Sunday, September 29, 2013

On autism and ABA and assholes

I just got back from one of my favorite places on Earth, the annual Florida Association for Behavior Analysis conference. I don’t talk much on here about what I do as a profession, but after having a few days to think, I now want to put into words some of my feelings.

First, some background:

I graduated with a BS in Psychology, a minor in Sociology, and a certificate in Criminal Justice from Mississippi State University in 2002. (Go Dawgs!) I immediately entered Florida State’s program for Applied Behavior Analysis and became a Board Certified Behavior Analyst in 2004 soon after earning my Masters.

During my undergrad years I worked as a tech in an acute psychiatric ward for adults. Throughout grad school, I worked doing in-home ABA with children with autism, in Head Starts with children with behavioral disorders, in preschools doing standardized assessments for a federally-funded research project, and then my last practicum, working with adults with post-acute traumatic brain injuries, turned into my first post-graduate job. I worked in TBI rehab for several years before switching to a position providing community-based services to adults with intellectual disabilities with behavioral issues that make accessing the community and being independent difficult. I currently provide in-home services to adults and children with intellectual disabilities/developmental disabilities and accompanying behavioral issues that interfere with their daily lives.

I love what I do. I love the clients I serve and the families and staff who support them. I love the science I stand behind. I love the perspective behavior analysts have that not everyone understands, but that we can see so clearly. I love being a behavior analyst.

I can still clearly recall some of those “AHA!” moments I had during grad school, when some new concept that had once been foreign to me suddenly made perfect sense. I remember watching my in-laws interact and suddenly understanding the laws of behavior didn’t just apply to children with autism. I remember using what I learned in class to train my dog to do fun tricks and shape my husband’s dish-washing behavior. I remember that day I really, really understood that ABA could change the relationship between countries and religions and cultures, change the work force, change the educational system, change the way children learn to be adults, change the world… And I still, with 100% of my being, believe this is true.

But still, at every conference for behavior analysts I attend, we have seminars on gaining acceptance. On why we’re not appreciated as a discipline; on why everyone doesn’t see what we see and understand what we understand... And suddenly I have much more to say about it.

As most of my blog readers already know, I gave birth to my older son in April of 2008. We knew upon his birth he would likely suffer from lifelong disabilities, and I began teaching him the only way I knew how immediately after he was born at 23 weeks gestation. I would withhold verbal praise when he desatted on the ventilator. I would praise him and give firm pressure for a good heart rate and tell him how proud I was of him. I began doing full physical prompts at 28 weeks gestation to teach him to sign for drops of breast milk into the corner of his mouth. (At one point one of my favorite neonatologists threatened to kick me out of the NICU if he ever saw me working on baby signs again until after Dax was supposed to be born, so I just did it on days he wasn’t there ;) Dax became my favorite client, and I’d pencil him in my planner every day for a long visit where I’d work on establishing myself as a reinforcer, try to determine novel reinforcers, and teach him how to live and thrive within his environment. The nurses would laugh at how much he responded to his classical music CDs, and they could always tell when they weren’t at his bedside if his CD was over because he would desat until they pushed play once more. Boy did he train them fast ;)

Eight long months in the NICU later, Dax had his first MRI, and it was bad. Very bad. Chunks missing bad. Streaks of dead area bad. “He’ll never be able to sit up or walk” bad. But we all know now, five years later, after intensive multi-disciplinary expertise and consistency and repetition and consistency and repetition and consistency and repetition and consistency and repetition that the kid can do anything. Try to stop him.

When little brother was born eight months after Dax came home from the NICU, we assumed he would be our typical little boy who would provide Dax with a “normal” environment while Dax taught him about compassion and diligence. Looking back, the signs were there from birth. Tyler would never breast feed, not even with the help of half a dozen nipple Nazis, errr, lactation consultants. He screamed constantly, he would never eat enough to fill his tummy, and he was never that happy baby you read about in books and see on TV. At six weeks old I was finally able to figure out he wanted cold breast milk straight from the fridge mixed with formula mixed with a tablespoon of baby cereal in a Dr. Brown’s phase 2 bottle. Still, even after he finally would get his tummy filled, he always looked so serious. My parents jokingly said he always looked like Richard Nixon with that classic scowl. We didn’t get the baby giggles and the smiles and the cooing… Looking back, I should have seen the signs, but I only knew that he was my “normal” child. I had no idea he’d later go on to be diagnosed with classic autism.

