Wednesday, March 31, 2010

Even if I don't have to worry about this yet....

Rachel has blogged about it. Ambrose has too. And you can read about it everywhere from People to ESPN to CNN.

The recent bad behavior of athletes is, to say the least a huge turn-off. Especially to parents. Me included. But this is not a new battle. Yes, we may not see many more Wayne Gretzkys--who we call the Great One not just for the player he was on the ice, but the man he is off of it-- or Cal Ripken Jrs. or Lou Gehrigs but let's be honest, this has been going on for YEARS.

Back in 1919-- Joseph Jefferson aka Shoeless Joe-- Jackson and his teammates earned the nickname the Black Sox after throwing a World Series. And let's not forget my team, the Yankees had Micky Mantle (among others) who was a notorious philanderer, alcoholic, and absentee father. Too bad the winner of the 1961 home-run race, teammate Roger Maris-- a faithful husband, devoted father and regular mass-attending Catholic--isn't as widely revered. And the list goes on and into other sports as well.

In the early 90's NBA player (and bad boy) Charles Barkley was the star people loved to hate. But Barkley made no bones that he wasn't a role model, in fact, he launched an entire ad campaign about it. He was urging parents to be their children's primary role models and discouraging the hero-worship of athletes.

This anti-hero campaign enraged parents, educators and lots of other people. But I remember my father saying, "You know, he's got a point." I remember that campaign years later because what Barkley was trying to do was admirable. Bad behavior shouldn't be tolerated but we, as parents shouldn't be encouraging our children to look to athletes or actors as role models. These people are high profile, no doubt, but are human and foul up. Some of them, a lot. What we should be admiring about them is the good qualities they possess IE- drive, work ethic, charity, humility (which is in rare supply among all of us these days). But that should not become a worship of that person.

I was talking about Charles Barkley before, do you remember who the antithesis (according to the media and ad campaigns) was in the NBA. Ding, ding, ding! You're right it was Michael Jordan. He could do no wrong. He could retire from the NBA and then come back. He could go play minor league baseball and make a stupid-silly space-basketball movie. He sold millions of dollars in merchandising. I live in Michael Jordan's hometown. His star has tarnished a bit. When he was working for/playing with the Washington Wizards, he brought them to town. He skipped out on bills at restaurants and had a flagrant affair that went front page in the National Enquirer. And while he is certainly responsible for his actions, we are somewhat responsible for his thinking he could get away with it. We idolized him. We bought his stuff. We started fan clubs and told him he could do no wrong. About the only people in life who didn't treat him that way were his father, James (RIP) and the Laney High School coach who cut him from varsity. We all used to say, "Wow, you know that coach is feeling stupid." But when the jig was up, we were left feeling awfully used and foolish ourselves.

My husband idolized Mickey Mantle as a kid. This went on long into adulthood, but, the moment my husband most talks about when he talks about Mickey is not about a great play made in a game but about a press conference that occurred years after Mantle had stopped playing when he was in failing health and broken down and in desperate need of a liver transplant. At the news conference Mantle addressed the idea of being a role model and flat out said, "I'm not a role model." He went onto say why: God had given him the body and the talent and he had abused and wasted both. He said this through tears. He had realized this too late.

And women are not exempt from this either. Marion Jones served time for using performing enhancing drugs and lying and was stripped of her Olympic medals. And there was this figure skater who hired a thug to take out her competition.

I am a huge sports fan. If there is a TV with hockey on, I'm probably in front of it. If it's Saturday in the fall, we are watching college football. No one cheers louder for a Yankee World Series victory. And I'm raising little fanatics myself. But, I plan on keeping them in check about idolizing the gridiron Gods and ice kings. I'll probably allow posters and for sure jerseys, but I plan to teach them how to be a good person without using Gary Goal-tender or Bobby Batter as an example. I will refrain from referring to a person I have never met as a humanitarian or without a doubt a role model.

Friday, March 26, 2010

What Every Mom Can Live Without

Inspired once again by Michelle, there are some things every mother thinks she has to have that she can really live without. Okay, maybe some moms are smart enough to figure out they don't need these things, but here's the idiot guide for the rest of us:

1) Baby monitors: Now I know what you are all thinking, I will never hear my baby wake up, or but I want to watch them sleep! Here's the thing, unless you have actually slept through an earthquake or your child's room is on another floor or wing of the house, you will hear them when they wake up. And if you're breastfeeding and your ears don't hear them, other parts of you will. As for the monitors with the cameras: unless you have a Houdini on your hands, you probably can do without watching your child for EVERY second of the day. And if your child is walking and routinely departs his crib before naptime is over solo: it's time for a toddler bed.

2) Baby detergent: You can use the regular free-clear detergent for baby's skin. It's less expensive and comes in bigger containers and you can do a whole load with it. If you get tons of free Dreft samples or gifts, use them, of course! But there's no sense in spending the extra money if you don't have to.

3) Pee-Pee Tee-Pees: Don't know what these are? Check them out here. If you don't have boys you definitely don't need them. If you do, just keep a few old wash clothes around the changing table. At least those are reusable. Once little guy is potty trained, what are you going to use them for?

4) "Step-Up" Formulas: Rest assured moms who formula feed, you can go from regular formula to whole milk (obviously this is excluding babies with allergies to cows milk, follow your pediatrician's instructions). You do it the same way you would wean, replace one bottle of formula with one of milk slowly. This is a marketing ploy by formula companies to keep your business another six months to one year.

