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June 21, 2008

I know, I'm a Terrible, Horrible, No-Good, Very Bad Blogger

It's just that I've been.....

Cleaning.

Don't you wish it was something more exciting? Me, too. But what can you blog about when your day is filled with antibacterial soap and chorhexidine baths? Yeah, not much.

So, we cleaned and we shoved Bactroban up our noses and we decontaminated ourselves and D got up early (3:30 am) on Tuesday to go to the hospital and have surgery. You know, that surgery that was supposed to be the end of the whole Infusion Pump Debacle of '08? And he went to the hospital and checked into pre-op and they got an IV started and the OR was booked for 4 hours and three surgeons were scheduled (and a fourth infectious disease dude to consult on hand) and....

He was home by noon. No pump. No surgery, No finish line. He has a bladder infection. Two more weeks of IV antibiotics. And then they schedule the surgery again and we do all of the above cleaning, decontaminating and antibiotic-ing again.

What is most frustrating, of course, is that this is another thing that is more medical administrative related than health related. It has been about a month since D was off the last round of antibiotics. There was a three or four week window of opportunity where they could have gone in there when he was infection free, but they couldn't get their asses together to schedule it then. D told them back then that another infection would come, and if they didn't do things quick, they would miss the window. They missed the window.

Not only that, the UA that showed D's UTI was done the prior Wednesday. D didn't find out till Monday that he had a bladder infection. He had an appointment with the pain management surgery that day, and told him about it. He also told the neurosurgeon and faxed the pathology report to infectious disease. No one did anything. Then on Tuesday, they made us all get ready and get up early and all that and drag him there and then they finally got it together and were like, "oh, I guess you have a bladder infection." Surgery canceled.

Then one of the doctors said something that D doesn't care about but pisses me the fuck off. He said that they were really embarrassed and had mud on their faces about it because they had scheduled the OR and the OR staff and had messed up everyone's schedule at the hospital.

Yeah. Well, Waaah, fucking, waaaah. I'm sorry you'll be a little embarrassed at your next staff meeting and maybe get tsk, tsked by your OR administrator or whoever. But D has to go for at LEAST TWO MORE WEEKS with a PICC line (a new one because they took the old one out last time), spasms, pain, infection, antibiotics, home health scheduling fiascos, an inability to drive, and the whole taking so many extra drugs orally that he is spaced out half the time. And I have to go for two more weeks decontaminating everyone and having my skin dry out and fall off from chlorhexidine and having my nose run from batraban and, well, we are just a LEEEEETLE inconvenienced by this.

Not to mention that I'm planning (still) to go to that family retreat with the kids over the fourth of July and this surgery will put us right about there. Not to mention that no one wants to have surgery or be in the hospital the first weeks of July because that is when all the new people and interns start. Not to mention that they said the pump would have to out for two months and now we've gone over six. But, that's okay. I'm sure sorry that you had to cancel your OR today. Hell, maybe now everyone can take an nice extra long lunch hour.

</rant>

Not much else is happening, here. I do owe some of you some emails and I do have some posts written in my head. So I'll try to get back into the swing of things. I have another little "project" that I'm working on for August, but best estimates are that it has about a 30% success rate. So if that pans out, I'll let you know. I should know in the next couple of weeks.

The only other update I have is on the ever-so-exciting Potty training front. I think I previously reported that Naim is all the way daytime potty trained. And with few exceptions that remains successful. And Aaron? Well I will say we have made definite progress. He is at the stage where if I leave him naked, he goes in the potty chair pretty much 100% of the time. Put any clothes on him and it all goes to crap. But, Naim was here once, too and we got through it. I figure if they do the naked pottying long enough, those muscle memory habits will kick in eventually and they will think about it when they are clothed. Right? Right? He IS making progress.

And the only other thing I have to say about that is that I've had so many discussions with those boys about penises that I could really go with never seeing another penis for as long as I live. (At least the three-year-old variety. Ah-hem.) Gems from today:

"Mama? Do you have a scrotum?"

