Wednesday, August 1, 2012

The day Oskar was born

August 1, 2006

This is what I remember about Oskar’s birth.  Not the moment I first see his face, or his first cry. It’s a Dutch doctor slapping me on the stomach. “Get angry!” she yells. Her attempt to get me to push harder. I am too shocked to be angry. Thankfully, My doula Jackie puts a strategically placed needle into my ankle at that very moment, and I push Oskar out before the battle can escalate.

In the U.S., pregnancy and birth are treated both as a miracle and a medical condition. In Holland the attitude is more “ You’re having a baby, get over it.”. After having my first two children in hospitals in San Francisco, I am surprised at this attitude. Especially when it translates into me being thrown out on my extremely sore ass two hours after giving birth. The nurse starts getting antsy about an hour after they finish stitching me up. She keeps asking me if I need to pee yet. Finally, since I’m “ taking so long” she suggests my husband, new baby and I would move into the next room, which is empty but for two hard wooden chairs. She wouldn’t ask, she explains, it’s just that the custodian leaves at 9, and if we don’t leave, she’ll have to clean up the room herself.

Under the pressure of her impatience, I decide to fake pee and soon I am being wheeled down to the lobby of the hospital, baby in my arms and piled into a cab.

I look down at our son as I hold him in my arms in the backseat of the cab.  Although he has received a quick sponge bath, he still has blood caked in his hair. His face is red and bunched from crying. The cab driver, who clearly picks up stunned couples with newborns in their arms in front of the hospital at 10 pm all the time, regales us with tales of his own children’s difficult newborn phase. It is hard to hear him above the screaming, but I note that he recommends celery water and rooiboos tea.  He pulls up in front of our flat and dumps us at the curb where we are greeted by my ebullient Belgian landlord, who yells at random people passing by to come take a look at the new baby. I am also greeted by the 40 steep wooden stairs that lead to our flat. At this particular moment, living on the 4th and 5th floor of a walkup building seems like kind of a bad idea, even considering the view of the park.  Luckily, the ebullient Belgian landlord carries Oskar up while my husband helps me gingerly climb the stairs. The older kids run over to look at their new brother, and within an hour, I am sitting on the sofa eating Dominos pizza. Except for the 10 stitches, the bloody baby and the mental scarring, it is all like nothing ever happened. 

Monday, July 30, 2012

Why we need Obamacare

I heard a story on the radio the other day. It was about a local artist, a singer/songwriter who was having a farewell concert. He and his wife were moving to Norway because he has a pre-existing medical condition and he can’t get medical insurance in the United States. I had never heard of him before, but when they played his music, it was really good and I felt sad that he was leaving.

I have a friend who got laid off recently. He is utterly employable and within two weeks, he had 9 job offers to choose between. His criteria for choosing a new job however, was not based on which company offered him the most money, or which he thought was the best fit. It was based solely on which company had the best insurance coverage for his son, who has cerebral palsy.

I have another friend who would like to start his own company. He’s smart, he’s capable, he has people who believe in his business model. But if he leaves his current job, he loses the group health plan that he and his children are on. And because of a pre-existing condition (a diagnosis of depression 10 years ago) he can’t get private health insurance.

When my husband lost a job a few years ago. I was terrified. Not because I thought we might be homeless, or starve, but because I knew my son Oskar, who has a rare chromosomal disorder was uninsurable unless we had a group health plan through a large company. (Thanks to the provisions of Obamacare already in effect, this is no longer the case. Insurance companies can’t deny children with pre-existing conditions coverage)

There are a lot of people talking about how under Obamacare, health insurance will affect business and economic development. Newsflash. Health insurance already affects business. How can it not affect society when artists have to leave the country, and people don’t start companies because they can’t get insured?

Why should any industry, especially one with such a reputation for greed and profiteering, have this kind of power over people’s lives?

I have to add, I’ve never actually met anyone who didn’t WANT health insurance. I’ve met quite a few people who can’t afford it, or who don’t need it badly enough yet to think it’s worth it, but never anyone who just didn’t want it. Have you?

Wednesday, May 2, 2012

Skinny Kids

In fairy tales, all that is required to fatten up young children is to lure them to your candy house in the woods, lock them in a cage and feed them table scraps.

If only it was that easy in real life. 

Many children with special needs are skinny little dudes. Oskar included. I have had such a hard time getting him to gain weight. The words “ feeding tube” have been mentioned to me before, and while I know they are a godsend to many parents who can’t get their kids to eat and drink enough, I’ve done everything I could to keep him from needing one. And so far, we’ve squeaked by. SQUEAKED. Oskar’s weight and  height run right along the very bottom line of the growth chart, but he’s on it, and the pediatrician who helps me with his diet says that’s okay.

