Tuesday, September 27, 2011

March Forward


I think that having a child on the spectrum, or any child with special needs, is a roller coaster of emotional highs and lows.  You rejoice in the little victories more than typical parents.  You also experience reminders that ground you as to where your child has been, where they are, and how far they have to go.

Jack has been receiving aquatic physical therapy through Babies Can’t Wait.  My personal feelings about Babies Can’t Wait aside, the aquatic therapy has been a positive and I think the world of our therapist.  As is usually the case, the therapists are awesome, but the system sucks.

A couple of weeks ago, our PT brought it to my attention that Babies Can’t Wait had neglected to do a PT evaluation on Jack.  She said that they usually don’t unless parents express a concern.  Well, I was so focused early on with Jack’s social and communicative delays that I didn’t really consider his gross motor deficiencies.  Sure, he didn’t move like the other kids, but it wasn’t high on my priority list.  Jack took a long time to meet each motor milestone, but he was walking.  It took a back seat to what I thought were bigger problems.

Even though Jack’s PT does aquatic therapy, PT evaluations have to be land-based.  So, she performed one on Jack.  As I’m watching him go through the battery of tests, I could see how difficult it was for him.  Due to his expressive/receptive language delays, the PT was modeling actions, doing hand-over-hand demonstrations, giving multiple visual and verbal cues, and giving Jack multiple trials and test-runs to perform each task. 

He couldn’t do most of it.  He didn’t even try.

I felt the need to plead his case to the PT.  He just doesn’t understand what’s being asked of him.  He doesn’t understand what you’re saying to him.  Let me try.  Let me demonstrate for him.  Maybe then he’ll do it.

Nope.

In the hustle and bustle of the next week, the awareness of Jack’s performance on his PT evaluation was in the back of my mind, weighing me down, but I was busy and able to put it out of my mind at times.

Until last Thursday.

I had asked his PT to give me a call and discuss the results over the phone before our session that week.  Since Jack’s therapy is in a pool and he has no awareness of danger (he’ll run toward the pool with no understanding of my warnings for him to stop), it is difficult for me to focus on what his PT is saying and to keep Jack corralled and safe.  She called Thursday morning.
Her first words to me were “Now, don’t freak out.”

Good start to this conversation.

“Jack certainly qualifies for services.  In stationary motor skills, he tests at a level of an 11 month old.  In locomotion, which is walking, jumping, etc., he tests at a level of a 16 month old.  In object manipulation, he is testing at a level of a 13 month old.  In overall gross motor skills, he is equivalent to a 13 month old and in less than the 1st percentile.”

I felt a knot in my throat at those words.  I was just told that my little boy, who I didn’t think was that delayed physically, had the motor skills of a child less than half his age.  Essentially, he learned to walk, then his motor development stopped.

How did I not see it?

I’ve asked myself this question multiple times.  When Jack had his first evaluations with Babies Can't Wait, which were performed about a month prior to his diagnosis with PDD-NOS, he tested as significantly delayed in every area they tested, which was everything minus gross motor development.  At the time, I thought his only delays would be in social skills and communication.  Of course, had I realized that they test self-help skills, I would have known that there would be a delay there, too.  But to hear that he had a cognitive delay...that was hard for me to take.  To hear how delayed he was once I got age-equivalencies, was even harder.

I didn't let it collapse me this time.  I had a good cry and was bummed out for about a day.  After that, I moved forward with a new resolve.  This is just another problem to tackle, but we've already started working on it.  It's good that it was identified now while he's young, so he can take advantage of therapy through Babies Can't Wait and special needs pre-K while he is still in this critical early intervention window.

I think that's key to survival with a special needs kid.  For every happy milestone, there will be setbacks.  Therapy reports and evaluations will always highlight something negative about your child.  You'll always personally highlight the positives.  For each challenge, you have to not let it consume you.  You have to tighten your boots and march forward with a new resolve to work the problem and find a solution.

I'm lacing up my boots and we're going to tackle these physical delays head on.  We're going to fight for therapies, school interventions, and everything else Jack needs for success.  This is a fight I'm determined to win.

Monday, September 26, 2011

It May Not Be "Mommy Music"...

Saturday was the 20th anniversary of Nevermind.
Can you believe that?!?  I'm not that old!
...but it's good music.

Being a teenager of the 90s, which probably is awfully disturbing to my younger siblings, I had several choices as to my "attitude".  I could be popular, which wasn't going to happen.  I could be popular, yet smart, but somehow I was precluded from popularity amongst the academics.  I wasn't really that sporty, though I played and enjoyed sports.  I wasn't artsy, as evidenced by my utter lack of any creative abilities, minus writing.  I wasn't "emo", which in my day was called "goth", to those of you in the younger generation.

So what was I?  Maybe I was angsty.  Maybe not.  I was a nerd.  I had no sense of fashion, except for wearing what was comfortable, which was often t-shirts and jeans, paired with a sweater when it was cold.  I wore Birkenstocks or running shoes.  I couldn't stand to wear skirts or dresses.  They actually were uncomfortable for me to wear.  They still are.  Ironically enough, this is still how I dress today...15 years later.

I guess maybe you could define me by the music I listened to in high school.  As former coworkers can attest to, I have an eclectic taste in music.  While Dave Matthews Band was one of the more popular things to listen to in high school, I didn't really get it.  Instead, I listened to classical if I needed to really think.  I listened to Bob Marley if I needed to mellow out (not "mellow out" in the way some people do to Marley, though).  For such a quiet little girl who was a nerd and did Varsity debate in high school, I listened to Pearl Jam.  Nirvana.  Alice in Chains.  Metallica.  Pink Floyd.  AC/DC.

I really haven't changed much in the past 15 years, besides the fact that some have said that I've gotten more serious (can you blame me?).  However, my I-Pod is still filled with those old familiar favorites and I listen to the often, when I'm not being subjected to Thomas the Tank Engine or Baby Einstein CDs.  Maybe one day, when I'm not trying to bombard Jack with music to soothe the sensory-overwhelmed-toddler soul, I'll introduce him to Pearl Jam.

While I cared about the fact that I was a little lacking in the close friend department in high school, it never really occurred to me to change the way I was in order to fit in.  Maybe, I'm a bit like Jack in that way, except that Jack doesn't want to socialize.  I did.  Much in the way that I didn't care back then if what I wore and what I listened to "fit in" with the teenager mold, I guess I don't really care now, either.

I still listen to that music, despite the fact that maybe as a Mom I might should pick a new soundtrack.  I might should dress a little less like a slob (I know my Mom would appreciate it), and a bit more like I cared about my appearance.  However, I kind of like who I am, and with everything else I've got going on, I at least need to be comfortable with who I am.

I feel comfortable in my skin.  I have friends who appreciate me for who I am, quirks and all.  I have a husband who, at least to my knowledge, appreciates me as well.  If he doesn't, he's an awesome actor, and I thank him for pretending like I'm awesome.

I wouldn't go back to the teenage years, except to maybe meet Brian all over again, because we had a good time back before the days of bills, therapy, and autism.  However, I like being my own kind of adult, and I'm glad I didn't change who I was back then.  I kinda like being me.

Friday, September 23, 2011

I'm Hovering

This blog shouldn't be called "Reinventing Mommy".  It should be called "Helicopter Mommy", or at least that's what I fear.

Jack's special instructor has told me that I "hover" at the playground.  I get that, but when your kid falls climbing stairs, it's hard not to hover.  However, I'm starting to wonder if I "hover" in other ways, too.

I was watching Parenthood the other night, which, for those of you who don't know, is about an extended family in Northern California and their trials with raising children and their relationships with each other.  One of the children on the show (not the actor, his character) has Asperger's, which is on the high-functioning end of the autism spectrum.

I know, it seems like a stereotype that I get into watching a show with an autistic child since I have one myself, but I can relate to those challenges, so I relate to the show.