Dax, 5
Ty, 4

I say all this because, thankfully, I am a behavior analyst through and through. I can hypothesize without a controlled study that, based on Ty’s behavior patterns and history, he would “appear” much more autistic had I known any way to parent other than through behavioral principles. I can hypothesize without a controlled study that, based on Dax’s behavior patterns and history, he would have fewer skills today had I known any way to parent other than through behavioral principles. My last few years have been filled with those "AHA!" moments.

But still, at every conference for behavior analysts I attend, we have seminars on gaining acceptance. On why we’re not appreciated as a discipline; on why everyone doesn’t see what we see and understand what we understand... And suddenly I have much more to say about it.

I now stand with my feet in two worlds. One foot is planted firmly in the world of special needs parenting, and my support network is comprised of mothers and fathers who work hard every day to provide their children with every opportunity to succeed. They fight schools and doctors and therapists and odds to give their children the chance to be happy, successful, involved, and accepted, no matter what label, diagnosis, or prognosis their child has been given. They live this life 24 hours a day, seven days a week, holidays and weekends, at 3AM and 9PM. They sit vigil in hospitals and sleep covered in vomit and they don’t like you and they don’t trust you and they will fight you to the death for this child they adore.

My other foot is planted firmly in the world of applied behavior analysis, and my support network is comprised of BCBAs who work long hours trying to help children, adults, families, and staff have a better life. They know how to teach and they know how people learn and they know how to decrease bad behaviors and increase good behaviors. They write behavior support plans late into the night and field phone calls at 7:30AM and they want to fix the world through environmental manipulation and concrete data. I live in the world of special needs and ABA every second of every day. But as I stand here with my feet in both worlds, I feel compelled to answer the question that continually arises at every behavior analyst conference I attend. I feel compelled to inform the BCBA masses why I feel we’re not as widely accepted as occupational therapy and speech therapy and hippotherapy and psychiatry:

We’re smug assholes. From some of the top names in the field to the lowly first year students, we're just smug assholes.

I was one once. I understand. I would tell a mother there was no reason why XYZ shouldn’t be completed 100% of the time; why reliable 5-minute interval data was important every 30 minutes. I would tell a mother “There’s no research support for that” or “You’re just wasting your money” or “They’ve never published that in a reputable medical journal” and I would go on about my day, completely sure I understood everything there was to know about “fixing” kids with autism and kids in general. In my world, everything could be so simply understood by breaking it down into observable behaviors. That’s what we do. That’s what we’re good at. I was an excellent radical behaviorist.

But now I’m a mother. I am not just a mother to two boys with complex behavioral repertoires which always break down simply into an ABC analysis. I’m a mother to boys with internal, unobservable behaviors. I’m a mother to children with personalities and stomachs and brains and neurotransmitters and bruises and quirks and my eyes and stubbornness and their dad’s hair and athletic ability and penis-related hearing loss and sweet tooths. I’m a mother to children with complex EOs and MOs who would have been LOST were it not for strong speech therapists and brilliant occupational therapists and knowledgeable vision therapists and creative physical therapists in addition to solid ABA support. I’m a mother to a child who loses the ability to answer things he knows, walk steadily, or make good choices when he has a cold or is constipated due to neurological issues I can’t control. I’m a mother to a child who can find letters, numbers, and shapes hidden in his environment in his french fries or in the trees or in fences or in the drywall, but just learned to call me “Mama.” I’m a mother to children I cannot see only as behaviors that need to be increased and decreased, and I know things about them that there is no data out there to support, but that doesn’t make them less true.

But still, I stand in two worlds. My special needs friends can be pretty far out there for my BCBA mind some times. They try things I can’t wrap my head around. They quote articles I can find no scientific backing for, and I keep my opinion to myself unless directly asked, and even then my standard response is “I've seen no studies that show it works, but take data and let me know how it works for you.”

And still, there are things I try that are immediately met with criticism from my BCBA friends. “There’s no data for that.” “There’s no proof that works.” And yet, if I present my own data to them (“Look, the immediate effect of joint compressions as recommended by my son’s OT decreased his jumping behavior by 80% in the five minute data interval following the application of the compressions,”) they remain skeptical, despite the fact we are well-versed on single study designs. Why are we so opposed as a discipline to the idea that some of these “wacko, out there” interventions might actually work for some kids? Why aren’t we collaborating with other professionals to evaluate the efficacy of the treatments they are recommending rather than bashing them without doing our own single-study research to provide feedback?

Because we’re smug assholes.