5) Tummy-time mats: I was seduced by these too. And I received them as gifts. You can do tummy time on a regular blanket on the floor surrounded by toys and pictures. They do not build up strength any more quickly with a special mat vs without one.

6) Baby Einstein DVDs and CDs.: Again, if you get them as gifts fine. But your baby will get much more valuable intelligence building by interaction. And it's a lot less expensive to just play the classical music station or watch animal webcams or whatever. I'm not saying never, but you don't need the whole collection.

7) Subscriptions to Parenting magazines: The ones like American Baby or Babytalk (my favorite) that give you one year free if you subscribe when you're pregnant are great. But who really has time to read them when you're chasing a two-year-old. Or multiple children.

8) A monitor to watch the baby in the car seat: There are enough distractions when you are driving without a color monitor to watch the baby sleep. You are not making your child safer by taking your eyes off the road.

9) A stroller and a pram: One is enough, preferably one that converts between the two, but to have two such big pieces of equipment is not an efficient use of space.

10) Every baby naming book on the market: one is enough if you even need that since every website out there has a baby name function. And I'm sure there's an app for that too. Trust me, the meanings of the names haven't changed.

Now, I'm not criticizing those of you out there who, like me, have most of these things. But the temptation, especially for new moms, is to have EVERYTHING. All the new gadgets and gizmos, but babies, especially new ones, eat sleep and poop. Sometimes all at once. And no is something you get used to saying a lot as a parent (and hearing starting as soon as they talk), so there is nothing wrong with resisting the urge to buy something you are pretty sure the baby will never use.

Thursday, March 25, 2010

So, I think this is worthy of a second post today...

I opened my email and got this message from a fed-up friend:

So, apparently, I am now a pariah among my "friends" here (she lives several hundred miles from me now) because I decided to give birth in a hospital with a doctor.

This really annoys me because they know what happend with F's (name abbreviated to protect identity) birth and how the lack of intervention by _______(midwife's name left out) caused the shoulder distocia (sic). One mom told me to forgive and forget. Well, I've forgiven even though my son was put at great risk, but I don't feel comfortable forgetting and I told her so.

See, here's the deal, we are all so quick to criticize doctors and the "sterile hospital setting" and too many interventions, but why don't I hear women coming out like I am about midwives so set on their own version of childbirth they put you and your child at risk. That sometimes the lack of intervention causes serious injury or death!

She went on to apologize for ranting but needed to get it out.

I don't know why more women aren't coming out with stories. Any number of possibilities exist among which are a) they don't want to relive a horrific incident publicly b) there is a low incidence of negative experiences with a midwife assisted birth and c) they may have signed some kind of legal document barring them from doing so. It really does not matter because the point my friend is making is a valid one, there have to be some cases of misconduct so why are they not being aired as publicly as complaints against doctors performing "too many" Cesarean sections or inductions.

I will summarize what happened to my friend (which she has given me permission to do) who we'll call Cate. Cate is in her late 20's and is expecting her second baby. Her first son, who we'll call Fred, is now 2 1/2 years old. Cate was excited to become a mom and had a very specific birth plan. Give birth at home, without drugs and with a midwife. Her two older sisters (who happen to be twins) are both l &d nurses and had been present both for midwife and physician assisted births at the hospital they worked at and thought it was a great idea, provided Cate was getting proper care. They both were on hand at the birth. Cate chose a midwife she liked personally although she felt the woman was a little unorthodox, she was not too much older than Cate and Cate felt sisterly toward her. More like a girlfriend than a health care professional. Cate had asked early on about a back-up physician just as a regular run of the mill type thing. She was a little surprised when her midwife told her that she did not "contract" with one particular physician group, but her patients were more than welcome to consult on their own with a physician. It seemed odd but Cate wasn't concerned. She also did not get any ultrasounds which she found unusual as most of her friends and family who had had midwife births still got at least a viability scan and most got an anatomy scan around 20 weeks. Looking back now, Cate says these should have been red flags, but she was enjoying her pregnancy too much. Disturbing to her older twin sisters was that Cate was told she didn't need a GTT aka the glucose tolerance test. Especially since Cate seemed to be larger than most women at her stage of pregnancy at that point, but the midwife told her that the GTT was overkill by physicians afraid of insurance companies and law suits, that women rarely had it and false positives were common. (Disclaimer here: due to a high dose of antibiotics I was on during my pregnancy with Shelby when I had my GTT my diagnosis of gestational diabetes was, to say the least, questionable but I went along with it to avoid retesting.) Cate went past her due date. 18 days past her due date. Finally she begged the midwife to strip her membranes to bring labor on. Thankfully it worked. And thankfully, her sisters were there when she delivered. Fred turned out to be close to 14 pounds at birth. Cate tore severely and he was so large he got shoulder distocia. And thankfully Cate's sister brought a glucose test meter and found that the baby was going into a diabetic shock. She called 911. Cate had undiagnosed, untreated and rampant gestational diabetes. Perhaps interventions in that way would have prevented such an oversized baby. And even if Fred had turned out to be quite so large anyway a doctor would have been able to assess this with ultrasound and make the call as to whether an induction or c-section was needed.