Anyways, in Tuesday's episode, Max (the kiddo with Asperger's) is being mainstreamed into a typical school out of the autism program he was in.  His mom, understandably, is nervous about the transition.  She takes time off work to spy on him on the playground, only to see that he's sitting all alone.  She emails the teacher multiple times to ask various questions, only to get no response.  Finally, she just shows up at Max's school to talk to the teacher.  They have a meeting of the minds, in which the teacher agrees to respond more, but makes the mom aware that she's not going to be able to have control over what happens to Max at school.

No control.  That reverberated in my head over and over again.  The mom was not sure that control was something she could give up.

I immediately related.  I think that when you have a special needs kid, so much of your life revolves around controlling situations, simply because it must.  You try to control sensory stimuli so as not to overwhelm your child.  You want to be in control in the IEP process, because you want what's best for your child.  You feel the need to be within arms reach, to pick them up when they fall, because they fall more often than most kids.

I worried that I hover too much.  I worry that I annoy doctors/therapists/other people involved in Jack's life with my constant barrage of questions.  I send multiple emails.  I blog about it.  I put advocacy links on my Facebook page.  I worry that I'm not doing enough for him.  I want to understand every aspect of where he is developmentally so that I can figure out what to do, how to help him more, as if I even have the knowledge or the power to do that.

In short, I have become the crazy, controlling person I never thought I would be.

But is it a good thing or a bad thing?

In that process, I worry that I probably come off as crazy and annoying to providers.  After 2 years of being passive with Jack's pediatrician when I knew that something was wrong but allowing her to convince me otherwise, I feel like I have to advocate for Jack more.  It's hard to find a happy medium.

I'm not sure what the line is between advocacy and crazy.  I hope I don't cross into the "crazy" range too often.

Thursday, September 22, 2011

Little Blessings


My baby boy at 6 months old.  I miss that
gummy grin.

Some days, you just have to count your blessings.  It grounds you and reminds you that even though life gets tough, there are blessings in the ordinary things.  
  • I am thankful that Jack is beginning to speak.  When he regressed in his speech, I was so afraid that those words he lost would be the last I’d ever hear from him.  I no longer fear that he won’t talk – he will.  It’s just going to take time and hard work.  I have time, and I will work.  It may take a while, but I have a lifetime to devote to him.  I am fortunate that my baby will be able to speak, because there are others on the spectrum that cannot.
  • I am thankful that I have family who supports us.  Family who supports Jack.  When I hear that other persons have family members who do not believe that their child has autism, my heart breaks for them.  Combating autism and helping our children develop is a community effort, and I am fortunate for the community that supports me.
  • I am thankful for the people who encourage me and support me through this blog, through my Facebook page, and on Twitter.  Your words of encouragement and support get me through the rough days when I question whether or not I can do this anymore.
  • I am thankful for the friends who still call, who still want to have play dates, and who are totally non-judgmental about this process.  I stay so drained these days that it doesn’t always occur to me to call, but I promise that the little bit of normalcy you insert into my life is much appreciated. When we shared the news of Jack's autism diagnosis, some friends disappeared.  The ones who remained are precious, and I thank you.
  • I am thankful that Jack is growing up in a time where children on the spectrum aren’t institutionalized or labeled in ways that are not indicative of their true challenges.  I’m thankful that therapies exist today to help my little guy grow and develop to be the best Jack he can be.  I’m thankful for the hope that my son will have a chance at a future that has some degree of independence and self-determination.
  • I’m thankful that we found the perfect developmental pediatrician for us.  Quite by accident, we went to Dr. DP because the big autism institute in the area could not fit us into their schedule for a while.  We were desperate to get Jack some help, and Dr. DP fit us in, evaluated and diagnosed him, and developed a treatment plan that was perfect for Jack and our family.  The staff at his office listens to my concerns and gives us personalized care.  They know our family.  They’ve been to our house.  They are there to listen and help.  They care tremendously about children with developmental disabilities.
  • I am so thankful for the wonderful team of therapists who invest their time and energy in Jack every week.  They put up with my endless questions and worry over Jack’s development.  They give me confidence and encouragement.  Most importantly, they are giving me the gift of a better life for my baby.  I don’t know what I would do without them.  We really have the perfect therapy team.
  • I am thankful that Brian and I have each other during what has been the last thing either of us imagined our futures would hold.  I don't know if I could do this alone.
  • I am thankful for the everyday joy that is Jack.  Parenting a child on the spectrum is very, very difficult, to say the least, but the rare moments of peace when I catch a smile are just pure heaven.  I still never tire of the softness of his downy hair.  He is, by far, the most precious person in my life (next to Brian, of course) and he reminds me everyday to take delight in the little things, because they are big accomplishments to him.  He is my love and my inspiration.

Hopefully, each of you can take the time to sit back and reflect on the blessings in your life.  The little blessings make the bigger problems seem less daunting.

Wednesday, September 21, 2011

Weight Loss Wednesday: Egg Mugs


This week's stats are:

Starting weight: 180 lbs. / Goal weight:  135 lbs. / Current weight:  169.8 lbs.

I've lost 10 lbs. so far!

Oh, egg mugs, where have you been all my life?

What is an "egg mug", you say?  Well, if you've ever read or watched Hungry Girl, you may have heard of them before.  Basically, it's an omelette, breakfast casserole, all kinds of awesome cooked in the microwave in a mug.

Yes, in the microwave.  And they're awesome!  The one I'm consuming right now is 3 PointsPlus.  That's ridiculous!  It's full of cheesy goodness, with a bit of bread thrown in to make it casserole-like.  Here's the recipe that I used after modifying one of Hungry Girl's recipes:

Reinventing Egg Mug

1/2 cup of refrigerated egg substitute, like Egg Beaters
1 wedge of Laughing Cow Light Swiss cheese, cut into small pieces
1/2 slice of light bread (I like white best for this), toasted and cut into cubes
1 tbsp. of 2% shredded cheddar cheese
Non-stick cooking spray

Spray the largest microwaveable mug you can find with non-stick spray.  Place the Egg Beaters, the cheese wedge, and the bread cubes in the mug and stir (I also season with a bit of salt, but if you're watching your sodium, leave it out).  Cook in the microwave for 1 minute on high.  Gently stir the egg mixture, then sprinkle the shredded cheese on top.  Cook for 45 more seconds.  Once finished, wait a couple of minutes so that the eggs aren't too hot (if you can wait that long!) and enjoy!  When made as described above, the entire recipe is 3 PointsPlus.

This base recipe could be expanded upon in many ways.  Add a little bit of meat, or load up on some veggies, to give the mug a twist.  Add a whole grain mini-pancake and sugar-free syrup on top for a cup of breakfast-y goodness like what Krystal makes in their Scramblers.

Without my microwave, I don't know how I'd survive.  What kinds of awesome do you cook up in the microwave?


Tuesday, September 20, 2011

Grandparents and Autism

For the record, not Jack's actual
Grandparents.
September is National Grandparents Month.  In honor of Jack's grandparents (and great-grandparents!), I'd just like to say how wonderful they are to him.

Autism doesn't just affect Moms, Dads, and the kiddos themselves.  On the contrary, autism isn't something that you live with in isolation, even though it may feel that way at times.  Autism affects the entire family.  It changes everything.

Jack was the first grandchild on both sides of our family.  He was the first great-grandchild on both sides, too.  That's a lot of pressure on a little guy.  Being a boy, I think he was the much-anticipated first-born male in the next generation of our family.  He'd pave the way for the siblings and cousins to follow.

I don't know from experience, but hearing that your grandchild has autism has to be crushing.  I'm sure that grandparents, not unlike me as a Mom, think about what they're going to do with their grandson one day.  Hearing that Jack was autistic, suddenly the dreams of teaching him to play baseball, taking him to a Braves' game, and just doing the normal grandparent-grandson activities had to be called into question.  Like I said, it changes everything.

Jack has been blessed with wonderful grandparents.  I hear of other parents of ASD kids who say that their parents don't believe their child's diagnosis and believe that it's something that a bit of increased discipline will cure.  Others, upon hearing that their grandchild has special needs, just disappear.  We are fortunate that Jack's grandparents do not fall into either of these categories.