"Mama, when I get bigger will my penis go away like yours did?"
"No, your penis will just get bigger, too."
"NOOOOO! I don't WANT a bigger penis! I want a LITTLE penis!"

When sitting in stroller riding down the street, whips out penis for no discernable reason.
"Naim, you need to put your penis away. That's private and we don't do that outside."
"Okay, I'll wait till we go in the store."

....PLEEEEEAAAAASE make it stop! When does it stop? At four? At four does it stop? Tell me they will be all potty trained and not penis obsessed by four. Please?!?

April 22, 2008

Disability Awareness

*Scene: Naim and Aaron looking out the front window, waiting for our friend, K, to arrive. Light rail train goes by.

A: The train! The Train! Is she coming, now, mama? Is she coming?

Me: No, she's not coming on the train, she's coming in her car.

N: She drive her car?

Me: Yes, she is driving her car here.

N: K need a car, and Grampa Fred need a car, and J need a car.

A: (solemnly, in serious explanation tone) Yeah. They need a car to move. They have to have a car to move.

N: (Nods empathetically) Yeah. They can't ride the bu-US, or ride the tra-AIN, or walk on the sideWALK like we can.

A: (also empathetic) Yeah. They do it a different way.

N: Yeah. They need to drive their car. Then they can't go to the playground on the way to daddy's house.

*Please excuse my complete inability to accurately recreate toddler talk. Trust me, it was cuter when they said it.

March 08, 2008

As Promised, Aaron's Video

Here is the video I took of Aaron last week. He slept all day that day, and so I had to make 2 lunches, which ended up being PB&J, which is why they were both so keen on sandwiches. (Really, I don't feed them PB&J every day of their lives.)
What is interesting about these tapes is that when I watch them I see what I didn't hear and missed. For example, in the beginning of this, Aaron is telling me to "crack" the camera. He means click it and take a picture, which is what he is used to. Later he asks, "Where'd Abbey go?" when I asked him what his favorite toy was and I missed that altogether. It makes me wonder how much of their communication I miss day-to-day. On the one hand, I was distracted by the camera, Naim running up and down the room at top speed, and my dad was in the kitchen being generally annoying around that time. On the other hand, if I miss this much on a daily basis, that must be frustrating for them. But I guess it will only teach them to enunciate more and be clearer, or use more sign. And that might be good. Although Naim is fairly patient with me when I don't hear or see something, Aaron generally acts like I'm a flaming idiot. But I guess I better get used to that.


Aaron 2/29/08 from Lisa Ferris on Vimeo.

October 31, 2007

When Parenting Makes You Feel Like An Idiot (Case #893)

In my life as a "professional," whether it was as a teacher, child life consultant, behavioral specialist, special ed diagnostician--whatever, I sat in numerous meetings with parents who were struggling with some aspect of their child's life, and I gave my "expert opinion" on what they should do about it.

I was an idiot.

I mean, not totally. I was sincere in my attempts to help. My advice was sound, based on everything I could know at the time. I had empathy for the families and tried very hard not to judge. I really wanted to help guide them to a solution, and many times, they told me that I did help them. So, I was not an intentional idiot, but an idiot all the same.

Once, when I was probably 20 or so, I had a practicum teacher who was telling me the story of how she came to adopt her son. And I remember her saying, "Don't think that just because you are a good teacher, you will be a good parent. Teaching skills come in handy, but it is a whole different ballgame." Sure, I thought. Whatever. She was a good mom. What was she talking about?

Its this: You can know all the behavior strategies in the world, have all the instructional skill sets, know educational psychology inside and out, be an expert in child development, and still not be able to pull all that knowledge together 24 hours a day 7 days a week 365 days a year while also doing your paying job, the housework, the laundry, the cooking, the finances, the transportation, and (if you are lucky) the social life. Life will break you down. Fatigue, exhaustion, just the never endingness of it will turn all of your best intentions into a crumbling pile of crappy parenting.