The midwife, in this case, was stripped of her license in that state and I think is a rare example of recklessness in midwifery. I saw a wonderful midwife for one visit while pregnant with Will. She knew I was high risk and a repeat c-section (I was not originally scheduled to see her, the doctor I was to see got stuck in surgery). She did a more than thorough exam and wrote down everything I told her and apologized the doctor had not been in and assured me she would personally sit down with him and go over my chart and have him call me. He did. She went out of her way to provide excellent care and I highly recommend her to anyone interested in a midwife birth in my area. I shared with her Cate's story and she was outraged. She told me that typically she has to be firm with a mother she is comforting who is finding out that she is high risk and will have to have a physician birth or who needs a c-section. She insists to them that they are still giving birth and that their first act of selflessness as a mother is giving up their "ideal" birth.

I see and hear all the time on birthing and mothering websites about how "dangerous" it is to tell stories in the media of negative things happening in midwife assisted births but I never hear anyone commenting on why it is okay for people to portray physician assisted births as negative. It is clearly a double standard. I understand that midwifes and their patients are immediately on the defensive because they are not the "norm." However, I don't think that gives anyone the right to criticize a woman for choosing a hospital or physician assisted birth nor for having a repeat c-section. This defensive posturing only serves to add fuel to fire against having a home birth or choosing a midwife.

Ricki Lake began her "social network" of Your Best Birth to show women that midwife assisted home birth was the best way to have a baby. I don't disagree that for some women it is and maybe a community should exist for those women. But calling it "your best birth" implies women either choosing to or being forced to consider doing anything else are not having a good birthing experience or are somehow less of a woman or a mother.

I'm all about representing balance. I am at peace with giving birth in a hospital by c-section. But I know a lot of women are not. A co-worker (who has had a vbac) and I were discussing this and she said it disgusted her when she heard women telling someone like me (who has had multiple c-sections) that I had made the wrong decision. "It's not their life, it's yours and you did what was best for you. Why don't people understand that? As badly as I wanted the vbac, if it was in anyway too risky for me, I would have had the repeat. It's not worth risking my or my daughter's lives." I couldn't agree more. But when I hear a woman ranting about her unnecessary c-section, I don't try and convince her of anything. I simply tell her I am sorry she had to go through that and I hope she'll be able to try for the vbac she wants the next time.

We've gotten to a point in our country and society where we don't care what others think to the point that we think that everyone who doesn't think our way is wrong and should be told so. That's just not right, especially in matters of birth, parenting, etc where there is clearly more than one way to do something.

I would not be telling Cate's story today if she had told her friends that she was giving birth in a hospital with a physician if they had, instead of treating her with disgust, told her that as long as she was doing what she believed was right and was best for the baby, they supported her.

Wednesday, March 24, 2010

Sporty Mama

A few years ago at the beginning of the NFL season I watched something incredible. Olivia Manning watched as her sons Peyton and Eli played on Sunday night. Against each other. It was the first time that had ever happened for the brothers Manning. My heart ached for her. And now I think, how did she do it?

Bill Cosby jokes on the dvd "Himself" about how he was so excited to have a son (watching this years after Ennis was tragically killed is bittersweet) so he could teach him how to play ball and all the excitement of seeing him play live and make the big play and when his son gets in front of the camera what does he say? "Hi mom!"

And what mom wouldn't in some way want to be like Debbie Phelps watching her son win a historic number of gold medals and become the most decorated Olympian of all time? But Michael is Debbie Phelps' only son. What about moms like Olivia Manning? Blessed with two strong, healthy, talented boys. Who play the same sport? What happens when one brother's big moment eclipses what could have been the other's?

My boys are 20 months apart. Far enough apart that at young ages they will be on separate teams if they are playing in the same sport. But as they get older and hone in on one sport and are teamed together in other ways, what happens if they go head to head?

You would think I would know how to handle this. After all, I have 3 brothers. Two of whom excelled in the same sport (wrestling). Fortunately, they were different weight classes so they never faced each other.

And Joey and Will are 2 1/2 and 10 months, why am I even worried about this now? I don't know if I ever told you, but my husband's family, is extremely competitive. And my husband was a star pitcher in baseball and a pretty good point guard in basketball despite his size. And his youngest brother was an extremely talented college hockey player. And then there are my brothers who were wrestlers and the other brother who played college football. And my mother's family is full of downhill skiers. You see where this is going. There is plenty of athletic talent (despite my personal deficiencies in that area) to go around and competition too. In fact, Joseph already has the killer instinct in this area. And Will has already shown he's not about to be upstaged by anything those big kids can do.

So, while it doesn't keep me up at night, I wonder sometimes about that day when I may show up to a game that both my sons are playing in. On different sides.

Tuesday, March 23, 2010

Pretty Wild...and Pretty Stupid

Have you seen E!'s new reality show Pretty Wild? It's not for kids. And really not for adults either. Even executive producer Chelsea Handler is somewhat embarrassed of it.

It chronicles the family of one-time Playboy model Andrea Arlington which includes her husband Jerry and her two daughers Alexis Neiers, 18 and Gabby Neiers, 15 and their friend (who is misleadingly referred to as a sister/daughter) model Tess Taylor, 19.