On the other hand, Jack's grandparents go above and beyond for us all.  They understand that Jack has sensory needs that make certain situations difficult.  They do their best to accommodate Jack's needs.  They understand that it's difficult to take Jack to public places, so they watch him so that Brian and I can do what we need to do.  They accompany us to various doctor's appointments so that we can speak to the doctor instead of putting our focus into wrangling Jack.  They endure hours of Thomas the Tank Engine and buy countless wooden trains because that's what he likes.

They also understand that being the parent of a special needs kid is really tough, and they allow us to vent and even cry when it gets to be too much to keep inside.

They advocate for Jack just as passionately as I do.  They educate others about children with autism.

In short, they're awesome.

Autism takes its toll on a family, but to have grandparents who are willing to not only absorb some of the blows but fight back along side you is nothing short of amazing.

To my grandparents, who have been there for me through this journey, supported me and Jack, and cheered on every milestone Jack manages to hit, I must thank you as well.  Among a generation that would have simply institutionalized children like Jack, you have encouraged me to fight every step of the way for him.  You have always been there for me when I needed someone and for that I am truly grateful.

To Jack's grandparents, thank you for loving him.  Thank you for seeing what is special about Jack in spite of his challenges.  Thank you for having the courage to express concerns to us and helping us move past our denial about Jack's situation.  Thank you for being there for therapies and doctor's appointments.  Thank you for being there so that Brian and I could get a much needed break.  Thank you for listening to our pain and not dismissing it, but embracing how we feel and making us feel validated.  Thank you for being there when we couldn't tell anyone else.  You help make this journey a bit more bearable for us and make us feel less alone.  For that, I feel very thankful indeed.  I wish that all autistic children had grandparents as wonderful as you.

Monday, September 19, 2011

Who Needs Toys When You Have Detergent Tins?

The Great Wall of Jack.
With the holidays and the holiday shopping season a couple of months away, I've been taking inventory of what Jack might want/need/already have in anticipation of a visit from Santa Claus.

Jack, for the most part, still plays with infant toys.  He doesn't pretend play, and the toy kitchen that his grandparents gave him last Christmas sits woefully unused, except with other children come over and play with it.  I've never once seen him put a toy phone up to his ear to talk.  He does play with some Thomas the Tank Engine wooden trains, but by "play" I mean that he lays on the floor and rolls them back and forth past his eyes.

He's just started building small towers with some large, rubbery blocks, but even that can become a bit stimmy.  He'll build a tower, knock it down (either on purpose, or accidentally), and then run a circuit around the couch before starting the process all over again.  I wish I had that kind of energy.

Primarily, his favorite toys are the things you'd least expect.  Detergent tins (they're empty, I promise!), rolls of paper towels, random boxes, coffee tins, oatmeal containers, and spoons are recent favorites.  He's taken to lining them up in front of the TV, as though he is walling the TV off from the rest of us.  The spoons usually just get carried or mouthed until I find them lying around in the most random of places (I found one in the car the other day...I don't even remember him bringing one into the car!).

Bubbles...they're not just for popping.
He also likes to line up bottles of bubbles, which thankfully all have seals on the inside so that a slip won't cause my kitchen to be flooded with bubble liquid.

What's interesting is that he always lines these objects up in the same places.  Bubbles always get lined up at the breakfast table in the kitchen or on the floor by the refrigerator.  If they're by the fridge, the bubbles are lined up parallel to the fridge.  If they're on the table, they're perpendicular to the fridge.  Go figure.  Everything else gets lined up in a straight line parallel to the TV.  There are a few exceptions, as I've seen him line up drawers from the play kitchen at his therapy clinic on occasion, but he usually takes to playing with a bead maze whenever he's there.  I've always wondered what it is that makes kids on the spectrum line things up like this.  There has to be a reason.

Other toys he plays with a lot include the bead maze (he liked the one at therapy so much that I bought him an identical one for at home) and an electronic, light-up drum that he's had since he was a baby.  He always plays with them in the same way, though, so it makes it difficult for my imagination to envision what he might want to play with or not.  Thomas Pez dispensers are a favorite, too, but I hate to get him fidgets for Christmas.  The other way he plays is by just running around and knocking stuff off of surfaces, like a human version of the Tazmanian Devil.

Not to mention that he can't tell me what he wants for Christmas or what he wants to play with.

So, I'm at a bit of a loss.  I could ask Santa to bring Jack some dishwasher detergent and coffee (present for Mommy and Jack!) and a laundry basket, which as you may recall he loves to spin, so Mommy keeps them hidden away so that he can't stim on them.  I've also thought on the more practical side, like getting him a toddler bed for instance, except that I'm not sure he's developmentally ready for the freedom an open sleeping arrangement like that would provide.

I've also thought about a swing, like a therapy swing to put in a doorway, or a toddler swing for the backyard.  Ugghh...decisions, decisions.  At least I have a few months.

Any ideas on what to get the kid who doesn't play appropriately with toys?

Friday, September 16, 2011

Don't Lick the Floor

Bacteria mixed with dirt and other unimaginable
substances.  Yum.
I've discovered that there is one really good thing to having a child who stims, hits, and generally can make people feel uncomfortable.  People get things done to get you out!

Hence was my experience at the DFCS office yesterday.

No, I wasn't going for anything bad.  These people happen to be the gatekeepers of Medicaid and thus had the forms I needed to have Dr. DP complete.

Now, a little background.  I had been calling this particular DFCS office for weeks.  As soon as I got our SSI denial letter in the mail, which is the first step in the Katie Beckett Deeming Waiver process, I began calling the DFCS office.  And calling.  And calling.

Most of the time, I'd get a busy signal.  When I didn't get a busy signal, I'd get a voicemail.  After an insanely long message, in both English and Spanish, I would be told that the mailbox was full.  Thank you, government bureaucracy, for wasting 7 minutes of my time and cell phone minutes.

Every once in a blue moon, I'd actually get to leave a message:

"Hi, my name is Reinventing Mommy (not what I'd actually say).  I need to get some information about a Katie Beckett Deeming Waiver for my son.  Please call me at 867-5309 (if you know the reference to that number, you've just shown your age).  Thanks and have a great day!"

After the weeks dragged on and no one returned my calls, here is what the messages sounded like:

"Hi, this is Reinventing Mommy.  I've been calling for a few weeks trying to get information about a Katie Beckett Deeming Waiver for my autistic son (I felt as though putting that qualifier in there might help me get a return call).  Please call me back ASAP at 1 (800) CALL-NOW (again, not what I actually said).  Thanks."  Click.

A few more weeks, and I was calling with clenched teeth.  Without some restraint, the message may have sounded like this:

"Listen, government a$$holes.  I have been calling for weeks.  I'm tired.  I'm hungry.  I'm covered in vomit.  Call.  Please.  CALL!  Damn you!  1 (800) SCREW-U2!  CALL ME!  ARRGGGHH!"  Click.

Alas, my pleas did nothing.  I was going to have to suck it up and go down to their office.

What I found looked like nothing short of a hell-hole.  The office building the DFCS office is housed in looked like it was practically abandoned.  There was cardboard up on the windows of empty 1st floor offices.  I instantly had visions of a serial killer jumping out of the elevator at me and Jack.  I was certain I was not going to make it out of this building alive.

No, that's not a new paint job.  That's
tetanus and diphtheria.
Or without some rare disease.  I was glad I'd had my tetanus shot.

Jack and I got on an elevator that seemed like it was probably someone's home in the evenings.  Oh, the smell.

Luckily, the DFCS office actually was located in this building and our trip into the wasteland was not for nothing.  However, entering that office was about as pleasant as the building itself.  I could almost feel Jack's anxiety as we walked into a waiting room about half the size of my living room, but containing no less than 40 people.  Excellent.

I headed up to a counter where no one seemed interested in acknowledging my presence.  I saw a sign-in sheet before me with about 40 names on it, none of which were marked off, and a big note that said "Sign in for anything - even asking questions."

The man at the counter was willing to acknowledge the lady behind me (yeah, I know, because I'm invisible) in line.  She asked how long the wait was.  He said hours.