We KNOW what we do works. What we forget, as a discipline, however, is that to everyone else, our clients are NOT just a collection of behaviors to be increased or decreased. Yes, our strategies work on primitive organisms all the way up to large masses of individuals in corporations and countries filled with voters. Yes, training your dog and teaching your kid how to hit a baseball utilize the same principles as a parent trying to train her eight-year-old son to say “blue” and use the toilet, but, as a special needs mother of two children with diagnoses, my children are no more simply a collection of behaviors to me than your dog or child is to you. The difference is, the odds are in your favor. Your dog will probably be a dog. Your kid will probably grow up without constant intervention and move out and become a somewhat successful adult without you teaching him constantly or fighting a broken system to get him what he needs. Odds are your dogs and kids are assholes too, sometimes, just like ours are, and sometimes you get exasperated. Odds are, sometimes a friend listens to you complaining about an issue you’re having with your dog or kid, and the friend can come up with a simple solution from the outside looking in that you couldn't see because sometimes it’s ridiculously hard to step out of your box and look at the big picture.

But still, at every conference for behavior analysts I attend, we have seminars on gaining acceptance. On why we’re not appreciated as a discipline; on why everyone doesn't see what we see and understand what we understand... And suddenly I have much more to say about it.

I find, with my feet in both worlds, I get much more “emotional” support and empathy from my special needs mother peers. I get anecdotal information I can digest in my own way and learn tips that only parents who live this 24-hours a day will learn. My BCBA friends offer excellent solutions. They are always available for concrete, evidence-based practices that have been proven to be effective for children with autism and head injury and noncompliance and poor tacting skills, but they cannot offer empathy, not in the same way a special needs mother can. They can try, and I have my goto BCBA friends whom I always nail down for advice and direction, but I find many BCBAs lack the ability to step for even one moment into a mother’s shoes because as a discipline we’re so caught up in science we often forget it’s people, not science, that matter in the end. It’s a child. It’s someone’s entire world. It’s a perfect, amazing creature with his mother’s eyes and stubbornness and his father’s hair and athletic ability. That’s where we lose people. That’s why we aren't as accepted. That’s why parents don’t follow through with all our programs. As much as we KNOW people are just rats in a lab, we cannot forget that people ARE NOT just rats in a lab.

There is a place for objective scientific reasoning, everyday. There is a place for graphs and data sheets, everyday. But, maybe we’re the ones we should be focused on changing. Maybe we should spend more time becoming conditioned reinforcers and less time completing the RAISD. Maybe we should spend more time listening to parents and other professionals than we spend refuting what they’re saying. Maybe we should spend more time analyzing treatments we’re unsure of than trying to publish data everyone already understands. Maybe we should spend some time understanding how internal behaviors work so we can do a better job coming up with replacement behaviors that actually work rather than just hoping for the best. Maybe we should become more likable than Jenny McCarthy. Maybe we should spend less time telling people that ABA works and spend more time using the principles of behavior in community relationships. Maybe we should acknowledge we can know how behavior works without always being able to utilize it effectively in our own lives. Maybe we should admit that we kick major butt at understanding the laws of behavior, but there’s a crap ton of stuff out there we don’t know.

Maybe we should just stop being smug assholes.

And, for heaven’s sake people, stop telling parents you know what it’s like to have a special needs kid because you have a dog. One day a mother will punch you in the throat for that, and I’ll probably buy her a drink afterwards.


Mollie Sheppard, MS, BCBA, and most importantly, MOM

Monday, July 22, 2013

Building boys

In 2004-2005, we built a house near Destin, FL. Not a big, fancy house, but it was ours. I look back sometimes, remembering how difficult it was. You know what the hardest decision for me to make was? Drawer pulls and cabinet handles. I agonized for weeks over which pulls and handles I wanted. I couldn't screw that up! That would make or break the whole house!

As I've gotten older and learned (tiny little bits) from my past mistakes, I realize I don't want to raise my children like I built my house. I don't want to spend all my time focused on the drawer pulls and handles, when there is so much more structurally important to building a good, solid child, than those tiny little details.

I'm reminded of that today at the boys' first swim lesson. A micropreemie and autism mom friend referred me to a local man who's been teaching swim for years, and he was willing to take on the challenge of teaching Dax, the boy who can't drink liquids, who has motor delays, who has a medical chart taller than he is, to save himself if he falls into water. Most people think I'm crazy... Putting Dax into a pool with a man who is known for no-nonsense tough love swim lessons? Putting Dax in harm's way by putting him in water with no floatation device, when he obviously can't even do some of the more basic functions of life? I should protect Dax. I should keep him safe from situations that could hurt him; from people who might not understand; from people who might not understand how delicate he is or how to treat him because he's special.