To say this family is a mess does not even begin to describe it. Andrea "home schools" the girls basing her curriculum off the movie The Secret. I will admit, I've only googled the movie, but it seems to fall around the lines of "spirituality, not religion." The family engages in "prayer circles" that always ask for the greatest good and end in the mantra "and so it is." There are statues of Buddha, but I'm not clear what, if any, religion they follow. Tess and Alexis are models and in the first episode win lucrative contracts with Biatta lingerie as the "faces" of the company.

Here's where it gets sticky: Alexis is one of the accused in the Hollywood burglaries and there is video surveillance of her taking items from actor Orlando Bloom's home and when LAPD serves a search warrant of her home a bag belonging to actress Rachel Bilson is found.

Alexis maintains her innocence and states she is guilty only of poor judgment in friends. Unfortunately, as she finds out, just because you're innocent until proven guilty in a court of law does not mean the same is true in the court of public opinion. She is dropped by Biatta just days after signing her contract. Her parents are served complaints for violation of HOA rules as papparazzi stalk the family at home.

While the title of the show is clever as the girls are clearly beautiful and wild in their behavior, I think a more appropriate title is Pretty Stupid.

Let's start with mom Andrea. She readily admits in the first episode that she has never put restrictions on her girls and now thinks that might not have been the correct parenting course. Unfortunately it's a bit late to consider this. In addition, she is clearly of the mind that beautiful people are above the law. It's one thing to be a supportive mother, it's another to think you are more intelligent than the high powered defense attorney that you hired to defend your daughter in court. She seems to have all the right intentions but know nothing of what to do with them.

Then there is Tess who, one has to wonder, must have left something rather terrible to voluntarily join this family. The next episode reveals her biological mother is trying to speak with her, which may open up some of the back-story. She is questioned by police but ultimately let go without charges being filed in connection to the Hollywood burglaries. Is she potentially a less than helpful friend for Alexis to have?

Alexis we've pretty much been over. She is hoping to land the role of a pole dancer in a Mickey Avalon video. Previews for subsequent episodes show her attorney having to tell her she is "grounded." While her "confessional" footage shows her crying, proclaiming her innocence and stating how awful she feels for the celebrities whose homes were burglarized, her actions are telling another story. She has no problems partying, dancing and hitting on guys.

If there is one redeeming character in this saga (and there is only one) it is fifteen-year-old Gabby. It is Gabby who says in the car on the way to the Hollywood police station ,"Everyday it's something with those two." It's Gabby who points out when Alexis waives her right to an attorney that Alexis doesn't know what that means. Gabby is crushed by Alexis's arrest and the ensuing drama which includes moving from the neighborhood she loves where her friends are.

So, why do I care enough to write about this show. For me, I think there is real potential to look down my nose (and trust me, to an extent I do) on this family and people like them. But there is also a real potential to find someone to pray for. These girls have no doubt been damaged by their own misdeeds and a serious lack of parenting, but they can be redeemed. The most obvious potential candidate for a turn-around is Gabby, but who is to say that Alexis and Tess might also be able to turn it around. I was extremely critical of the Kardashian clan but Kourtney is now a responsible business owner and mother and Khloe went from a drunk-driver to a loving, devoted wife who was crushed when she discovered she was not pregnant (or suffered an early miscarriage, it was not specific). And it was obvious that their family ties were strong when they all celebrated the life of former patriarch Robert Kardashian at an Armenian restaurant. Perhaps the Arlington-Neiers-Taylor family can find that the happiness they seek via attention-getting antics can be more easily found through simpler things like running a business or perhaps actually acting like a family. Well, at least I can pray for that.

Monday, March 22, 2010

An Unseen Side Of Autism

I've decided that I will blog once a week about autism so as to keep awareness high and burnout at bay.

Lately, we've been seeing a lot more about autism in the entertainment world. Not only are more athletes and actors sharing their stories of dealing with the disorder, but it is being made into art. I don't watch Grey's Anatomy but am well aware (thanks to my mother and several other rabid fans in my friends and family) of a character in recent seasons who has Asperger's syndrome. I'm asleep when Days of Our Lives comes on, but one of the show's writers has a son with autism and in recent years wrote autism into the show through one of the young children of two characters. But I don't work Saturday nights and so I, starting last week, have been watching Parenthood. You know, the much hyped new series by Ron Howard and Brian Glazer loosely based off the Steve Martin movie? I nearly rolled my eyes when my husband told me there was a character who was "high functioning with asperger's" on the show. I certainly went in with the glazed over look. After all, while it was great to see Hollywood acknowledging autism, it's gotten cliche'. Just as most hip series now have the "token gay character" it seems almost a given that if it's new, and especially if it has kids, there will be a character with some type of developmental delay or behavioral issue.

But that was before I watched this week's episode. Max, the young boy who is high functioning with asperger's, is on the quest for a new school. Well, his parents, Adam and Kristina are. In the last episode they received his diagnosis. While high functioning, Max does not do well in a traditional system and has actually been dismissed from his previous school. Adam and Kristina have found an alternate, a private school called Footpath that they fall in love with despite it's high price tag. They then find out there is not a space for Max in this school until the following fall, too long to wait. Like all good parents, they fight for Max to get an interview. The principal relents. Max goes in for his interview at the conclusion of which, the principal tells them they will make a decision by the next day.

And this is where the story takes a turn I did not expect. As Max exits the interview, he is greeted by his parents and Aunt Sarah (who has brought coffee for the nervous Adam and Kristina) he turns to them and asks, "Did Haddie win her game?" They have missed their teenage daughter's soccer tournament. Not just missed it, they forgot all about it. When they arrive at the soccer field. Haddie is the only one there waiting, with her bag and trophy. She doesn't speak as they family goes to their car.