HOURS?!?  Holy crap!  I had to speak up.  "Excuse me?"  He rolls his eyes at me and responds, "Yes?"

"Look, I don't need to see or talk to anyone.  I just need copies of the forms for me to file for a Katie Beckett Deeming Waiver for my son."

"A what?"

"A KATIE BECKETT DEEMING WAIVER!"  Need I spell it for you?

"Oh, let me find someone who knows how to find those forms."  What?!?  Someone has to be trained on finding the right forms?  "It'll be a few minutes."

Great.  Of course, there is no seating, and no one seems willing to give up theirs for me, so Jack and I stand there.  And stand there.  And stand there.  

Jack wasn't having it.  I can't blame him.  That waiting room was the last place that I wanted to be, but I could see the meltdown coming.

First, a security guard came up and started scolding him for biting his arm.  I kept pulling his arm out of his mouth, and it kept going right back in.  The security guard commented that he was going to bite his arm off.  I highly doubted that, but still.  I kept stopping him from biting himself, which caused him to start flailing.

In the battle of flailing toddler vs. Mom with tendonitis in her hand, toddler won.

He started squirming, so I put him down on the floor, but he kept bolting for the door.  We repeated this cycle of getting picked up, flailing, being put down, and bolting for about 10 minutes.  After that, the next time I put him down, he started licking the floor.

EWWW!

Now, this is another instance where I know that Jack doesn't understand what I'm saying, but I still feel the need to say, "Jack, no lick!"  Of course, this prompts others to stare.  Jack didn't care what I was saying.  He didn't care who was watching.  He wanted to lick that floor, so he was going to lick that floor.

To prevent Jack from getting hepatitis or ingesting heroin, I picked him up.  The meltdown ensued.  He started smacking me repeatedly in the face, which hurt, but I just tried to ignore the pain.  The same security guard kept saying, "Oh my!  Oh my!"  Thanks, that's helpful.

She finally suggested that we might have a private room.  As I looked around at the very uncomfortable faces of the people in that waiting room, I decided this might be a good idea.  Then again, if we went to a private room, I might get forgotten.  Thanks, but no thanks.  If you want to make me wait, you have to deal with me, autistic toddler and all.

That call worked in my favor.  Jack was making everyone so uncomfortable with his screaming, stimming, and WWE wrestling match with my face that people started moving fast to get us out of there.  As a woman behind the counter handed me the paperwork, she told me, "We don't deal with this here.  Next time you need to go to a different office."  If you'd ever answer the phone, maybe I'd have known that!  Don't worry, I didn't really want to come back, either.

So, off we went.  We rapidly exited the building (avoiding assault yet again) and ran for the car.  At the car, I strapped Jack in with him drooling and chewing his shirt.  He was a hot mess, but we were done and heading home.  Poor kid.  He was about as big of a trooper as I could have expected.  I was nursing a headache, but we were leaving.  Hopefully, next year things will go a bit more smoothly.

Hopefully, the building I need to go to next time won't look like something out of The Matrix.


Thursday, September 15, 2011

Mamas, Don't Dress Your Preschoolers Like Hookers

She's shocked that you can find her outfit in a 3T.
There are some days that I am very glad that I am the Mom of a little boy.

I'm watching the news last night and I see an interview of a mother and her barely 3-year old daughter who were featured on TLC's show Toddlers and Tiaras.  Now, I've never watched the show personally, for several reasons:

  1. I believe that TLC has created the perfect show for pedophiles.  Watching it would only increase the show's ratings and help it stay on the air.
  2. I think some of these pageant moms, but certainly not all, are bordering on crazy, if they haven't already crossed over that line.  Highlighting them in a show only serves to encourage more parents to pour on the crazy in order to get on TV.
  3. What about the kids?  Some of the kids seem miserable, so why support it by watching?
  4. What about the bratty kids?  Some of the kids have ridiculous requests, like a 6-year old wanting a double-latte before a pageant or fake teeth.  Seriously?  You're a kindergartner.  Drink your apple juice like everyone else.  I'm not going to support your habits, either.
This mom featured on the news hit a new level of crazy.  She dressed her barely 3-year old daughter up like Julia Roberts in Pretty Woman.  Not Julia Roberts in the designer lady-like outfits that Richard Gere provides her.  This little girl was wearing a 3T version of Julia Roberts's hooker outfit.

You heard me right.  She dressed her 3-year old up like a prostitute.

This mom doesn't seem to have learned from the negative publicity this has generated, either.  She insists that the hooker outfit was less revealing than the outfits worn by many of the little girls in the swimwear portion of the pageant.

My response to this is two-fold.  First, there is a swimsuit portion of a pageant for toddlers?!?  WHY?!?  That just seems creepy.  Second, she's right, her daughter had more fabric on her body than a swimsuit, but it doesn't take away from the fact that she DRESSED HER LIKE A HOOKER!!!

Being the philanthropist she is, this mom is now auctioning the outfit off for charity.  So, if you're looking for a hooker get-up that comes in a 3T, you better hurry before it's gone.

This mom did seem to get the message that maybe she shouldn't put her 3-year old on TV again, because you're going to get labeled with a big ol' Sharpie full of crazy.

What was even more surprising was the audience's response.  The news ran an informal poll asking people whether or not they thought that outfit was inappropriate for a preschooler.  As expected, the majority thought that it was inappropriate.  However, by majority, I mean around 57%  The rest were undecided or thought the outfit was okay (approximately 38%).

That many people think it's okay to dress your preschooler up like a hooker?!?

Now, not being the mom of a little girl, maybe I'm missing the boat on this one.  Weigh in on this - is it okay for parents to dress their children up in outfits that represent something inappropriate (I'm assuming everyone considers prostitution to be inappropriate)?

Wednesday, September 14, 2011

Weight Loss Wednesday: In Times of Stress


This week's stats are:

Starting weight: 180 lbs. / Goal weight:  135 lbs. / Current weight: 172.2 lbs.

This past week has been one of the hardest for me since I have been back on Weight Watchers.  After getting the news that Jack was going to only get 20 therapy visits annually no matter what and that we were about to lose those visits, plus learning that we would be losing Jack's weekly special instruction, you could say that I was under a bit of stress.  

I deal with stress in one of two ways.  I either stop eating (I lost tons of weight around the time Jack was diagnosed) or I gravitate toward comfort food.  Last week, it was a combination of the two.  I wouldn't eat early in the day, but then I would gorge at night.

I also wasn't working out.

Amazingly enough, I still lost 3 pounds, which was enough to have Weight Watchers post a little dialog box in my tracker that is informing me that I'm losing weight too quickly.  It informed me of the health risks of losing more than 2 pounds weekly.  Unfortunately, I think my body is in the driver's seat on this one.

The reality of it is that stress is a part of life when you have a special needs kid.  You desperately want progress in your child.  You also have a fear that your child won't get what he needs.  It makes it difficult to feel like you have the energy to cook a healthy meal or to workout.

Thus far, I've found no good way to manage stress.  By good, I don't include tucking into a pint of Ben and Jerry's Chocolate Fudge Brownie.

I wish I had some good advice on this, but I don't.  So, for today's Weight Loss Wednesday, I'm asking your advice.  What do you do to help relieve stress, other than gorge on Oreos?

Tuesday, September 13, 2011

Being Human

In the past, I have tended to vote Republican.  It was how I aligned my political views, for the most part.  You might say I've always been a much more moderate Republican than most, but let's face it, political parties don't put candidates up that tend to lean in the other direction.

At this point in my life, I'd say I'm a true independent.  I'll vote for anyone, be it Republican, Democrat, or Martian, who is going to preserve the programs and enact legislation to protect my son and give him the care he needs.  What can I say...I'm a little biased these days.

Today at lunch, I started reading a story from last night's tea party Republican presidential debate on CNN.  Apparently, Ron Paul, both a candidate and a doctor, was asked what society should do if a healthy young (say, early 30s) man chose not to purchase health insurance, and then that same individual were to go into a coma and require intensive care for 6 months.

Paul said that it shouldn't be the government's problem and that having freedom was about taking your own risks.