Today in the parent meeting, the swim instructor singled me out on a couple of occasions, stressing to other parents that Dax was a little different, and we'd have to be more careful with him. He went on later to tell a story about another child he'd recently taught who he had taken it easier on because of health concerns, and he didn't want to stress the child or his parents because they had been through so much.

But, I do want to stress my child. I do want to push him as far as he can go. I want to build a brick house. I want a house with hurricane-proof windows and steel reinforcements. I do not want to focus on the pulls and handles. I want his body to be a fortress, protecting the weak parts with a strong foundation and solid framing. That's what I want for him. That's what I want for both my babies.

So, this week we will undertake a new challenge. Ty will swim fine. He's been comfortable in the water for a while and can hold his own at least for a short time, although I foresee a temper tantrum or two in the near future. Dax, however... Dax has no life-saving abilities in the water at all. He panics, he swallows, he thrashes. This week the goal is to teach him to learn to turn himself over and float with his face out of the water. They will be extra careful with him, but he will require a great deal of sternness and discipline to get him to listen. I think we've found the right instructor to do it.

Now I just have to keep reminding myself I'm building a house. I can't prevent fires, or storms, or earthquakes, or floods, but I can build my house in a way to prevent damage from those things. I can't fix the world. I can't stop bad things from happening, and I can't always shelter my babies.

But I can show them how to live. I can teach them how to survive.

I will not focus on the pulls and handles. I don't care if they get picked first. I don't care if they have clean shoes. I don't care if they get strange looks. I don't care if they have cowlicks. I don't care if they walk funny or talk funny or stim in public. They will have good bones. They will have strong foundations. They will love and they will work and they will fight and they will persevere and they will laugh and they will really, really live.

My babies will be fine.

Sunday, May 12, 2013

An Ode to my Offspring

An Ode to my Offspring
By: Mollie Mills Sheppard

You've grayed my hair
You've wrecked my skin
Stitches outside
Stitches in
My boobs are rurnt
My hips are too
Those ugly veins
Are big and blue
I was once so nice
And did little bitching
But I now scream obscenities
As my left eye is twitching
I could sleep all night long
By myself if I chose
With no farts in my face
Or getting soaked while I doze
I was pretty and smart 
and energetic and witty
But you stole those from me 
when you fed from my titty
I guess that's just the way life goes 
as a mother
I'm glad it was you
And not any other

Thank God you are cute
Little babies of mine
And for all the good reasons
To drink tequila and wine


Your proud, if not somewhat haggard, mother

Monday, May 6, 2013

Tummy update: One year later!

It occurs to me I never explained what we finally figured out about my stomach issues and I wanted to pass on the info in case it might be able to help someone else.

I was hospitalized a year ago this month. The abdominal pain was excruciating, the joint pain was terrible, the nausea was never ending. The doctors found a long section of my small intestine was extremely inflamed and they stuck all manner of items into all manner of places trying to figure out why I was so sick. My stomach blew up to third trimester proportions. Dilaudid was my only friend... Everything else made me nauseous. It took weeks to get enough energy up to do short days at work, and I needed naps for months after. Steroids helped, and they helped a lot, but they also led to joint pain, edema, and weight gain, and my face starting bearing a striking resemblance to Zach Galifianakis. I slowly weaned down from 22 pills a day to none (on my own, without GI guidance) because, you know what? After I underwent an outpatient barium enema (OH MY GOD, never again) and swallowed a camera that took 56, 000 pictures of the inside of my digestive tract, the doctor told me I was fine.

Except I wasn't fine. I would drag myself upstairs sometimes to take a nap at 10AM and wake up unable to bend my knee. I would poop 5,008 times a day whether I wanted to or not. I would randomly become so ill I couldn't keep anything down and could hardly walk through my house without getting winded, and I knew I wasn't fine.

So it was Crohn's, obviously, right? That's what the signs all pointed to. The migratory arthritis, the fevers at night, and muscle aches, the abdominal cramping, the extreme lethargy, the general lack of enthusiasm or even tolerance of much of anything. Steroids helped, so obviously it was Crohn's, right? Except I didn't want it to be Crohn's, and I never really believed it was Crohn's... But what else could it be?