So often, after the parents would leave these meetings, we would sit around and judge them. Why didn't they implement the thing we told them to do at the last meeting? Why did they protest so hard about the thing we said they needed to do for their kid? Why did they sit through the whole meeting saying nothing and looking like the only thing on their minds was how fast they could bolt to the nearest drinking establishment. Oh, and their problems, how we commiserated over their problems. They were poor, uneducated, divorced, and provided no structure for the kid. Or they were rich, overeducated and arrogant, divorced, and too rigid with the kid.

Now to be fair to myself, I was always on the parents side much more than the vast majority of my colleagues. I would put my foot down when they would suggest mandatory Ritalin or complete segregation. I would defend the parents often. I would try my best to present myself as perhaps a person who knows a lot of strategies in general, but they were the expert on their kid so we were a team who needed each other to make things work. But I admit not fully understanding some of the resistance, and always in the back of my mind thinking, well if it were MY kid, I could pull this off.

Back then, I thought when I had kids I would be married with (I imagined) a nondisabled partner and we would have just one household to manage instead of two and we would start with just one kid and he would help with exactly 50% of the housework and childrearing and we would both be professionals with modest but comfortable incomes and the white picket fence and yadda all the way. The truth is, no one (or very few people) really ever have that. And if they do, perhaps they struggle with other challenges that impede on them reaching their potential as the perfect parent.

I am having to deal with my own limits. The skills and knowledge and intentions I have in my head and heart are limited by what I can physically and mentally accomplish in any given day. After spending essentially 15 years as a single person, I realize how much of that single life was unproductive, or at least how much time and energy there was to spare. SO GODDAMNED MUCH and so little responsibility it makes me laugh at its absurdity. That whole annoying phrase I used to hear when I worked with families, "Oh, you don't have kids? Well, no offense but you just DON'T know." That used to bug the hell out of me. I cared! I knew! What I didn't experience I could empathize with!

I didn't know. Not really.

Its the day in/day out of it. It has been over a year(??) since I have had a babysitter. I've had a bit of childcare here and there, but usually when I am at meetings for church or otherwise obligated. That whole "me time" shit? None. Zippo. Nada. It is the 24 hour-ness of it. It can make you a bit batty.

My sister and I used to laugh at these stay at home moms who would call their husbands up at work to come rescue them because the kids were driving them nuts or whatever. Although I do still think sometimes people can go overboard in not being able to solve a problem by themselves (a coworker's wife called her husband to fill the kiddie pool up because she couldn't figure out how to do it??? That one was a stretch for me), but I understand it more now. Especially when woman (both outside the home and SAH moms) are working 16 hour days when their husbands are pulling in way less hours, getting paid better for it, and are the only ones considered to be truly "working a real job". Yeah, every once in a while, that husband needs to get his ass home and help out. Every stay at home parent needs and deserves to be rescued now and again.

I need to be rescued. And there is no one. I'm having a mental block (or maybe just physical exhaustion of sorts) about Aaron. Maybe yous all can give me some assvice. A virtual rescue if you will. (Or at least a "there, there" would be nice, too.) Aaron and I have been having an issue for the last couple of months. And I think I may throw him out the window any day now.

Since Aaron has graduated from crib to "big boy bed" which happened around August, he has become a monster of destruction. The weird thing is, he could get in and out of his crib for months before that, and often did, but never did he whirl through my house in tornado fashion as he does now.

When I am in the room, he is a perfectly appropriate, average little kid. Yes, he clutters his toys around as two year olds do, but he plays with his puzzles like kids are supposed to play with puzzles. He builds with his blocks. He colors with his crayons--keeping the marks on the paper a good 95% of the time. He takes one or two books and looks through them or brings them to me. All things you expect from a two year old.

When I am not in the room, even for a few minutes, he destroys things. He pulls all the books out of the shelf, he rips pages, he yanks pictures off the wall. He pulls the pillow cases of the pillows. Tears the toilet paper up and decorates my bathroom with tampons. He takes tubs of blocks and throws them across the room, he throws puzzle pieces out of their puzzles at breakneck speed. He pulls every bit of clothing out of the dresser drawers. He pulls lamps down from the plug-ins and breaks them. He hurls furniture across the room. And god save us all if he gets to the kitchen. He will (within seconds) throw a whole box of crackers all over the couch and stomp on them until tiny crumbs are everywhere. He will take sippy cups half filled with juice and flings them around and becomes his own sprinkler system. You get the idea. He does this every. single. day. Sometimes several times a day.