Later, Adam comes to Haddie's room and apologizes and tells her he knows it's been a rough couple of weeks for her too. Haddie's reply, "weeks, it's been years Dad." She goes onto recount how Max ruined a birthday celebration for her (knocking over a cake because he was scared of the candles) and how she has had to change her life to accomodate his needs. She doesn't yell, she doesn't rant, she just states this to her father whose face changes as he realizes the uncomplaining Haddie has had difficulties he had never taken into account. When Haddie asks if Max got into Footpath, Adam tells her how proud he is of her.

Lately, our family has seemed to be a rarity. We have an autistic child and chose to have more children. While the boys are, thus-far, normally developing, we knew the risks and we took them. When people find out about Shelby and then that we have two more children, their responses range from admiration to mild-outrage. To be honest, I'm offended by both.

We did not decide to have a second and third child to tempt fate or to prove anything to anyone. We wanted Shelby to have siblings. That was it. We knew God was not ready for our family to be complete, so we remained open to life.

On the other hand, it is hard not to feel resentful when someone tells you that you are being a bad parent to your autistic child by having other children who also require your attention and/or unfair to the normally developing children because an autistic child requires so much attention.

I realize that these people are speaking from their own fears and ignorance regarding autism or "special needs" in general. I know that for some families, one child with a developmental delay is all they can handle. We are a bit different in that respect. I also understand that it is easier for people to contemplate having a child with special needs in a larger family when that child is the youngest. It seems to be logical that the older siblings were normally developing, there was no reason to suspect this child would be any different and when he or she was born and was discovered to need more attention, the family simply decided there would be no more children. The big kids help the younger, so there is more support for the parents.

But Shelby is our oldest child. It's very hard for people to understand why we would risk a second child with autism. Much less a third.

Siblings of autistic children--and children with other delays-- don't have it easy, that's for sure. Older or younger, they know their brother or sister is different and not always in ways one wants to be different. And whileit's hard being siblings in a family where everyone is normally developing, a sibling with a delay is a special challenge. It means that other children do sometimes get caught up in the shuffle, even by the most attentive parents, and sometimes have responsibilities thrust on them that they didn't ask for, much less want.

I will be honest, I cried when I heard Haddie's words. I cried at the thought that Joseph or William could one day say the same thing about Shelby. There is no doubt, they will have to make sacrifices for her in their lives that they might not have had to otherwise. I recently had a discussion (okay, an argument) with my mother and Jeff about Shelby's IEP meetings. I loathe the experience as it was so awful the first time we went through it and I found out that people who have had less than an hour with Shelby are ultimately 100% in control of her educational future and I'm basically asked to be there as a formality. I was told at one point during a meeting that as a "good parent" it was my responsibility to do what was recommended by the professionals there and anything other than their recommendations was proof that I was not invested in my child. In other words, if I didn't like what they said, I was a bad parent. These "professionals" (it leaves a really bad taste in my mouth to refer to them as such) fail in a very critical way. They are not assessing Shelby in her family situation, in what an extra hour of the day of lugging her brothers around does to those two children. According to the people in the IEP meeting, I am to be a good parent to Shelby at the expense of my other two children. And that is something I flat out refuse to do.

Shelby is autistic. Shelby is a daughter. Shelby is a sister. Shelby is a member of a family. My hope is that television shows like Parenthood may help shed light on the fact that when psychologists, teachers, therapists and other "professionals" fail to take into account the impact of a child's education/therapy/treatment on his or her family, they fail that child as well. We are Shelby's family, we are not invisible. What impacts her, impacts us as well. And we are not going to be ignored. My sons will not someday come to me and say, Mom, it was really upsetting how you never came to any of our things because you were always finding new therapies for Shelby. And Shelby will never feel that she held her brothers back from anything.

Sunday, March 21, 2010

Slide Mommy, slide

Joey and his father have been playing "slide" lately which means that Daddy first plays horsey with Joey and then Joey "slides" down Daddy's back. Yesterday we went ot the park and rode on the real slides.

This morning, Joey wanted to slide and play horsey. Sundays are Mommy's day to get up early and so I agreed. Big mistake. My back felt off immediately and then when Daddy and Joey went to the store and park, I sat down like normal on my couch to fold clothes and pain shot up my back.

Several hours, one muscle relaxer, ibuprofen and icy hot later, I am slowly feeling a bit better.

What did Mommy learn today? I am NOT a slide!

Thursday, March 18, 2010

Is Autism the new ADD?

My friend Michelle has a "controversial" post about autism and other "ailments" in our era at her blog. I put controversial in quotes because it got me thinking (it did not get my hair up) hard about how we diagnose children.

There is no doubt, and Michelle agrees with me on this, that Shelby is autistic. But, the sudden uptick over the last few years in diagnoses around the world, begs a lot of questions. Is it genetics? Is it contaminents? Is it vaccines? Is it shellfish, gluten, soy? etc (you get the point.)

One question I HAVE NOT heard asked is the rate of misdiagnosis. I won't google or try to look it up on the internet as the internet is notorious for incorrect information.