That to me seems bad enough, but the appalling response wasn't from Paul, but from the audience.  When the moderator Wolf Blitzer then asked if we, as a society, should just allow that person to die, the audience chimed in with shouts of "Yeah!", laughter, and cheers.

That my friends is a disturbing view of humanity.

Here's my problem with this argument, besides the audience's disturbing response, what if you changed the scenario a bit?  What if instead of a 30-something who elects to decline health insurance, it is a 30-something who declines health insurance for his entire family?  Then, what if it's his 5-year old daughter who goes into a coma and requires 6 months of intensive care?  By saying it's not the government's problem, aren't we in fact saying that it's okay to watch that little girl die, because her father assumed a risk on her behalf, as parents are entitled to do?  Where is the help for that little girl who, through no fault of her own, does not have the health insurance that would allow her access to care?

What if that man just started a new job, one in which his FMLA rights had not kicked in and his health insurance wouldn't start for another month?  What about him?

What if that man's health insurance did not cover the services he would need to survive and be rehabilitated?  What about him?

What about the two-income family in which neither parent's job offers health insurance, but they make just above the threshold for Medicaid?  That family has to make the choice to feed their children and provide a roof over their heads or purchase an expensive individual policy.  What about them?

Individual policies, ones not negotiated through your employer's benefits program, can get very expensive.  Without the health care reform passed last year, that would leave the working poor without coverage, simply because they can't afford it.  What about them?  Should a lack of financial resources to afford health insurance mean that medical care should be out of reach?

Paul, for his part, said that it was not acceptable for society to allow him to die, but that non-profits and religious organizations should step in.

If that's the case and those organizations will step in and assist those who otherwise would need government assistance, where are they?  They aren't helping children with developmental disabilities right now, that's for sure.

Back to the audience.  Even if society decides that it's okay to allow a single man, one with no family obligations and who took a risk in not securing health insurance for himself alone, to die as a result of that lack of coverage, what kind of society are we to not just state our approval, but cheer and laugh at this man's passing?

Shame on those who do so.

It may not be the government's Constitutional obligation to care for the indigent, the disabled, and the elderly, but is it not our obligation as human beings to do so?  In that respect, the government, as elected and granted power by its people, being an arm of the people it represents, could be the mechanism through which we as a benevolent society care for our less fortunate.  The people who wash their hands of the less fortunate and say "It's not my responsibility" are able to do so because they have never been in that situation.

I'll say that I "defriended" someone recently on Facebook who continuously posted about how Medicaid should go away because it wasn't the government's, or society's, responsibility to provide health care to anyone.  It is easy to say that when you have the resources and no one you love is battling a serious illness or has a disability.

Here's how this affects my life.  My child has autism.  He should be getting the following weekly:

  • 2 - 1 hour sessions of speech therapy
  • 2 - 1 hour sessions of occupational therapy
  • 1 - 1 hour session of aquatic physical therapy
  • 1 - 1 hour session of special instruction (ABA therapy)
I have health insurance, but my health insurance covers 20 visits each annually of "short-term rehabilitative care".  Do the math; Jack needs more therapy than 20 visits annually of any of his therapies.  Each session of therapy (minus the special instruction) costs at least $200/hour.  His special instructor costs a bit less, but there's still a cost.  Right there, you're talking at least $1000/week of therapy.  This is therapy to help him eat, communicate his needs, and learn self-help skills so that he may one day live an independent life and be able to contribute to society as a taxpayer himself.

No family can afford $1000/week.  When insurance drops the ball, families either have to scramble to pay for therapies, potentially bankrupting themselves to give their children a chance at a future, or they have to forgo some of the recommended therapies.  Right now, we forgo some therapy.  Jack only goes to speech and OT once a week.  He only sees his special instructor once a month.  This affects his progress.  We only recently had his special instruction dropped to monthly.  I expect to actually see some regression as a result.

There would be some, and many do, who say it is our responsibility to pay for Jack's care.  True, we aren't asking for handouts, but we are applying for a Medicaid waiver to allow him to get secondary coverage through Medicaid so that he can get the treatment he so desperately needs.  Ultimately, it serves society's best interests for Jack to be able to contribute.

It scares me when I hear that people wash their hands of any obligations to their neighbors.  It scares me to hear them laugh at someone's suffering.  It seems as though a piece of what makes us human dies with each laugh.  It is easy to laugh at the "death" of a hypothetical man.  What about laughing at Jack?  Laughing at a child who isn't dying, but who isn't getting the coverage he needs to develop into an independent person?

It's easy when it doesn't affect you.  I pray that for each of you, it never does.  I hope that you never have a child with a terminal illness.  I wish that you never have a child with a disability.  However easy it may be to say that it doesn't affect you, one day it might.  Then, will your opinion change?

When I think of that healthy, 30-year old man in a coma, dying because he isn't the government's responsibility, I think of the mother sitting next to him, tears streaming down her face, begging anyone to please help her son.  To please save her son's life.  My son isn't dying, but I've been that Mom.  I've been on the phone with insurers begging them to please provide the care that my son needs so that he can talk, eat, and care for himself so that he can live an independent life.  I've cried because an early intervention window has been closing and I felt as though no one wanted to help.

As we go to the polls in the coming year, let us not forget what makes us human.  Let us not forget the compassion that makes our country great in times of need.  Let us not allow fear and mob mentality to skew what is meaningful.  Remember that just because you don't need a particular service or public program doesn't mean that you never will.  Place yourself in someone else's shoes just for a moment when you consider all the issues.

Above all, remember what it means to be human.  Hold that thought as you cast your vote and mark your ballot in a way that reflects the hope over the fear.


Monday, September 12, 2011

Toys You Won't Find in the "Guide"

Every year, Toys R' Us puts out it's Toy Guide for Differently-Abled Kids.  I think it's a great thing, because it's hard to tell people what to get your kid when A) he doesn't really play with toys (I say as he's playing with a plastic bottle of apple cider vinegar), and B) he still plays with infant toys.

Perusing this year's guide, I noticed that there were several toys left out, and with good reason.  Here are some toys that probably should be left off of everyone's holiday list:

1.  Rescue Pets Train N' Play Puppy

Baby dolls that pooped always bothered me on some level.  Now, you can get a toy dog that poops plastic "nuggets".  Fantastic.  If your kid really wants to clean dog poo, send them my way.  I have a back yard that they can go absolutely nuts in.

2. Play Doh

Play-NO!  Some sensory-seekers love the stuff, running their fingers through it.  My son, on the other hand, would just as soon walk through burning coals (holding a Thomas Pez dispenser, of course) than touch the yucky consistency of the stuff.  From a Mom perspective, I still recall having tons of dried Play Doh in our basement's shag carpet (the lovely puke-green stuff it was) as a child.

Leave foam out of the guide, too.

3. Vanilla Ice Baby Doll

What says the holidays better than a plastic figure in baggy pants?  How about a 90s rapper in baggy pants?  I get the feeling that Jack won't suffer from not being able to pretend play with this.  Maybe I you could get your child a Bratz to go with the Vanilla Ice?  On that thought...

4. Bratz

Special needs kids, mine definitely included, need lots of help with social skills.  I get the feeling that the social skills that we want to teach our kids don't include:
- Wearing trampy outfits
-  Keeping your lips in a constant pout
-  Being a future trophy wife
My kids social role-models need to not be characters known for the fact that they are considered "Bratz".  I'm just sayin'.

5. The Breast-Feeding Baby Doll

Breast-feeding is the natural and recommended way to feed your baby.  Hell, I'm sure we've all seen little girls put their baby dolls to their chests, mimicking Mommy.  However, when they sell a doll that not only nurses, but that comes with "nipples" to adhere to your child's shirt, that may be crossing the line.  Imagination, okay.  Bordering on reality?  A tad creepy.

6. Pole-Dancing Doll

I don't care what anyone says, this doll will not help your child A) gain physical skills or B) gain social skills.  The physical/social skills this doll encourages are NOT the ones you'd wish to foster in your child.  For little boys, if they get their hands on this, it might become another fixation.  Buyer, beware!