I am with that kid nearly nonstop. But I have to work on the computer sometimes. I have to play with Naim sometimes. I have to fold the laundry sometimes. I have to pee sometimes. I have to sleep sometimes. I cannot physically watch that kid every waking moment. Now, just to eliminate some of the obvious suggestions, here is what I have tried:

I don't think this is separation anxiety. My guide dog, Mara, was with me 24/7 for the first probably 10 years I had her. Then when her health started declining, she stayed home more and more. She went nuts. She would get into the trash and tear everything up into itty bitty pieces. I don't think this is that. Why? Because I am not barring him from being with me. If he wants to follow me around everywhere, he can. And he purposefully makes sure I am not around. He figured out I could hear him on the baby monitor, so he very quietly unplugged it every morning. When they wake up in the morning, they are free to come into my room and get me. Naim comes in every morning and gets into bed with me and wakes me up. I have seen Aaron come into my room, turn on the light, see that I was sleeping (so he thought) turn off the light, shut the door (which I never shut) and run off on his merry way to destroy things. He looks for opportunities to do this when I'm not available. So I don't think that it is that.

My healthy start teacher suggested that I put things up high and babyproof. I about slapped her. She was trying to help but it was probably exactly the kind of stuff I used to say to parents that was no help and lacked a complete understanding of the situation. You can only put so much stuff up high. Up high now is around 5 feet and above. I have reserved "up high" for all the things that could kill him. Toxins, knives, medication, etc. As for baby proofing, he is at the age where he can figure out a lot of the baby proofing stuff. He knows how to unlock the kitchen cabinet baby proofing thingies. He can climb over the baby gates. Besides, it is just a matter of deciding which kind of mess you want to clean up. If I bar him in his room, it is a laundry/clothing disaster. If I allow him access to downstairs, their room and the bathroom may be spared but it is a kitchen disaster. I have ordered some new baby-proofing things for the kitchen, which may or may not work. But the worst is the kitchen, so if I could eliminate that, that would help significantly. But unless I am going to put him in a padded room, baby-proofing will only go so far.

I've tried tiring him out with activity. In the last week he has gone to the farm twice to pick pumpkins, has gone to two Halloween parties, gone to the gym to take his little gym class and then daycare two or three times, countless trips to the playground and dad's house, lots of arts and crafts and games at home, even a trip to office depot where I let him climb all over the office furniture for a good 45 minutes. It does tire him out and he falls right asleep for nap and bedtime. But I can't tell you how fast he can destroy things. I was in my room this afternoon and I heard them get up. By the time I got up and walked down the hall, he had torn the new growth chart I got them off the wall.

Good ole, natural consequences? I have tried to make him clean up the mess. (Naim usually does most of the helping voluntarily because he thinks cleaning is fun. I almost am going to turn this whole matter over to Naim.) He pouts and refuses to help, so then I have him sit until I finish it. Part of this is my fault. There are times when I don't have the time or the energy to deal with this stuff right away. Some days we just have to get out of the house to catch a bus. Or, I'm just exhausted at the everyday relentlessness of it and I sorta can't deal with it and give up until later. I'm still working on this one. I've talked to him about it out the ass. How it makes me feel, blah blah blah. How it is wasteful. How the more I have to clean the less I have time to play with him. He is too young for much of this. Maybe there is some behavior pattern that I am missing here because I am too close to think objectively. Maybe I am positively reinforcing this with attention or something. If I am, I'm not really seeing it.