But then, as it often does, Facebook saved me. After my friends heard me bitch and moan for months about my symptoms, a couple of friends mentioned Celiac disease. I was skeptical at first, but I was willing to give it a shot to not feel like total crap every day. And then something magical happened... I felt better. Not perfect, but better. So I started looking closely at the other foods I was eating that might be triggers and one day it all clicked. Gluten is a trigger, and I have an obvious gluten intolerance, but it's more of a nuisance. My biggest culprit of my stomach woes is none other than sucralose. Splenda. The yellow packets. Oh, wow.

I used Splenda in everything. EVERYTHING. And the things I didn't use it in, I discovered over time the manufacturers used it in there anyway. All my favorite things... Sweet tea, Sonic's peach tea flavor, my Lifesavers orange mints I loved, my gum, my cough syrup, my sleeping pill I took at night to hep me sleep better when my tummy was hurting... Once I eliminated all the sources of sucralose in my life I have become 100% fine!!! My energy is back, the fevers are gone, my stomach isn't bloated anymore, my joints don't hurt, the two finger joints I haven't been able to bend for a year will now bend again, the acne that started about a year ago has gone... I feel like a person again. Like a 32-year-old person, not a 75-year-old person. It's been amazing.

I still can't do gluten, although I sneak some in every now and then. I don't pay for it like I pay for accidental Splenda use; that's much more unpleasant.

So, this has been a public service announcement. The longer I understand how these chemicals affect my body, the more I wonder how many of my friends with fibro or joint pain may be suffering from some of the same issues but just don't know it yet. It's worth a shot to give it up for a couple of weeks and see how you feel. Pain meds didn't fix it at all for me, but diet change did.

And thus ends today's episodes of Mollie's Being Dragged Kicking and Screaming into Healthy Eating. You may now resume eating your delicious foods I can't eat anymore. Enjoy them while you can!!

Sunday, April 7, 2013

Just keep swimming, swimming, swimming

I was talking to a friend earlier today, and that old adage came up again... "Well, you know, God won't give you what you can't handle. He knew what He was doing when He picked you."

It's been addressed before, and it will be addressed again, but I'm going to break it down for you in simple Mollie fashion:

Bitch, please. What a load of crap.

In the beginning it's good for us to hear. I'll admit, I drew strength from people telling me God picked me. Obviously God knows what He's doing, right? God never makes mistakes. But here's the rub... Once you've been told so many times that God picked you, and God did XYZ to you for a reason, you begin to get really pissed off at God for being such a douchebag.

Yeah, I went there. Because, you know what? That's what you imply when my baby is lying there suffering, that God is doing that to him because I can handle it.

Prior to March 23, 2008, I'd have agreed with you. Prior to watching my babies suffer and hearing "Oh this is God's plan" 9000 times from well-meaning souls who didn't know what else to say, I'd have said the same thing. I didn't question, not before that day five years ago. Oh, and don't think I wasn't told to "Be strong and don't question God." I was weak. I questioned. I swore at Him. I questioned Him some more. And do you know what happened? I began to think about God in a new way. I began to understand Him in a different light. I think I got a whole lot closer to the Truth.

Every time you say "God picked you because you were strong" you minimize what we, and everyone else goes through everyday. Five years ago I was you. When you get thrown into a lake you sink or swim. We swam, not because we were strong, but because we didn't want to sink... and some days we still get tired of swimming. My kids are lucky to have us as parents, but you know what? There are children dying everyday because they were not so lucky. And God didn't pick them for that, either.

Five years into this, I tell you I don't think God picked us. Yes, I have a voice, and I use it. I've used my voice to speak out for my children and for others who need voices. I have used my voice to endear my children to people across the country, and give faces to children whom people might have otherwise pitied, or even worse, seen as valueless. God gave me this voice. God has given me every tool I've needed to walk through the storms, but He didn't pick me. I like to think of Him more as my team sponsor. He didn't get us into this mess, but He's got the capital to keep us up and running.

So the next time you, or someone you love, are facing a hardship, please remember this. You are as strong as you decide to be. If you want to swim, by God, swim... And I promise not to tell you God picked you for it, but I can tell you where He keeps the life vests.