7.  Gonorrhea Plush Toy

Oh, what's that your little one is using as a fidget?  What's that cuddly toy your child is noshing on?  H1N1 flu, you say?  How cute, because what parent doesn't want their child snuggling swine flu?  If you think that might be a bit too benign, what if your child's new fidget or comfort item was a plush gonorrhea? This microbe may look cute and cuddly and may come in a size convenient for the fidgets we parents look for, but it still causes the clap.  It seems like a poor choice for the guide, and the Christmas tree.

Now, the biology nut in me did get a kick out of GIANTmicrobes venereals line.  Just in case your clap wanted an HPV buddy.

8. Sit and Spin

I had a Sit and Spin as a child.  It made me feel like I was going to projectile vomit.  What can I say?  Rotary movement doesn't work for me.

Now, Jack spins himself as a stim.  He spins objects.  He loves watching things spin.  I imagine if he got one of these, he'd never get off.  I'd have to feed him as he spun.  Actually, he wouldn't have the motor skills to spin himself, so I'd have to feed him while Brian kept him spinning.  It would be mesmerizing to him, like a child-sized Wheel of Fortune.  The amount of Floortime we could do with this in our house?  Zero.

9.  BB Guns

While Ralphie may have dreamt, and received, and official carbine-action, 200-shot, range-model air rifle, the odds of Jack getting one ever are slim to none.  I'm guessing that gun safety isn't something we want to attempt any time soon, as potty training looks to allude us.  Not to mention that Jack manages to smack, kick, or scratch me on a daily basis, so I'm sure with his social skills he wouldn't understand my pain if I were to take a BB to the butt.



10.  Death Threat Elmo

Elmo - the loveable, cuddly monster from Sesame Street.  Better watch your back, because he has a mean streak.

He grew up on "the street", so what did you expect?  Well, this Elmo says that he wants to kill your child.  Being the mom of a kid who produces a ton of echolalic speech, the last thing I need him to repeat is "Kill Jack".  We'll respectfully ask that no one gives this to Jack this year.

So, thank you, Toys R' Us, for refraining from including these "toys" in your catalog.

Those of you with Jack on your holiday gift list, I would ask that you please do not give him STD fidgets or dolls that seem to threaten to kill him.

What's the one toy you'd never want to enter your house?

Friday, September 9, 2011

Never Forget

As we approach the 10th anniversary of the attacks on September 11th, I'm reminded once again of that day.  It's a day I will never forget.  I don't think that any of us who were old enough to have an understanding of the events as they unfolded will ever forget.

We all have a story about that day.  Our stories are all vital to helping our children understand exactly what that day is about.  Here is how I remember that day.

It was a Tuesday.  It was the Fall of my 2nd year at Georgia State.  As always, I jam-packed my schedule full of classes, and Tuesdays/Thursdays were marathon days.  Unlike friends of mine who liked to sleep in and go to classes later in the day, I always opted for classes early in the morning.  Doing that would allow me to come home, get some lunch, and study before my roommates got back from school/work.

Tuesdays/Thursdays were crazy days.  My day started with Public Health, then I had Physics, and finally a Biology lecture.  No labs, thank goodness, but hours of lectures.  I got up, got my breakfast and coffee, and started my walk to the North Avenue transit station.  It was about 7:30 in the morning on what seemed like a beautiful Fall day.  The walk was pleasant.

My first class started at 8:00 AM and let out shortly after 9:00 AM.  It was a pressure-cooker class with rapid-fire information.  I always loved Public Health and kept an intense focus.  Coming off of the focus of that class, I heard very little except for the regular buzz of the building.  My class was on the ground floor outside of the constantly malfunctioning elevators of General Classroom, which anyone from GSU can identify as one of the busier places on campus.  I went in search of a coffee refill from a vending room, then it was off to Physics.

My professor was just slightly less interesting than counting grains of sand, complete with a pocket protector.  I remember sitting in that class trying not to sleep, as always.  Around me, I heard murmurs from the other students, but seeing as I was on lecture #2 of the day, I heard little as I grasped to remain awake and alert.

It was approaching a little after 10:30 AM when class let out.  As I arrived in that class, I heard fellow students speak of a plane crash in New York.  While tragic, it didn't register any alarm in my mind.  Bad things happen occasionally.  Plane crashes, while rare, tend to be isolated unto themselves.  No one is hurt other than those on the plane.  I remembered briefly thinking that I should turn on CNN when I got home to see what had happened, but I thought little of it.  The professor walked in.  He was the type that fired information so quickly that it left your hand hurting from the note-taking at the end of class, so I switched to hyper-focus so that I could get it all.

About 40 minutes into the lecture, the double doors of the lecture hall burst open.  An administrator walks in and says that the university is closed effective immediately.  Everyone gets up and streams out, as I am left at the table wondering what has just happened.  Our professor, who normally would have continued lecturing even if a fire alarm went off, has raced out of the classroom.  So did everyone else.  It was as if they expected it.

I gathered my things, located my transit card in my wallet, and was one of the last out the door.  The hallway was eerily silent.  Occasionally, a student would pass at a bit of a jog.  The haste with which everyone was moving started to alarm me.  It was as if everyone knew something that I didn't.

As I walked down the hallway, I heard the faint hum of a television switched on in a classroom.  As I approached the door, I saw a small contingent of students huddled underneath the wall-mounted TV.  It was switched to the news.  Some of the students were shaking.  Several were crying.

Immediately, I felt fear.  Something wasn't right.  It didn't even occur to me to ask what was going on.  It was as if I would intrude.  Instead, I glued my eyes to the TV, searching for some sign of what was going on.

That's when I saw it.  A plane hitting the World Trade Center.  Then another.  Another plane hitting in the exact same manner.  It clicked immediately in my head.  Our country was under attack.

I knew I needed to get home.  To the safety of home.  Everyone was visibly scared.  I watched no more and promptly turned and left the room.  I picked up my pace and walked briskly outdoors.

What I saw stays with me to this day.  The number of people on the streets in Atlanta was like nothing I'd ever seen.  There were more people on the sidewalks than I ever recall seeing, even after a Braves' game.  I pulled out my cell phone to call my roommates to see if anyone with a car was still on campus.  No signal.  I tried again.  All circuits busy.  The crowds were heading toward the Five Points transit station, so I started to follow the movement of the ocean of people who were fleeing their offices and classrooms.

When I got to Five Points, the transit cop had all of the turnstiles open and was telling people to just get on the trains.  Again, it was a scene I'll never forget.  Normally, midday on MARTA, there are no passengers.  When I'd come home from class around lunchtime, it was me and a few other passengers.  At nearly noon on September 11th, the train was packed.

I was, surprisingly enough, one of only a handful getting off in the city.  Everyone else was heading further north.  As I walked home, I saw large numbers of people leaving.  As I entered the student housing complex and walked into my apartment building, I was struck by one thing...the silence.  People had fled.

In my apartment, I tore open my curtains.  I wanted a clear view of the skies.  Then, I turned on the TV.  That's when I saw that both towers had fallen from their wounds.  My first thought was of the overwhelming loss of life in New York on that seemingly beautiful morning.  Then I saw that there was a crash at the Pentagon.  And another in Pennsylvania.  As I looked down from my living room window, 10 stories up facing the Downtown Connector, I realized why everyone was fleeing.  No one was safe.  It seemed like planes were coming from everywhere.

I went back to my bedroom and saw that I had a lot of messages on my answering machine.  One from Brian.  Several from my mother.  She wanted me to come to her house.  I agreed and went, for a few hours.  As the afternoon faded into evening, it seemed as though all I could do was watch the news.  Brian was at his parents' house and would remain there overnight as Emory was closed the next day as well.  GSU was to resume classes the next morning.  I decided to go home.

Another image that sticks in my mind from that day was one I encountered on the drive home.  Passing under the electronic traffic signs, I noticed that they all read the same message:

National Emergency.  All US airspace is closed.