Also, to clarify, anyone will tell you that I am not a neat freak. I am not really bothered by the toy clutter. I expect that. And I know that sometimes kids will play rough and things will break. But it is the CONSTANT destroying of things. Some messes you can just let go, but when there is cracker crumbs smashed in the bed or milk all over the floor (if I leave the table for even a second to go get something from the kitchen) you just have to clean it up and deal with it. And when you have a major mess several times a day, it drives you a little--um, a LOT, BATSHIT INSANE.

So, if you are going to tell me that he is a boy and this is what boys do, I don't care. I can't live like this. If he is biologically wired to destroy things, then he needs to learn to control his biological tendencies. I don't do well at all in any circumstances with the "boys will be boys" excuse. I think accepting much of this boys will be boys behavior is a load of crap. I can deal with high energy boys and their trucks and cars and spaceships and need to climb on everything and hang upside down. I cannot deal with wastefulness, needless destruction and totally making my life a living hell.

Aaron is a good kid. He is funny and smart and I love talking to him and listening to his stories and pretending with him and bouncing him around and watching him play. In general, Aaron is a joy to be around. But we have gotten ourselves into a downward spiral. The more he destroys, the more I have to take time out to be away from him and get other work done. The more I am away from him, the more he destroys. The more he destroys, the more I feel like a helpless single mom with no backup that needs to call up, well, somebody's husband at work and have them come home and rescue me.

There is just no one to call.

Someone at least just tell me this is a (very short) phase and that your own son or daughter went through this and moved out of it in less time than it took you to have to check yourself in to a mental hospital.

And for any mom out there who I sat across the table from with my small case of smug professional expert disease and couldn't understand why you couldn't follow my extremely detailed behavior plan consistently 24 hours a day, I apologize. I was an idiot. And I always try very hard to learn from my idiot mistakes. Okay Internets, help me learn from whatever idiot mistake I'm making now.

October_017 My energetic (top right)...

October_022 ...joyful...

October_032 ...intelligent...

October_009...loving...

October_037...imaginative...

October_039...independent...

October_025...agonizing angelic second-born child.

October 23, 2007

Aaron (who is trying my every last friggin' nerve but in a funny way.)

While at Petsmart, after we had visited the fish, birds, cats, dog obedience class, and various rodents:

A: Where are the dinosaurs?

Me: They don't have dinosaurs here.

A: I want to see the dinosaurs!! WHERE ARE THE DINOSAURS!!!!

Me: There are no dinosaurs here, we'll have to wait till we get home and you can play wi--

A: (big, sobbing nasaly whine) Whyyyyyyyyyyyyyyyy? Whyyyyyy don't they have any diiiiinosaaaaaauuuuurs?

Me: Because they are extinct. They don't live on earth anymore, they were only alive a long, long time ago.

A: NO! No dinosaurs extiiiiinct! I don't LIIIIIIKE it when dinosaurs extinct! Maaamaaa! Make the dinosaurs not extinct RIGHT NOW!

Me: (desparately count the minutes until naptime.)

September 25, 2007

All Cats Go To....??

Conversation #1: (every time my dad leaves town.)

Aaron: Where'd Grampa Fred go?

Me: (Big signing hand gestures and drama). He took the train to the airport...

...and got on an airplane...

...and flew up in the sky...

...and flew all the way back to Kansas!

Conversation #2:

Aaron: Where'd Scrapper go?

Me: Scrapper died and went away to Heaven* like Grandma Diane and Mara did. We will miss her, won't we?

Conversation #3: (With the storybook lady at the Children's Museum who just finished a book about cats.)

Storybook lady: Does anyone here have a cat at home?

Aaron: I have a Kai and a Scrapper at home.

SL: You do? You have two kitty-cats?

Aaron: Scrapper died and went to the airplane up in the sky to Kansas!

SL: Scrapper went where?

Aaron: (irritated by having to repeat himself says annoyingly loud) Scrapper DIED! Scrapper in KANSAS! We will MISS HER!!!

Me: He's getting a couple different stories confused, there.

SL: Oh! Thank goodness. I'd hate to think that when we die we go to Kansas.

Me: Amen to that.

*Yeah, UUs, I know. What would you say to a two-year-old? Its just a concrete word for now, they can decide what it means to themselves as they get older.