Sunday, March 10, 2013

One of my favorite stories ever

I was recently telling someone one of my favorite stories and I realized I’d never shared it with the world… And I think the world needs to hear it.
When Dax was about a month and a half old, living very precariously still in the NICU, he began slowly easing his way into kidney failure. His urine output slowly decreased until one Monday his primary nurse sat me down and told me the doctor had officially diagnosed him with complete renal failure. I looked her in the eyes and asked her if I should be worried. With tears in her own eyes, she shook her head yes.
We talked a while about what it meant. Realistically speaking, there was nothing they could do.
The doctor came through a few minutes later and she explained to me there were no dialysis machines for babies that small. They had stopped all meds that might have renal side effects, but still, he was having absolutely no urine output. His swelling was worsening every day.  All we could do was pray. If Dax’s kidneys didn’t begin working soon, we were looking at him dying within a few days.
We were obviously devastated.
So we prayed for pee. A whole lot of people prayed for pee.
That Thursday I was sitting vigil at his bedside when my mom walked in and surprised me. She lives about six hours away and I hadn’t known she was coming. She sat down with me and said, “I have a confession to make.”
She went on to tell me she’d held it all together all this time. For over two months she’d dealt with us losing Aubrie, me being hospitalized, my father being in ICU, a very sick Daxton, and now Dax’s apparently impending death. She’d held it all together beautifully up until she was driving north on Highway 45 and got stuck in road construction. That, it appeared, was the last straw.
“I turned off the radio, I rolled up the windows, and I let God have it.”
She said she’d fussed and cussed and told Him under no specific terms He was NOT taking her grandbaby; that we’d been through enough and He needed to cool His jets and go pick on someone else for a while. She smiled after she told me. I could tell she’d made some peace that day.
We left the hospital at shift change and went home to eat supper. I called the hospital at nine, like I always did, to check his weight for the day and see how the shift was starting. Nurse Debbie answered the phone that night, and in her typical nonchalant fashion she said, “I came in and they were all fussing about renal failure this and renal failure that. I don’t know what all the fuss is about; that kid’s peed 150ccs since I got here.”
 I whooped and I hollered and I jumped and I yelled to my mother, “Oh my God! He’s peeing! His kidneys are working!”
My mom just smiled.
“It’s proof God’s a man. You have to bitch at Him before He listens.”

