitive), we get a lot of immediate reward and feedback from this therapy; I can imagine it would be significantly more frustrating with a non-verbal or non-responsive child. By all accounts it will still work, but the gains may be slower than what we've experienced.

More upsides: you can practice Floortime anywhere, as long as you are engaging your child, following their lead and expanding their communication; and once you learn the basic theory, you can do it yourself (essentially, it's free -- the only "training" we have at the moment is a careful reading of Dr. Greenspan's book), but it's certainly more effective if you also have an OT or other therapist skilled in Floortime who can help coach you during sessions, brainstorm new ideas, etc. Both our OT and speech therapist are Floortime-trained, and we also regularly turn to our virtual friends on the Yahoo! Floortime Group with questions and for support.

There are also a couple of great websites that offer training, online and DVD-based, message boards, documents that can help you with everything from preparing for your IEP meeting to locating a Floortime-trained professional. Floortime.org is the website of the Interdisciplinary Council on Developmental and Learning Disorders, founded by Dr. Greenspan and Dr. Serena Wieder and is really just a wealth of great information. StanleyGreenspan.com also offers courses in child development, a selection of Dr. Greenspan's books, and information on the latest research and articles published.

OK, now the downside: If you follow Dr. Greenspan's guidelines, you'll be doing eight Floortime sessions per day, 20 minutes per session. That's in addition to school, organized therapy, etc. I can't say that we hit that goal every day, or even most days. Also, you're supposed to work toward four play dates with a peer each week. We're not there yet either.

Sometimes the book can be a bit vague about how to accomplish certain goals, like how do you follow the child's lead if he keeps flitting from one activity to the next? How exactly do you know when your child is ready for more imaginative play? When it comes to these kinds of specific answers to some of the vague generalities in the book, I've always found the answer in my kid. And to his credit, Dr. Greenspan says that when in doubt, take a step back and watch your child. What is he doing? Where is his joy?

Our plan is fluid, dynamic and ever-changing. But for the first time in a long time, I feel like everyone on our team (and they're a wonderful group) is working toward a common goal. And at the center of that goal is a beautiful, intelligent and thoroughly fascinating child named Billy.

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billyjammies

Keeping Billy clothed at night has been an ongoing battle. Within 30 seconds of us closing his bedroom door at night, he can be completely undressed, pull-ups off and singing merrily about the whole experience. We have gone through this cycle for hours at a time at night, and then restarted it at about 2 a.m. if he happens to wake up to use the bathroom.
The first step was giving up on two-piece pajamas and going with zip-up footie pajamas, which came increasingly difficult to find as he got bigger. But we've found, with the help of family and friends who are always on the lookout, size 5 and 6 footies. (Billy is 3, but tall for his age.)

Obviously, once he's totally potty-trained -- and we're making significant progress on that front -- this will be less of an issue, but for the time being, we had to find a solution. We were laundering complete sets of bed sheets and blankets as much as a couple of times a day.

The zip-up jammies worked fine to start, because he didn't have the fine motor skills to operate the zipper. Well, that didn't take long. On the off chance that you're currently eating your breakfast or lunch, I won't describe what we encountered the first day we found out he could operate a zipper. The horror ... the horror.

So then we moved to a diaper pin skillfully inserted through the zipper pull at the top and pinned to his jammies. Within three days, he could unfasten the diaper pin. Even more remarkable, one day we came back in and found him out of him pajamas, naked, with the PJs stretched out on the bed next to him, pin still fastened at the top. I guess little Houdini shimmied out through the neck opening!

Thanks to the great advice of my fellow bloggers at Both Hands and a Flashlight, we tried putting a shirt -- one size too small -- on over his jammies, which were still pinned at the top, underneath the shirt. Success for almost a week!

Then Billy learned to reach under the shirt, unfasten the pin without looking, unzip his jammies (while still wearing the shirt), step out of the feet and remove his pullups. He would run around the room, trailing the jammie feet behind him like a half-dressed Superman. And I was starting to think he actually did have super powers. It also occurred to me that perhaps we should notify the school that we could check off "fine motor skills" on his IEP and consider that goal "achieved."

After redressing him three times last night, I had a thought: turn the pajamas around backwards, zipper going up the back. But then, I thought, the feet wouldn't work. So I cut the feet out. I also cut a little notch in the neck so the neckline wouldn't be uncomfortable for him.

So I redressed him, pajamas on backwards, zipping up his back, pinned at the top with a diaper pin. Small shirt went over his head. And he laid down and went straight to sleep. And slept through the night!

I'll keep you posted, but if he gets out of this set-up, we're taking him on the road.

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Necessity is the mother of invention!