Here are some tricks for fattening your kids up, in case you don’t have a candy house in the woods.

#1 hands-down best fattening tip: Fage Greek Yogurt. Full Fat! Even when Oskie was on the modified Atkins for seizures, this was okay for him to eat. It has tons of protein and 300 calories in just one container. I would just put jam or stevia in there to sweeten it up a little bit and he loved it. Now we’re off dairy, so no more magic bullet, but it was great while it lasted. He gained weight so quickly the pediatrician who watches his growth asked me what I was doing so she could tell her other patients.

#2 Butter and oil. In everything. This seems obvious, but it wasn’t natural to me. Now I add butter (or Earth Balance if you are non-dairy) to his oatmeal, his applesauce, his smoothies in the am. Anywhere I can think of that it would taste okay. I add olive oil to all his savory foods. 1 tablespoon of melted Earth Balance has 100 calories.

#3 Neocate Nutra. This is something my aunt, who is a nutritionist at Childrens’ Hospital in St Paul told me about. It’s a powder that you mix in with pureed foods or liquids that doesn’t add bulk, but adds calories. 175 calories per serving. I used this for about a year, but it’s a little bit expensive ( 35$ a can) so I just lean on the butter hard

#4. If you use store bought babyfood, pick the highest calorie kinds. Then add stuff. Have you ever looked at those babyfood labels? The fruits and vegetables have, like 20 calories in them.

What else can you think of that’s fattening? Make it a hobby. Peanut butter or sun nut butter and applesauce are a great snack. Cook Oatmeal or Cream of Rice in milk instead of water. One of the super fattening breakfasts I make for Oskar that is delicious is Cream of Wheat cooked in almond milk, then I add Earth Balance, protein powder, a banana, strawberries and some coconut yogurt. It adds up to about 500 calories and he loves it.

It’s really too bad Oskar doesn’t like Cinnabon. My problems would be solved. 

Monday, April 23, 2012

Is your sunblock worse for you than the sun?

When I was a kid, nobody wore sunblock. In fact, we put baby oil on to get tan faster. Every once in a while some dork would wear zinc oxide on his nose and we would all have a laugh. I spent my summers peeling skin off the tip of my nose and counting freckles.

When I was about 12, this stuff came out called “Pre-Sun” that blocked the sun’s burning rays. It was alcohol-based and it stung like… well… it stung like alcohol on a sunburned face. I remember screaming and crying at the base of the mountain in Squaw when my parents pinned me down and slapped it on my reddened nose and cheeks.

Things have changed. My kids look like porcelain dolls all summer long. They freak out if they get the slightest bit pink. They ask for sunblock. Sunblock is good, right? Slather it on! The more the better….

But could it be that what’s in your favorite sunblock is actually worse for you than the sun?

Something like 60% of sunblocks on the market contain a hormone disruptor which some experts warn “ should not be applied to large areas of the skin”. Others contain Vitamin A, which is an additive that can actually accelerate the growth of skin tumors and lesions.

Thankfully, the Environmental Working Group puts out a yearly list of sunscreens that are not actually toxic. Most of them are mineral based. Looks like those zinc-oxide dorks were on to something.

They also publish a “Hall of shame” list. This year, the first four on the “most toxic” list are all marketed specifically towards babies. Including “ Waterbabies” that cute pink bottle with the Coppertone girl in pigtails and the playful little dog yanking on her undies. Who hasn’t had a bottle of that in their diaper bag at some point?

No one wants to slather their children in hormone disruptors, but for kids with special needs, who are sometimes bad detoxifiers, it could be is even more harmful.

So last summer, I printed out the EWG list and went to Whole foods and sat on the floor with the tester bottles and picked one that I liked.  Some of the mineral-based sunblocks can be kind of pasty and hard to put on squirmy little kids. So I went through them all until I found one I liked. If you want to switch your sunblock, but don't want to go through all that or, if you want to order online, the brand I chose was California Baby. 

Here are the links to the EWG website:

Top sunblocks:

And the infamous “Hall of shame”:

Thursday, March 22, 2012

It's Not My Fault

I will admit that I don’t know much about the Buddhist notion of Karma.  My superficial understanding is that it has something to do with payback. And when I found out that Oskar had a chromosomal deletion, I felt like it was Karma.

The doctors assured me that I couldn’t have caused the deletion by eating or drinking the wrong thing. The problem had probably occurred at conception. Some flukey thing that no one could have caused, stopped or predicted.

So I looked deeper. Maybe I was being punished for being ambivalent about having a third child. Maybe it was retribution for something I did in a past life. Or something mean I said in high school. Clearly, it was my fault somehow, on some level. A Karmic level.