Wednesday, February 27, 2013

Most likely to succeed

I was looking through an old high school yearbook a few months ago and I had a little laugh at myself. My senior year I, on purpose, was in almost every club… I can remember staying after school for softball, then after that as editor on the yearbook, then after that for aerobics. I took Latin because I wanted to, sang in the choir even though I couldn’t sing, was in FFA because cowboys were cute but I had no desire to farm. I had a constant desire to do more, to be better, to be the busiest… To be the best.
To win.
Winning. That was what it was all about. I needed straight As… The highest ACT score… I needed to be admired. I needed lots of letters behind my name. I wanted awards. My desire to achieve did not go unnoticed. I was voted “Best All Around” and “Miss WHS” and homecoming court by my peers. I was voted to the Hall of Fame and “Most Likely to Succeed” by my teachers.
And that mattered to me. It mattered a lot.
Looking back, it’s the “Most Likely to Succeed” label that makes me smile the most. My teachers saw something in me that made them feel I would be successful. At that point in my life I thought that meant money, respect, a big diamond ring, the fancy car, the big, fancy office, the PhD, the MD, the 2.5 kids with the fancy house. I don’t know if that’s how the teachers defined “success” or not. All I can say definitively is 17-year-old high school senior Mollie would have not classified the life I’m currently living as a “success.” This was so not in my fifteen-year plan.
That’s sad because, you know what? The things I would have looked down on at that time are the things I now feel are my biggest accomplishments. If there had been a way to tell me back then I would have a dead child, a medically complicated/developmentally delayed child, and a child with autism, I would have had a hysterectomy on the spot. I wouldn’t want those smudges on my resume. Kids who are less than perfect, straight-A, scholar-athletes? I hardly think so. Not on my watch. Not from my uterus. No way, no how.
How I laugh now, knowing my babies are how I have redefined my success.
I’m thinking about all this today based on some recent comments I saw posted on an article about a mother who has been requested to remove her child from school property each day at lunch time to tube feed her. Not only will the school no longer do it, they do not want the mother to do it on the premises. The blatant disregard for FAPE and IDEA from the school aside, the comments left on the article from people who don’t feel children with tubes, trachs, or any disability, really, should be educated in public schools… They hold back the other children… They use up funds and time that would be better spent on educating their own children… Students who are “normal.” They’re just drains on society, is all. Obviously, anyone with a feeding tube is a waste of educational funding.
Maybe 17-year-old, super successful Mollie would have felt the same way. Survival of the fittest, right? I mean, if you don’t have the potential to change the world and make millions, what good are you after all? Why would I have wanted to, or even needed to, waste one minute of my time? Oh, maybe for a public service project. That would look good on my resume. HR loves volunteer work on your resume. That would help land that dream job.
Seventeen-year-old Mollie grew up some in college. I learned to direct my life to an area which made me happy. I took a job working as a tech in an acute psychiatric hospital (because it would look good on my resume, of course.) But, you know what? I learned that I liked working with people who were a little different. I found I could learn a whole lot more from a Vietnam vet with PTSD than a pre-med frat boy who grew up on daddy’s money. I learned someone in the midst of a severe paranoid delusional schizophrenic break would be nice to me if I treated him nicely and with respect. I learned everyone had potential to bring goodness into the world. Not everyone chooses to, but everyone has the potential.
That’s true for everyone, regardless of race, sexual preference, gender, religion, height, weight, hair style, number of tattoos, diagnosis, socio-economic status, and even IQ. It’s a choice we all make, every day.
Fast forward through all the lessons I’ve learned over the past five years, the ones I’ve had to really, really internalize. The crow I’ve had to eat. The asses I’ve had to kick and the ones I’ve had to kiss. The toes I’ve had to step on. The three children I’ve birthed who I would lay down my life for this very instant if I needed to.
Perfect? Yes. Maybe not to everyone. Maybe not to 17-year-old Mollie. Maybe not to the average 35-year-old  soccer mom. Maybe not to the 55-year-old congressman. Definitely not to the CEO of my insurance company ;) Maybe not even to you. But here’s what I do know: everyone has potential to bring good into this world… Even my baby with a feeding tube and my baby with autism; even my baby who lived just one day. We don’t all shine the same lights; we don’t all shine them in the same direction or at the same brightness or in the same color… But just because your gift is being a cunning salesperson or a charismatic leader or a professional athlete or a well-known minister… Don’t for one second think your light is more important than anyone else’s.
You may do well in life, but do you do good?
I no longer long for a straight-A child with a baseball scholarship to a strong SEC school. I want a kid who works his ass off for a C in math. I want a kid who respects others and loves life. I want a kid who doesn’t feel life owes him not one thing, but would give the shirt off his back to a stranger. I want a kid who smiles, and means it. I want a kid who opens doors for others and knows “no” means “no” and says “please” and “thank you” and “I’m sorry.” I want a kid who loves people regardless of their differences, and treats them accordingly. I don’t know what the future holds for my babies; the world remains their oyster. But this I know, one of my kids may be bagging your groceries at Kroger one day, and he’d better be the nicest damn grocery bagger you’ve ever had. Or you know what? One of my kids may be your neurologist one day, and he'd better have the best damn bedside manner and the best listening capabilities you’ve ever come across in a physician. I don’t care which; I don’t care if they do well, but they better do good. That’s all I hope for.
That’s all I hope for any of us anymore.
So, yes, I have succeeded. I have succeeded in learning the secret to success is not making money. It’s not being in charge. What makes me successful is not the letters behind my name (and I have a few ;) or the amount in my bank account (it’s not very much.) My biggest successes are my children, and the goodness I have helped bring into the world through them. They have made this world a better place.
I don’t expect everyone to see that. I don’t expect everyone to understand that. All I can hope is for others to tolerate it; maybe even embrace it. Allow my children, my imperfect, amazing children, to live in the same world as their imperfect, amazing children. To accept their differences and their weaknesses do not diminish their strengths, their will to live, their hearts full of compassion. To treat them with respect and love even if my children can do them no benefit. I will teach my children to do the same.
Isn’t that really the secret to success after all? I’m pretty sure it is. That’s winning at life, and I want the gold star.