Sounds like we had one advantage in that the J-Man hasn't quite grasped the concept of zippers yet. The bulk of the fleece sleeper + long-sleeve shirt makes it hard for him to reach in there anyway because it's all bunched up, but the zipper is small and a bit stiff too. So between bunched-up sleepwear, a difficult zipper, and a few fine motor challenges, his nighttime ensemble either proved too much for him to Houdini out of or he just gave up on it. We had thought about the backward sleeper solution, but like you we'd have to cut the feet out and since he refuses to wear socks and it's cold in the house, we put that idea aside for the time being. Besides, he was getting out of his sleepers without unzipping them (!), so we were skeptical backwards would have even worked. The long sleeve overshirt was the revelation for us - born from desperateness turned epiphany one night. Seems like both of us engineered good solutions right for our kids. Yay for us!

Taking off pajamas

Take a look at the Little Keeper Sleeper. They make zippered back pajamas from size 18-24 mo to 5T. Their locking system and non stretchable neck prevent escaping.
Check it out at : http://www.littlekeepersleeper.com

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Two

2 = The number of hours of sleep I got last night.
2 = The number of sick children I currently have.
2 = The nights in a row that Billy has had nightmares.
2 = The number of times I can read "Goodnight, Blue" without wanting to throw myself into traffic.
2 = The number of episodes of Damages that are now, unwatched, saved on my DVR.
2 = The time I just set on my alarm clock as I head off for my nap.

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5. Craft projects from Dollar Tree
I thought I had really found a deal: three Valentine-themed craft projects for $1. At Michael's, a similar package would have cost $5 or more (I know, still not a fortune, but we're talking about something that will end up covered in glitter glue and probably stuck to the furniture. Not something I want to spend a lot on.) Anyway, I open the package of red and pink foam hearts and the room fills with the scent of cat urine.There is a reason why this costs is $1. And I'm still ripped off. No one wants a pee-scented Valentine.

Some things at the Dollar Tree are a good deal: Ziplock bags and greeting cards (check for misspellings). Steer clear of craft projects and anything with the word "meat" on the label.

4. Our renter
We're maintaining two mortgages at the moment, because we couldn't sell our house in Sunny Hills (another dislike: the real estate market) before moving to Tallahassee. We managed to rent to a guy who works at the prison (did we mention our old home was prison-adjacent?) who has complained non-stop about petty crap, been late with the rent every month and now has informed us this week he's moving out -- without paying his last month's rent.

If you have money problems, nobody understands more than us. I can put up with late rent, because the Lord knows, I've been late with mine in the past. But don't complain about the "taste of the water to me" as an excuse for not paying it. (By the way, anybody know any prisoner relatives with dull taste buds who might like to rent a house?)

3. Bad Dreams
Our family has been beleaguered by sleepless nights this week. Billy, in particular, like his mom, occasionally suffers nightmares. It breaks my heart, because he can't tell me what he's dreaming. He did (milestone!) manage to tell me one night "Dream!" when he woke up crying, so I think he's starting to understand what they are. I wish I knew what scares him.

My dreams are generally anxiety dreams: A recurring dream is that I'm performing and forget the words to a song. This week, I was in a bridesmaid's dress, aboard a jet ski, driving toward a volcano where my friend was getting married. I was late for the wedding, and I had forgotten the words to "The First Time Ever I Saw Your Face." I also honestly dreamed once that I was being chased very slowly by a murderous Thomas the Train (see #2 below).

Dave doesn't have bad dreams. In fact, he usually wakes both of us up laughing. On Tuesday, he dreamed that we hired Mick Jagger to do carpentry work. I won't get into the details, but suffice it to say that Mick Jagger is crap at home repair.

Evil Elmo

2. Demon-possessed Toys
My car is haunted by a missing toy cell phone. I know it's in there somewhere only because every time I hit a speed bump, I am greeted with the little ditty "Shave and a hair cut - two bits!" And somewhere in Billy's room "Evil Thomas" is hiding. This is a battery operated Thomas that decides to come to life between 2 and 3 a.m. and emit a sinister "chooooooo chooooooo" sound over the baby monitor.

The Elmo phone even looks demonic: It used to have cute Elmo eyes perched atop it, but my teething children scraped away the whites of his eyes, revealing the red paint beneath, making him look like Chucky's furry cousin. Occasionally, we will hear -- from somewhere in the house -- the phrase "It's Elmos's turrrrrn," in this creepy deep, battery-dying voice.

And this week's greatest dislike is ....

1. The three pounds I've gained since I stopped nursing.
Gone are the days (months, nearly a year ... sigh) when I could eat anything -- and I mean anything -- and not gain an ounce. Don't get me wrong; I'm not thin by any stretch of the imagination, and if I'd been truly motivated, I could have used the last year to LOSE more weight. But anyway, back to stupid dieting and step aerobics. Boo!

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