August 17, 2007

I Have Children!

Just in case you'd forgotten that I have kids that say and do fun things, because I have been turning this blog into the Summer of Bitchin' n Moanin'. I thought it is about time to write about them.

July2007_010 Aaron sitting in the outdoor seating area at Noodles, with really short hair.

My dad finally talked me into getting the kids' haircuts by a real person who knows how to cut hair. So these two pics of them are right after their haircuts. It cost $7 each, they cried the whole time (less than ten minutes is all it took), and then we took them to "Noodles" afterwords to help turn their day around. They really like the mac and cheese they have there, so for them it is a treat.

Aaron's language is ab fab. We have whole conversations now. He is starting to be able to talk about what happened in the recent past, instead of just commenting on the present. One day he wanted me to draw a truck on the magnadoodle. Then he didn't like the semi I drew. I was supposed to draw a truck like Grampa Bob has. So I start over and draw a pickup truck. Then he wants me to draw a tree in the back. Two WEEKS before this, Grampa Bob drove by us as we were walking by the park. He pulled over and talked to us a minute and he had a big tree limb in the truck that had fallen in a storm or something. So, I had to draw a tree in the truck. And then he wanted Grampa in the truck. And then he wanted me to color it GREEN! Mama! Which is the accurate color, but impossible to do on a magnadoodle. So I just shaded it in and he was satisfied.

Then we had a babysitter the other night. When I got home I asked them what they did with the babysitter and I got no response. Then, the next day out of nowhere he says, "Mama, Audry played with cars and trucks with Aaron last night." Woah! "Last Night?" Thats a whole abstract time-y concept type thing. So now I can start to know what it is that they do all those hours in childcare.

Aaron's imagination is crazy wild. He has been carrying around the plastic part of the mobile from the pack n plays that the actual mobile hangs on. He takes it everywhere because it is his dinosaur. He took two plastic bibs today and flew them around the house and said they were the wings of his bird. We have the two pack and play cribs right next to each other with about a foot of space between them. He gets in between them with an arm in each one and says he is a butterfly. He lines up books or boxes or whatever he can find to make all sorts of trains. I can just put my feet up on an ottoman with several inches in between it and me and I turn into everything from a bridge to a tunnel to a tent to a house to a boat. He has elaborate stories that go along with all of his things that he constructs. I can't follow them half the time, but they are funny to listen to.

He has been driving me nuts doing the "What's that one?" thing all day long. All that vocabulary building that requires me to name everything. And he gets really technical about it. He says, "What's that one?" while pointing to a tonka truck and I say it is a truck. WRONG! He meant, "What is that thing that sticks up out of the cab called ?" or "What is the little screw that holds the dump truck to the frame called?" Well, kid? I don't have the slightest clue what that is. I start making stuff up. "Its a gizmo that holds the thingy to the whatchamacallit." Once he was driving me nuts by asking me what every little itty bitty part on the stroller. He pointed to some little part or something and "What's That One-ed" it and I said, "Aaron, you're making my head hurt." And so he pointed to it and said, "It's the making my head hurt." And so it is.

Aaron likes to sit and read and do worksheets and color. He likes to draw on the magnadoodle. He has a name for everyone of his scribbles. Its a bird! Its a truck! He actually does draw a pretty good planet. It has rings like Saturn. He likes to tell me all the time, even during broad daylight, that he sees the sun, the moon, the stars and the planets. "Look, Mama! There's a PLA-NET! RIGHT THERE!" Okay, sure, if you say so. Aaron is word man.

People have asked me if they have any sort of reaction to our disabilities yet. I think Aaron is starting to notice things a little. For me, I think he just is starting to realize that he is smarter than me. He will hear my dad coming home when the garage door opens. Something I can't hear. And he will say, "Grampa Fred!" And I will say, "Grampa Fred went bye-bye. He'll be back later." And he will just look at me like I'm a moron and say, "Grampa Fred is in the garage, mama!" I just have figured out that the kid is never wrong about anything and go with it.