Sunday, January 13, 2013

Dax vid, long overdue

A boy update before they're in college

I do believe I’ve become a quarterly blogger. Remember when I used to blog once a week? Yeah, me either. It was a long ago time when I had one kid that didn’t move much and one still just giving me indigestion. Now they both move so much… And still give me indigestion.
 I used to read other people’s blogs, also. I find there’s no time for that anymore, either. So if you’ve noticed I never comment on your blog posts anymore it’s not because I’m not interested or I don’t care… I’m just out of touch with anything that doesn’t directly involve my kids, job, Sesame Street, Leap Frog, or sleep. So, for my blogosphere friends, and my real life friends, I apologize!
 So, guess what?! Ladies and gentlemen, we have progress. On all fronts. It’s a beautiful thing.
Let’s start with me because, well, frankly, I don’t really matter so we’ll get me out of the way early and move on to the important stuff. I got pretty sick again in December and probably should have gone back to the hospital, but… well… ain’t nobody got time for that. Per some suggestions from some medical friends I looked into celiac disease and went gluten-free just to see and, poof, I am better! I’m not 100% sure it’s celiac disease, possibly just a gluten intolerance of sorts, and possibly all a product of sensitivities from using Splenda (which I absolutely cannot use anymore, so I’ve discovered.) I’ve done some treatment reversals (because I’m a behavior analyst and I like good data) and there is definitely a relationship between gluten and my tummy woes so, for now, I’ll try to keep the gluten out… Which is extremely hard as some of you know… Gluten is a sneaky little whore who hides away in the most unsuspecting of foods. She’s the James Bond of proteins, I swear.
 But enough about me.
On to my TyTy. At last report we had just gotten an autism diagnosis for Tyler and the enormity of that was still sinking in a bit. I’m pretty much over it now and I’m absolutely certain he is a genius and the mayor of TylerTown. I got him in to see Dax’s neuro and was prepared to have a talk about possibly trying a stimulant for Tyler’s hyperactivity. If you’ve met me, you know I pretty much know what I want going in and tell the doctor what it is that I want, how I want it, and when it will start, and I was totally okay (after much internal battling) to try a low dose of Vyvanse. While the doc was evaluating him and I had not yet told him my feelings, the doctor says “Take a minute while I am interacting with him to think about how you feel about medications.” Oh, yeah, please, like I was coming in open-minded. Please. I already have my answer formulated in my head. I know everything, doc, geez. Don’t you know that yet?
 So, he finishes playing with Tyler and says, “Sometimes these kids have a really hard time accessing the world because they can’t get out of their own little worlds. Sometimes medication can help them get into our worlds.” Well, duh, that’s exactly what I was thinking.
“I think we should try him on a low dose of a medication,” he says. Well, duh. I knew you would say that. 
“I totally agree with you. I’m willing to try a lose dose of Vyvanse for his hyperactivity,” I say.
 “Not a stimulant. An SSRI. Zoloft.”
 And at that point the whole conversation I had worked out in my imagination exploded and a piano fell on my head. We talked a bit, I agreed to try a few other things first, and I left with a scrip for a low dose of Zoloft for Ty’s “OCD tendencies.” I had absolutely no intention of having it filled.
 Fast forward a couple of months, and, after much deliberation I decided to give it a shot. Worst case scenario I could just take him off it, right? But he is doing AMAZING. After about two weeks he seemed to be noticing things he hadn’t noticed before. After about four weeks he began identifying random items and using language to request items more frequently. I just followed up with the neuro this week, and the best way I can describe it is like before he lived in TylerLand all the time, with occasional trips to our world. Now he lives on the outskirts of our world with occasional trips to TylerLand. His personality is the same, but he’s happier, his affect is brighter, and he’s present with us so much more. He’s working on potty training and following instructions and imitating language and picking up on routines he hadn’t noticed before.
That makes for a pretty awesome Christmas present.
As for Daximus Maximus, he is (knocking on wood as I type) really stable right now. 2012 was such a good year for him health-wise! He still thinks it’s fun to scare me at night from time to time, but it’s more like “someone grabbed me from behind and said ‘BOO!’” scary rather than the “someone is chasing me through the house with a chainsaw” scary at which Dax has been historically so damn good.
 Oh, and quick story. Dax had a vocal cord plumping procedure completed on Thursday. I pretty much figured we were screwed when I drove into the parking garage with my NPO toddler and got a good parking space. I knew at that moment that they were probably going to amputate the wrong leg, if you get my drift. I couldn’t have been more wrong. We had the best OR experience we’ve ever had, complete with meeting great people in the waiting room, great pre-and post-op nursing care, and anesthesiologist who was formerly a pediatrician who was amazed and awed at how wonderfully my little 23-weeker is doing. She changed up the normal anesthesia routine and Dax made it through without being intubated, without emergence delirium, and with only a tiny bit of oxygen need before going home. It was great.
 Equally exciting, for the first time Dax was able to process he could not eat or drink until after the procedure. Not an easy task for any kid with an afternoon surgery, but at 2:30, after being completely NPO since 8AM, Dax was saying, “Surgery first, then milk,” and I’d confirm, then he’d say “I want surgery, please.” What a trooper.
At any rate, his language has taken off, his balance and coordination are improving, his appetite is down-right disgusting at times, and he’s absorbing everything. Weight-gain sucks, but he’s getting taller, expressive language still sucks, but it’s better, and potty training will probably NEVER EVER HAPPEN. Ever.
 And that’s the end of my update. I’m sure there’s more, but my brain is shut off for the night. I’ll try to post some pics soon. These boys are growing like fungus. On weeds. On crack.