In the early and mid 1990's there was a "pandemic" of ADD/ADHD diagnoses. Not surprisingly, a lot of the explanation supporting this surge in diagnoses was similar to that we are seeing in autism including: more girls being diagnosed later in life because of a lack of a behavioral element and a broadening of the definitions and symptoms of the disorder. Don't get me wrong, a lot of kids were helped. But a lot were misdiagnosed too.

Around that time I worked part-time after school and on weekends at a pediatrician's office. The parents who would call in demanding their child had ADD/ADHD were astounding. A lot were parents of kids who were getting B's in school and blamed that on the disorder stating they would get all A's if they were treated with medication. (I grew up in the highly competitive area of North Carolina called the Research Triangle Park which includes some of the highest per capita ratings of PhDs in the world. Grades, education were everything. As was entitlement.) Other times I saw what was clearly a lack of parents properly disciplining children and children knowing they could get away with it. One incident that stands out to me was a story another woman who worked in the office told me about one day. She was in horror after finding out that an acquaintance had obtained ritalin (she believed without a prescription) and was giving it, unchecked, to her two-year-old son. I remember (I was sixteen at the time) blurting out, "What! Every two-year-old has ADHD!" While not technically true, it is true that two-year-olds don't have great attention spans and have enormous energy that can be misinterpreted as hyperactivity (I live with one now, I should know).

The doctors I worked for were wonderful and not prescription-writing happy when it came to ADD/ADHD. They required written documentation from people outside of the family (teachers, pastors, etc). And there were very real cases that came in the door. But the enormity of cases that were clearly not valid and the refusal of some parents to believe that their children could be "cured" without a prescription, was incredible. And to me, criminal. That created the illusion that this was not a real disorder one just made up as an excuse for parents to blame something other than parenting and discipline for children's behavior. It made it harder for the kids who really were suffering from not being able to focus on any one thing for a prolonged period of time or who were in constant motion involuntarily.

And there are those out there, call them conspiracy theorists or whatever, who believe that autism is fake as well. I was in shock when a family member recently suggested to me that Shelby didn't speak, "because she doesn't want to." I don't know this person well (family by marriage) and this person had only met Shelby one time, in a situation in which Shelby was clearly very comfortable. But it opened my eyes to the fact that people will not believe Shelby's disorder is real and severely handicapping for her. And it got me thinking hard.

Autism is a very tricky disorder because it is a "spectrum disorder" meaning that symptoms can vary widely and their severity is wide ranging as well. As a friend of ours with an autistic daughter says, "If you've met one child with autism, you've met one child with autism." Meaning it is nearly impossible to generalize with this disorder. That is very difficult to comprehend. One of the reasons I believe that autism is more widely diagnosed now is that many of the people with it may possibly just have been institutionalized in the past with no diagnosis (and no real course of treatment) or misdiagnosed as mentally retarded. That being said, the very real possibility exists that children and adults are misdiagnosed with autism regularly.

We live in an information-rich world fueled by the internet. If I want to know what Britney Spears ate for lunch, I can find out in a couple of clicks. This, obviously, has pluses and minuses. One huge minus, I found out about first hand, is amateur diagnosis. Members of my family, googling and reading anecdotal evidence/testimony had diagnosed Shelby before her official diagnosis. While in the end they were right, they also had strange demands. Among those was that we get Shelby an MRI scan. I nearly lost it when I heard that. They seemed to believe that "the hicks in North Carolina" didn't know what they were doing in diagnosis and that without an MRI we were being cheated. (Little did they know the leading research in the world is being done not in Boston, NYC, LA or New Haven but right here in Chapel Hill at the University of North Carolina.) I kindly informed them that when a health care professional with a degree and experience in this area suggested we go that route, we would entertain the idea, but, until that point, I was not going to put my daughter under sedation to undergo an MRI to appease them.

How many parents out there are amateur diagnosing their children and trying to demand testing and services? How many parents have a child just little bit slower at making their milestones (but making them) who are convinced and telling anyone who will listen they have an autistic child? Not every child who doesn't make friends easily has Asperger's syndrome. Not every child who has sensory stimuli issues is autistic. One of Shelby's former therapists told me that several children she worked with had sensory processing disorder (which Shelby has) but are not autistic. Dr. Nancy Snyderman, a medical expert for NBC news, has said on the Today show that her son suffers from SPD but did not put an autistic label on him giving credibility to the fact that SPD does not equate with autism. Some children talk late, but are not autistic. Some struggle with fine motor skills, you get the picture. However, the "hysteria" created by the media and celebrities touting one issue over another is enough to drive everyone to suspect he or she has autism to some degree. Even I have thought I might have a high-functioning form of the disorder from time to time. We have been taught that knowledge is power and so we read every baby development book, check out cool websites, and bombard our doctors with questions. And we agonize over every last detail. If "the book" says our child should be standing by six months and little Jack is not standing and is seven months, "OMG, something is wrong!" While vigilance is commendable, there needs to be an intense media circus about the "wide range of normal" too.