Back at home, the buildings retained the same disturbing silence that they did before.  My roommate Christine was home.  Our bedrooms were next to each other, so we sat in our doorways talking for a long time, trying to process the events of the day.  Trying to understand what had happened and how our world, and our lives, had just changed.  This event would define our generation.

Knowing that I had an 8:00 AM Statistics class waiting for me in the morning, I tried to settle into an uneasy sleep.  Normally, I kept my room-darkening curtains shut tight, because the glow of the city below my 10th floor window was enough to keep me awake.  That night, I slept with the curtains open and my TV on.  I wanted to see anything that might happen, as though seeing it might buy me time to escape.  I wasn't convinced that it was over.

It was an uneasy sleep.  It would remain one for several days.  I was one of about 5 people to attend my Statistics class the next day.  The rest of the week was permeated my that stillness.  It was as if the nation had momentarily stopped living.  I went to my classes, because I was a nerd like that, but I'll admit that there was more on my mind.

I think it's that fear that we all felt that is going to be difficult to convey to our children.  My son, and even some of my siblings, were either so young or not even alive at the time; they will have no personal knowledge of that fear.  That sense that the safety of our country was no longer there.  It would have been easy to stay at home and hide, but we couldn't do that.

It was a terrible day, but a day full of courage and community and strength that our nation sees so rarely amongst the most ordinary of people.  It was a day of heroes and lives lost.  It was a day that our lives changed forever.  It occurred to me on my last flight to FL that Jack will never know what it was like to  go meet someone at their airplane.  In his world, you only get to see planes if you'll be boarding them.  You always remove your shoes.  You bag up your carry-on liquids.  It's a different world.

It's a day that none of us will ever forget.  This day will always bring pause, as it should.  Every year of the rest of my life, when the calendar rolls around to September 11th I will always remember what that day was like for me.  What it was like for us all.  I'll remember the innocent people who were lost.  When Jack is at a point when I think he might can understand, I'll talk to him about it.  I'll keep talking to him every year until he can understand.

Our children need to know these stories.  Through them, the world will not forget.  God bless the innocent people who, like you and me were just going about their lives, but passed on that morning.  We won't forget you.  We'll never forget.

Feel free to share your stories from that day so that our children can know how their world came to be what it is now.

Thursday, September 8, 2011

Wounded, but Never Defeated

Tuesday night - 7:00 PM.

My face looks like hell.  I've been crying.  I've been pleading.  I feel so alone.  I am trying to do everything I can to help my little boy.

I've spent over 2 hours on the phone with our insurance company.  I feel beaten, worn down, and confused.

I submitted an urgent request last week for additional visits for speech and occupational therapy.  It has been determined that Jack really needs to go to both therapies twice weekly.  He needs help with his feeding.  He's not considered "failure to thrive", but at a skinny 26 lbs., he's a teeny-tiny 2.5-year old.  However, with all that his therapy team has to do to work on his feeding, they don't not enough time to work on the other areas in which he needs help.  So, we filed for additional visits last Wednesday.  This was after an initial filing and then a lengthy process to re-file and provide enough information to compose novels on why twice weekly therapy is medically necessary.

In an email, Jack's OT asked if I had heard anything from the insurance company.  I didn't expect to at this point, and I told her as much, but I figured I'd call and check anyway.  The squeaky wheel gets the grease.

Upon calling, the representative said that it looked like the requests had been approved.  Fantastic!  For how many visits, I asked.  35 each, in addition to our 20 visit plan limit.

I felt like I'd hung the moon!  After several times of asking her to confirm this, and after taking her name down, I hung up and felt great.  I posted the following FB status:

We just got approved for additional visits for speech and OT!!! Jack can truly get all of the help we can provide to him! Jeanie = 4, Insurance Company = 0. Yay!!!
However, knowing the incompetence of our insurance company, I called back for clarification about the approval.  The representative I talked to that time told me that the request was "pending".  Then, she told me that she could see no information regarding the request at all.

I've been given the run-around before.  They gave me 3 different procedures - from 3 different representatives, mind you - for filing this request in the first place.  They couldn't tell me whether or not my GAP exception meant that visits approved as being "in-network" would even be covered.  When I originally filed the GAP exception for Dr. DP, I was at first told that I could file it myself.  Then, I was told that our primary care physician had to do it.

Needless to say, I've become very versed on the language of medical coding, billing, and insurance.  I can tell you the CPT codes for various therapies.  I know that you always say that procedures and therapies are "medically necessary", because that's the language they need to hear to cover it.  You also always point out the cost effectiveness of covering a certain procedure (more therapy now = less therapy later, and therapy will get expensive as Jack ages if he requires continuing services).  I also know the code in Georgia law that requires coverage of Autism Spectrum Disorder treatment as prescribed and supervised by a psychiatrist/psychologist (I have it written down...don't make me get up to get it).  If I ever can work again, I just might find a new career in medical coding and billing.

After the run-around this time, I lost it.  I was frustrated, confused, and ready to b!$&#-slap someone from here to New Jersey.  I'll ask Brian's family in New Jersey to please slap them again once they get there.

The representative, plainly hearing my frustration, transferred me to a "Rapid Resolution" specialist.

I've had my fill of "Rapid Resolution".  Our insurance company constantly processes our claims wrong, because we have GAP exceptions for nearly all of Jack's therapists and developmental specialists.  Our insurer, one of the largest in the country, has no in-network providers for pediatric therapy or developmental specialists in the biggest city in the Southeast.  So, we have exceptions for all of these providers stating that they'll be covered at the "network" level, since our insurer has a "gap" in in-network providers in our area.  This causes nearly every claim to get processed wrong and chucked to our out-of-network deductible.  I end up having to call "Rapid Resolution" to get it corrected every time.

After hearing the same, nauseating elevator music that I've been repeatedly forced to listen to for months, I get connected to the RR specialist.  She looks into the matter and tells me that the request has been denied.  Jack will get the 20 annual visits as listed in our plan.  It was decided on August 16th.

I told her that I filed the request on August 31st.  She then told me that our plan had a "hard limit" of 20 visits and I'd never get any more than that.  When I asked why multiple people would tell me otherwise and give me appeals procedures, then ask for additional information to support those procedures, she told me something that made my blood boil:

You can file as many appeals as you'd like, but all you'll ever get for your son is 20 visits.


I was so mad that I began to bawl.  I asked her how they could do this to my child.  I asked if they realized that he eats mainly purees, can't feed himself, and can't express his wants and needs.  I told her that he can't tell if he's gone to the bathroom, leaving him to suffer from frequent diaper rash.  He can't use utensils, so he's completely dependent on others for self-care.  This is my child's life!  His future depends on this!

She didn't care.

I asked to speak to her supervisor.  The RR specialist said that she would put in a request to have him call me.  I told her that I expected his call Wednesday, but she told me that I would hear from the supervisor within 24 - 48 hours.  I told her that wasn't acceptable.  Her words - That's just the way we do it.

I got off the phone shaking.  I felt like no one wanted to take responsibility for giving my son the help he needs.  The insurers see autism as an incurable disorder, which it is, in which no real progress is possible, which is not true.  They expect to you to show "significant progress" to continue treatment, because the obvious solution to a child who isn't progressing is to pull treatment and call them a lost cause.  They won't take responsibility, because they expect the schools and the community to do it.

This is where insurance reform is vital.  To the people who claim that the community and non-profits can fill these gaps in treatment better than requiring insurers to do it, I'd argue that is not the case.  I have not heard of any non-profit who will cover all of the treatment my son needs.  Schools are strapped for funds, so they cut services to special needs children.  It doesn't matter if the law requires them to provide an "appropriate" education, because they don't have the money to do it.  One day, someone will have to pay to care for people like Jack.  We all will, ultimately.

God forgive us if we as a society turn our backs on our most vulnerable.

I had a good cry.  I have to fight.  My little boy is a delight and he deserves every bit of help that he can get to progress and live up to the potential that I know he possesses.  With help and instruction in the areas that we all just get naturally, but with which he struggles, Jack can move mountains.  He's smart, funny, and a joy.  To me, he is everything.