One day, D and I took them to a park and they were climbing on these big cement risers while D was parked under a tree below. Finally, I had to tell them to come down and Aaron didn't want to go. I said, "we have to go down and see daddy now. Remember, we have to stay together." Stay Together is our gospel rule when we are out. Aaron said, "Daddy come up here. Daddy stay together up here." And I told him that he can't come up here because he can't climb the steps in his wheelchair so we have to go down to where he is. He gave me this long look like he was deep in thought about that. And then he said, "Let's go see Daddy and Nyman (Naim)." Problem solved.

July2007_011 Naim after his haircut at Noodles restaurant.

I don't know if Naim really notices disability that much yet. If he does, it is only that he thinks all the disability accouterments are his personal playthings and families that don't have parents who are disabled must be awfully boring. Naim loves to ride on D's wheelchair, loves to push the little horn button it has, loves to ride up and down in the tilt-n-space. He likes to walk around with my cane, and when I use it he likes to walk in front of me and hold it underneath where I'm holding it and tap along with me. He likes my talking calculator and abacus and the Braille in the "Twin Vision" books. He always wants to push the buttons on the van that make the ramp go up and down. Then at home when he plays with his little fisher price school bus, he has all the people get on and off using the back door 'ramp'. He opens and closes it very slowly like D's van ramp does. He has the van sound effects down for that as well. On my mornings when we go over and help D, he always wants to be in charge of the foot stuff. D has a boot that protects the bandage on his real foot that Naim likes to give him and fasten the velcro on, and then he likes to bring D his prosthetic foot. I'm going to have to take a picture of that sometime. The prosthetic foot goes up to D's knee, so it is almost as tall as Naim. And Naim loves to carry around "daddy's foooot". It is kind of hilarious. He also likes to show D where his feet go when he is transferring, by pointing out where they go or trying to lift them. Sometimes both kids try to do things like dad does, with closed fists, such as weaving their fork between their fingers. Naim also has learned to play ball with D by handing him the ball instead of throwing it, and then walking back so D can throw the ball to him. But he doesn't do that with anyone else. So, being a kid with disabled parents just means extra toys for Naim.

Naim is such a character. He is always making silly faces and noises. He will sometimes just grin at you like you and he are in on some private joke (so private that only he gets it.) He sings ALL THE TIME. He sings kid songs like "Clementine," and "Freare Jacques" and "Mary had a Little Lamb." He sings classical like Brahm's Lullaby, or Mozart, or Beethoven. He sings songs from "Cats" (Je-wic-ah cats and mister swofertees), and he sings his own made up things as he goes about the day. His own masterpieces like, "Time to get my Sooos on" and "More Juice, Please!" He always seems to have a beat in his head. He is always "drumming" with his hands or with a stick. I've used music a lot to work on his speech. Which is improving slowly but surely. There are a lot more clear words, but he will still tell you an entire story that you don't understand. He especially likes to talk on the phone and tell his entire babble stories to the poor victim on the other end.

Naim has a lot of empathy for others. Whether it is Aaron crying or the cats or the dog. He will come tell me, "Aaron's crying," and take me by the hand to where Aaron is. He also understands a bit about Scrapper being sick. He is very gentle with the animals most of the time. He doesn't like it when Abbey barks or is stuck in her cage when we come home. We have to let her out immediately. Naim also keeps me apprised of the running record of his own owies. Making sure that I have inventoried (by kissing) each one. Naim always gives people the evil eye at first, but once he gets to know them, he loosens up and becomes a total character.

Naim is still very orderly, which is sometimes nice and sometimes a problem. Currently his big obsession is straightening the TV I have in my room. It swivels, and I always have it turned to one side. Every day Naim turns it back to straighten it out. He sometimes gets upset if I'm watching it and it is turned, he turns it back to the point where I can't see it. (Sigh.) Sometimes I will walk into a room and notice that all the items on the coffee table are in a row and think, That's Naim. He is very into counting everything right now as well. He has pretty good 1:1 correspondence and is pretty darn accurate up to 20. He counts anything and everything. His cereal, the lights that are on and the lights that are off, the spokes in the back of his chair, anything that can be counted, he counts.