In addition to possibly overzealous parents, there is a very large problem in our country that we don't appreciate: doctors cannot keep up with the newest information available. Medicine and science are ever changing and evolving and in this advanced age of digital communication, new information is available worldwide in seconds. My husband attended a seminar for parents, caregivers and therapists where at one point a moderator had to stop people because they were constantly griping about how their doctor must not know anything because he or she had not heard about the newest test or treatment. She pointed out to the group that doctors see hundreds of patients in a week combined with the rate at which new information is available it is impossible for your doctor to know or have heard of every option out there. And doctors are overwhelmed with inaccurate parent reporting of incidences. We have to admit there is a lot of room for error to occur which is why very few general practitioners or pediatricians will diagnose a child outright. Most will do what our pediatrician did and refer the child either to a government agency that provides free testing or a psychologist or non-profit group specializing in testing. But some out there are giving out the diagnosis and perhaps not always correctly.

Remember where I am coming from: I am the mother of an autistic child. I don't want to see any child not get tested who should be. I do not want a child to go without the services they need or are entitled to. I have to wonder though if some diagnoses are off the mark for whatever reason. Will my child ultimately suffer if many children are found to be incorrectly diagnosed? Already one major medical insurer in our state is refusing coverage for therapy (speech and occupational) related to autism by labeling it an "educational issue." Our state legislature is passing legislation fighting that and defining autism as a neurological, and therefore, medical condition to ensure coverage, but what will happen to that law if it is found that many diagnoses were given willy-nilly?

So, is autism the new new ADD/ADHD? I don't know. Only time will tell.

Friday, March 12, 2010

What's In a Name? Part 2: What is up with people!

So this week actress Rebecca Gayheart and her husband actor Eric "McSteamy" Dane released the name of their new bundle of joy. Her name is Billie Beatrice Dane. No word on the source but before her birth Dane had told the press that her name was "right down the middle" not exceptionally normal but not way out there either. I happen to agree and I think it's a beautiful name.

But some people don't. A lot of people. But instead of just saying congratulations and smiling, they are voicing their opinions loud and clear about what Gayheart and Dane "should" have named their baby girl. And they feel free to do this because of the internet.

I think the internet has give too many people the right to think they can be rude and when they start being rude here, it spills over into personal interactions. I have been hearing this loudly lately regarding baby names.

While a name someone, anyone chooses, for their child may not be one that you or I pick, we should be gracious when hearing it or reading it. I have heard names that some of my best friends have picked that I hate. That I would NEVER choose in a million years, but the name means something to them or they like it, so I would never think to say anything like "you're going to name your kid that?" Similarly, I don't offer suggestions readily. If someone asks me what I think of a name I'm not fond of, I ask if they are considering it and try to think of some positives. I might tell them that the name doesn't fall in my top 10, but if it's a name they really like they should keep it.

I hated when people would ask me the names we picked out for our kids as we have been known to change our minds and most of my friends and family, are not shy about telling you how they really feel and I'm not having it! I remember on a trip to my family physician while I was pregnant (I had developed a sinus infection) with Shelby, he asked me who my ob was (she had delivered his fourth it turned out) and if we had chosen to find out the sex (NOT what the sex was). When I told him we did not know the sex he smiled and said, "Good for you! It's a great surprise," and then went on to add, "and you know not to tell anyone the names you picked out until AFTER the baby is born and if you can wait till it's on the birth certificate, do it then." I kept to both of those much to the dismay of everyone I knew.

I think that doctor's advice is prudent in regards to the name. Especially if your family and friends are like mine. No one needs to know or have an opinion ahead of time. I realize that people may want to get you a personalized gift, just let them know it will need to be a christening or after the baby is born one. Trust me, the personalized gift thing is a great way for someone to bully you into giving up your name. They don't "need" the name and they certainly don't "need" to give you a personalized gift!

But back to people's rude comments. I am often taken about by comment boxes on the internet and want to ask people if they are only saying these things because it is a celebrity who probably won't read the comment anyway and they can do it under the anonymity of the internet or if they would say these hurtful things to a person they loved's face. Sadly, I don't ask because I know the answer most of the time, is they would.

Tuesday, March 9, 2010

Doctor's Orders?

As a pregnant woman, or mom, do you follow doctor's orders?

This question came up recently when a friend of mine innocently asked if she could have a ham sandwich (she is 14 weeks pregnant). She got over 30 responses. A lot of people told her to eat the sandwich. A few, like me, told her to proceed with caution. One response was "when I was pregnant I asked my midwife about eating deli meats and soft cheese and she asked me if I ever had listeria and I said no and she said well, you probably won't get it now." Interesting.

For me, it's weighing the risk. I recently heard from an old high school friend who told me another classmate of ours lost her baby at 28 weeks from listeria. She had gone to a luncheon, ate two sandwiches with cold cuts. That was it. 24 hours later, she was having contractions, bleeding uncontrollably and there was no heartbeat when she got to the hospital. It's a very hard thing to think about for me. So, I probably would pass on the ham sandwich, but if I was really craving it, what's so wrong about heating it up?

I think the midwife's response to the person above was irresponsible knowing what we know about the effects of listeria on unborn babies. Yeah, I've never had cancer before either, does that mean I probably won't get it now that I'm in my 30's? Perhaps she should have given medically proven advice. I realize that women have been eating cold cuts for years while pregnant and been just fine. My own mother would eat a BMT sub from Subway once a week while pregnant with my brother Ben. And yes, the risk of listeria is small, but do you really want to risk being one of the few who gets it? After all, your midwife isn't responsible if you take her throw caution to the wind attitude and you lose your baby. You put the tainted food in your mouth. Again, what's wrong with throwing it in the microwave?