I'll be damned if I am not going to fight until I draw my last breath to advocate for all that my son needs to be the best Jack he can be.




Wednesday, September 7, 2011

Weight Loss Wednesday: My Go-To Easy Meals

This is bananas.  B-A-N-A-N-A-S.
This week's stats are:

Starting weight: 180 lbs. / Goal weight:  135 lbs. / Current weight: 175.2 lbs.

It's the end of week two of being back on Weight Watchers.  I've been surprised at how easy it's been to slip back into it.  I imagined I'd be pulling my hair out by now!  Granted, there have been a couple of times that I've wanted to tuck into a large piece of chocolate cake, but I've managed to resist the urge.

I think one of the biggest problems I've had is planning.  You only get so many PointsPlus per day, and while you get weekly PointsPlus, in addition to Activity Points earned, those extras won't always cover you having a Hot Fudge Brownie sundae.  In the midst of spending large portions of time this week working on appeals for additional speech and OT visits for Jack, sometimes a Hot Fudge Brownie sundae has been calling my name.

Alas, not for me.  I have come up with a few hunger-busting, easy meals that I can prepare quickly using a few staples.  They're portable and allow me to eat while on the run to therapy or while at home on eternal hold with the insurance company:

PB/Banana Roll-Up:  1 Whole Wheat Tortilla (soft taco size), spread with 1 Tbsp. of peanut butter, rolled around a whole banana.  There's only 6 PointsPlus in this beast and it really knocks out your hunger.

Cheesy Chicken & Veggie Roll-Up:  1 Whole Wheat Tortilla (soft taco size), spread with 1 wedge of Laughing Cow Light Cheese (whatever flavor you like best).  Place 3 thin slices of deli chicken (I like Boar's Head EverRoast Chicken) flat on the cheese and top with as many 0 PointPlus veggies (which is almost all of them) as you like.  Roll-Up and dig in for only 6 PointsPlus!

VitaTops:  No prep work here, minus defrosting and heating (I prefer them toasted).  These are great for breakfast, dessert, or just a quick, filling snack.  Loaded with fiber and vitamins, plus chocolatey goodness, they're a steal at 2 PointsPlus each.  My favorites are the Deep Chocolate ones or the Fudgy Peanut Butter (you have to order the Fudgy PB ones online, they're not in any stores I visit).

Pizza:  Yes, I said pizza.  No, I didn't say "cardboard-flavored low-fat pizza".  Each piece of your run-of-the-mill New York style cheese pizza is 5 PointsPlus.  Pile on the veggies and it's still 5 PointsPlus.  Feel like 2 slices?  Well, the PointsPlus total is a whopping 9 (PointsPlus work crazy like that).  3 slices you say?  You wild person, you!  Well, that sets you back 14 PointsPlus.  Considering the amount of food you eat for that many PointsPlus, I'd say it's a bargain.

Turkey Sausage or Canadian Bacon, Egg, and Cheese Frozen Sandwiches:  I actually have been able to find frozen light store-brand breakfast sandwiches with your choice of turkey sausage (so yummy) or Canadian bacon (also good), plus eggs and cheese on a whole wheat English muffin.  They're 7 PointsPlus, but with all the protein and fiber, they're really filling.

100 Calorie Popcorn:  When snacking, I need to feel like I've finished something.  Portion control works for me that way.  With 100 calorie mini bags of popcorn, I can eat 5 cups of popcorn for about 3 PointsPlus.  Now that's a filling snack!

Bananas:  I love how bananas are now 0 PointsPlus!  The come in their own wrapper, too!  This has been my go-to snack this week.

Readers watching their waistlines, what foods are your quick and easy go-to favorites?

Tuesday, September 6, 2011

Why my Autistic Child Will Be Getting a Flu Shot This Year

This almost makes vaccines and illness look cute.
Almost, but not quite.  I still see a needle there.
Warning to other parents of autistic children - you may not agree with what I'm about to say.  This is not a post to convince you to change your minds on this issue.  As always, I am not a doctor, and you are the one who knows your child best.  Do what's best for your family.

My kid has been fully immunized his whole life.  I have never turned down a immunization for him.  Some people would argue that may be why he's autistic.  I don't know about that, and all evidence right now points to the contrary, but if it is the reason behind his autism, then so be it.

I get asked frequently if I'll continue to immunize my son.  The answer is yes, I will continue to immunize my son, even if it were determined that the vaccines contributed to the development of his autism.  Unless a vaccine was contraindicated for use in my child, I would want him to have it.

Here's why.  My son is already autistic.  He always will be.  Nothing will change that.  His prognosis will get better, and I firmly believe that it will, with intensive, early intervention and therapy.  Nothing but therapy and hard work will help him progress.  However, my son will always be autistic.

I absolutely believe in the power of vaccines.  They are the reason why many more children don't succumb to illness.  They keep my child safe and healthy, but they also keep your child safe and healthy.  Regardless of whether or not your child is immunized, he or she receives the benefit of my child's immunity.  My kid is one less kid who can infect him or her.

Flu shots, in particular, are a contentious topic.  Many people, my husband included, still view them as largely unnecessary.  After all, the majority of the people who do indeed get the flu tend to suffer from illness for a few days, only to recover and be back to their jolly, or pain-in-the-butt, selves.

So, why get one, you say?  Several reasons.  First, the flu doesn't always end with an easy recovery.  Some people, in particular the very old and the very young, end up hospitalized with complications.  Some people develop pneumonia, which from my recent experience I can say unequivocally that you do not want to get.  Second, the flu sucks.  It really, really does.  I have only had the full-blown flu once, when I was in the 10th grade, but I felt overnight like I had been hit by a semi.  Everything ached and I felt like hell.  I couldn't eat, sleep, or hardly think.  I was sick for a week!  My voice was gone longer.  You don't want to get that, I promise you!

Third, and most importantly, I don't know for sure, but I imagine that the flu + autism = bad things.  I can see the regressive behaviors and meltdowns very clearly in my mind.  I can hear some of you now.  You're saying, "What about regressions from the vaccine?"  Well, yes, I am wary of regression.  Believe me, Jack went through a 2-week regression on starting Prevacid.  It was hell.  I'd rather not put him through the hell of illness, for my fear of a possible (or maybe certain) regression.  Unless a doctor told me this was a bad idea, I'd be inclined to still vaccinate him.

What about herd immunity?  Well, herd immunity really doesn't work on diseases that change so rapidly, like the flu.  That's why you need yearly vaccines; it changes.  Also, herd immunity assumes something important - herd immunity only works if the majority of individuals have immunity, either through natural exposure, which has to be verified by antibody titers, or immunization.  There is a certain immunization threshold for each particular disease that must be met before herd immunity is possible.  These thresholds require that somewhere between 80 - 100% of the population must have immunity for herd immunity to take effect.

So, what's the big deal if my kid's one of the 0 - 20% who don't get immunized?  Well, remember, you probably made the choice to not immunize your kid.  There is a portion of the population who cannot get immunized.  Due to various medical conditions, or their ages, certain vaccines are contraindicated in certain individuals.  So, if there are between 0 - 20 spots available to voluntarily abstain from immunizations, shouldn't we reserve those spots for the people who absolutely cannot have the vaccine?  Not to mention the fact that many, many people talk about vaccines and autism these days and I hear more and more people say that they are vaccinating either on alternative schedules (which delays some vaccines) or they're not vaccinating at all.  Do you trust your neighbors to vaccinate their kids so that you don't have to?  I didn't think so.  So much for herd immunity.

Jack's 30 month well-child check-up is at the end of this month and he, as well as myself and Brian, will be rolling up or sleeves (or pants leg, in Jack's case) to take the flu shot.  If you're anti-vaccine, that's absolutely your choice, but you should be informed.  Don't just say (or make the assumption) that everything will be okay for your kids if you don't vaccinate them.  If you make that decision, do it, but accept that you are taking on a risk, not only on behalf of your child, but on behalf of the people who cannot get vaccinated.  Make your own choice, but do so with scientifically-proven knowledge and without fear of a causative link that has yet to be proved.