When I told my therapist this ( I’m from California, of course I have a therapist!) she sent me to a psychic she knew and trusted. She explained that she did not usually send her patients to a psychic, but she knew that as many times as she told me it wasn’t my fault, I was never going to believe her.

The psychic told me that Oskar had been in an accident in his most recent past life. Paralyzed from the neck down. With a breathing tube. He had been very angry and unhappy, and had left that body as soon as he could. She told me that when he reached the astral plane, instead of processing his life and his anger, he has basically “ jumped the line” and jumped into a new body as soon as he could get one. The universe had put him in another imperfect body so that he could learn the lessons he has refused to learn in the previous life.

Ok, so you can laugh at that story, or believe it or whatever you want, but here’s the moral. Here is what I came away with.

We all have our own Karma. We are all here on our own journey, to learn our own lessons. Oskar’s life is HIS journey. Who knows what he can do, or achieve, or learn in this life? For me to think that his challenges are all about me is an amazing bit of narcissism. My life is affected by him, for sure. He has changed the way I see the world. But for me to insist on believing that his whole existence is some kind of lesson for me belittles his importance to the universe.

And that it how I came to believe that it is not my fault.

Weird side note: Oskar was born with what looks like a tracheotomy scar on his neck. Like the kind of scar that would be left by say, a breathing tube. Doctors ask about it all the time. No idea where it came from.

SFX: spooky music. 

Thursday, March 8, 2012

A Communication Device We Can All Afford. Paper.

Oskar is non-verbal. This is fancy medical language that means he doesn’t talk. At least not yet. It’s hard to know exactly how much he understands, but I really do think he understands words like “bath” and “hungry” and “Sesame Street”. I lose him when I discuss the finer points of politics, but with what’s going on right now in this country, do any of us really get it?

About a year and a half ago, we got Oskar an I pad so that we could try some communication apps.  I found a good, simple, inexpensive app called icomm (I think it was $9.99). You can download your own pictures and voice and it gives the user a choice of either two or four objects. When you touch the object you want, it expands to fit the screen. Pretty cool, but with Oskar’s motor planning issues, even touching the screen in the right place is challenging.

So we have gone low tech. At school, they started using pictures of toys he liked and seeing if he would use eye gaze to choose the preferred toy. That kind or worked, but since he was picking between two things he liked, it was hard to be sure he was really showing a preference. So they started showing him pictures of a thing he liked next to a picture of something boring, like a sock, just to check.

The verdict: He prefers toys to socks.  

We have also been using pictures like this at home. Pictures of his drinking cup, a bowl of food, toys he likes. It kind of worked. I think the objects are a little bit abstract for him though. So this week we decided to take pictures of him with the object. Oskar drinking out of a cup. Oskar taking a bath. Oskar playing with his Ipad. We printed them out and bought a cheap laminator at Target and it’s really working. Now we can show him what we are going to do next, like take a bath, or get on the bus, and he can tell us what he wants. He can look at the pictures of his highchair or his special tomato chair and choose where he wants to sit. He can tell me if he wants to watch Elmo or Bunnytown. He can pick between peek-a –boo barn or the Smule piano app. The other day he even told us he wanted a nap by gazing at a picture of himself in bed.

Master of his own destiny!! A little bit, at least.

I am hopeful that someday he will be able to use something a little more high tech, but this feels like a good place to start.

Sunday, March 4, 2012

The Guilt

The Guilt

One of the hardest parts of being a parent of a child with special needs is the guilt that you are not doing enough to help your child.

If you are doing a dairy-free diet, there is always someone doing a dairy free, casein-free diet. If you are doing 3 days of physical therapy a week, the lady next to you is doing 5 days a week, and 6 hours at home. There is always someone who knows way more than you about diet, and supplements, equipment or funding.

There is always, always the feeling that there is more to know than any human can possibly learn. And that if you were just doing it right, your child would be better off.

At least that’s the way I feel, and I think I do a lot.

One of my fears about writing this blog is that I will somehow add to that feeling for some person. That they will read something and feel guilty for not acting on it right away, or that they didn’t already know it. That is not my intention.

I just learned to meditate, and in my class, my teacher explained that in the Vedic tradition of meditation, the mantra we say is meant to be like a seed. A Bija. It is not meant to take over your thoughts, but to gently rest in the back of your mind.

That is what I would like this blog to be for people. A seed. I would like for people to read it, and maybe act on it, or maybe 5 years from now, when they are ready, they remember something I mentioned and act on it. This blog is here forever, as far as I know, and is meant to be a resource.

If a year from now something I said resonates with you, you can come back and read it again.