I see this more and more these days. Led by Jenny McCarthy's war-cry of "I don't need science. My son is my science," people are more willing to put their faith in the anecdotal evidence of their friends than in medical knowledge. I've heard it in relation to the back to sleep campaign for babies, sunscreen wearing for prevention of skin cancer, immunizations effects on autism (please do not post comments on that, I hear/read enough about it with an autistic child), vbac births, and breastfeeding. There are a lot of "doctors don't know what they are talking about" talk going around on the internet, on the television and yes, as in this case, on facebook.

Do I take my doctor's advice? Mostly, yes, but there are times when I stray. For example, the doctor was worried about my son Joseph's iron levels and prescribed a supplement when he was nine months old. I detest vitamins. My iron levels were excellent in all my pregnancies and post-partum because I ate iron rich foods and lots of them. It was hard because I have a blood clotting disorder that prevents me from eating leafy greens, so I piled on the well-done red meat. I decided, with Joey, to increase his iron-rich foods and it worked. No supplement needed. I got the result the doctor was hoping for just not in the way she recommended. And, when I confessed to the doctor, she was thrilled because iron (as are other minerals and vitamins) is best absorbed by the body when it is consumed via food. Our body processes things like beta-carotene in a different way when we get it from a carrot vs a pill. And it processes more.

Everything is a calculated risk. If you choose not to immunize your child, you risk their exposure to things like measles, mumps, rubella and rubeloa (among others) that have the potential to severly handicap or kill your child. If you choose to have a vbac, you risk tearing at the scar, uterine rupture and possibly death. These are things that vary from person to person. Michelle Duggar has given birth 19 times, at least three by c-section, and several vbacs. Does that mean every and all women should do that? Absolutely not, for any number of reasons. I don't disagree with Michelle's choices, they were and are right for her and she seems to me to be an intelligent person who understands the risks involved. She is not adverse to changing the game plan if need be. But some women, like Michelle, might be good candidates for vbacs and multiple ones and multiple births. Others, like me, should never be considered a vbac candidate. I was given a choice with Joseph, I chose conservatively and he was a repeat c-section. As it turned out, my uterus was so thin at the incision, the doctor thought she might have been able to use a gloved finger to open it. My chances for rupture had been greater than 95%. I weighed the risks and I knew we wanted more children and I couldn't risk losing this baby to fulfill a "rite of passage" of natural childbirth.

I can't profess to say that people should or should not follow doctor's orders but here are some things I have decided for myself:
1) I rarely, if ever, ask friends for medical advice. Unless they are medical professionals who have studied the subject in question they are unqualified to give me anything more than anecdotal evidence which likely could mean nothing.
2) I do not google diseases or symptoms. There is too much personal information on the web that could be mistaken for science.
3) I do rely on intuition but not readily if it blatantly flies in the face of science.
4) I pray on decisions. Especially those made that are medical in nature.

Maybe I'm too far out there from the mainstream on all of this, but I'm the type of person who likes when common sense prevails over common conceptions.

Monday, March 8, 2010

Tiny Treasures Tuesday

William- My big boy is 10 months old. He is pulling up to stand more and more often now and prefers standing to sitting. He is just starting to cruise a bit, we'll see if that catches on. He also found another food he likes, black-eyed peas. Daddy made them for me the other night and he tried a few and is hooked! We are still transitioning to whole milk, it's more of a process than with the first two, but we'll get there.

Joseph- "I love you," "I love him," the precious words of a two-year-old to and about his baby brother. I'll just leave you with that thought.

Shelby- Shelby is signing milk more and more at the table in addition to more. She is doing very well in school still. Last Friday was Dr. Suess day at school and she got to wear pajamas. They had special snack and movie time. She really enjoyed the fun, if different day. Shelby is asking for prayers for one of her speech therapists, Sue, who will be having neck and back surgery around the end of this month to correct an injury from an accident last summer. Please pray that God holds Miss Sue and her family in His hands during this difficult time and helps Miss Sue make a full recovery!

Monday, March 1, 2010

Tiny Treasures Tuesday

William-- The baby is growing up. This weekend he started pulling himself up to stand and he is wanting to walk when we hold both hands over his head. He is, officially, into everything now! He is also starting to climb which, as I remember with my first two, is more terrifying than the walking. Next Sunday he will be ten months old and we are starting to slowly wean him off formula. So far, so good.

Joseph-- How do you know you have a sophisticated two-year-old wise beyond his years? He rapidly graduates from Disney Pixar movies to Napoleon Dynamite. Yes, you read that correctly. Joey's new favorite flick is the story of a high school misfit whose best friends are a recent immigrant from Mexico with his heart set on being class president and a girl who worships 80's fashion and produces her own "Glamour Shots." Honestly though, if there was a movie for a more, "mature" audience he would like, this one is not bad. No profanity, nudity, sex or violence. And it shows that sometimes being an oddball works. In other news, Joey's vocabulary is exploding at a record rate and one of his new words: "spatula" (thank you Spongebob!).

Shelby-- Still a gigglefest with this girl. She made us laugh last week when we offered her cauliflower and she carefully picked up the steaming piece off her plate and deposited it on her Daddy's plate. Can't blame her for honesty! She is full of kisses for her teacher, Miss Krysta and her OT Miss Michelle. She is also still sitting on the potty although still no repeat success. As summer comes, we hope to transition her to big girl panties and hope that helps the process a bit.