Having twins really shows you how DNA comes into play. They are each their own kid. I hear people going off and analyzing everything they do with just one kid as if it is make or break. Sure, it matters, but I think you only affect probably about 50% of what your kid turns out to be. But it is sure fun watching that unfold.

March 17, 2007

Your turn is your turn and my turn is mine/and we use our thank yous all of the time.

Maybe it's because last week was so horrible with all the barfing and the pooping of the liquid, but this week with the kids was really good. I had fun!

Update on all of us sickies: We all had what was most likely rotavirus. I got terribly, horribly barfing, dehydrated sick last Wednesday. I actually called D and said he had to get over and spot me in case I lost consciousness. This was probably an exaggerated fear, I wasn't really in danger of passing out. It's just that the last time I had a really bad stomach flu, which was years ago, I totally passed out on the bathroom floor. The next thing I remember was waking up and seeing the bottom of my then boyfriend's chin and the sky as he was carrying me through the parking lot to the ER. I'm such a sexy date sometimes. This was all probably exacerbated by the fact that I had just gotten out of the hospital a few days earlier with a kidney surgery and a stent holding my ureter open had fallen into my bladder and caused an infection. But since then, every time I throw up I think I'm going to pass out any second of dehydration. I'm weird that way. I make these asinine associations with things that have nothing to do with each other and then can't shake them.

So anyway, D spotted me while I barfed. I was okay within 24 hours, but then he got sick. Aaron was sick on and off throughout the week. D took a few days to get well. I'm telling you all this because of the most amazing thing: After being surrounded by all our puke and whatever else for a week...Naim never got sick. Not even close. He is Amazingly Healthy Superhero Man. That makes me very happy, though, because I don't think I could have handled one more puke mess.

This week it was just me and the kids most of the time all week. And for the first time in weeks, we were all healthy at the same time. We had spent several days stuck in the house together and finally were able to get out. I went back to the gym after missing a week. This gave the kids time away from me and time out of the house. I could really tell that they needed that. They were just happy and fun almost entirely from morning till night. We did lots of stuff, coloring and little games and play-doh and some little sticker workbooks that they like. We "cooked" together. I had them making jello and apple juice (from frozen) and macaroni and cheese and simple stuff like that. I always try to sneak some vegetables in the mac and cheese. And I just put some frozen mixed veggies in this batch--itty, bitty carrots and peas and corn--and wouldn't you know that Aaron ate around every single vegetable. He is still incredibly picky, but Naim has been on an eating spree and eats everything I put in front of him. I think he is growing bigger than Aaron now.

For the first time alone without my dad, I took them for some walks around the neighborhood without the stroller. I guess I have taken them around my block before by myself, but this time we walked to D's house one day and to a playground today. They both hold on to one of my hands. It has worked okay so far. They do a good job.

This may sound weird but walking with them like this reminds me of walking with my guide dog. Part of it is just the constant presence of having a living thing attached to you all the time. That gentle pull on your left hand is just something that gets built into your muscle memory after you do it for eleven years. And the feel of the pattern of their footsteps. I walked about one step for my dog's two, and it is about the same pace with the kids, just slower. And part of it is that we make sure we stop and curbs and stuff, which my guide dog always did. And then pause when we go up the opposite curb. Every once in a while a kid will refuse to go my direction. I use a technique I used with my dog when she would stall around (usually not while working). I would just keep walking and she would get uncomfortable being left behind and catch up after a minute. This makes me a little nervous to do with the kids. My neighborhood has nearly zero traffic during the day and I don't go more than probably 8 feet until they want to catch up. I just stand there and wait and finally they come when they see I'm not going to give in. It is about a billion times harder to get twins to go the same direction or to catch one if they decide to go opposite directions. So just waiting and not turning around and fetch the other one makes the one you've got with you stay on track as well. It is something we are still working on, so we are a long way from going stroller-less in the world outside my little neighborhood. But they did surprisingly well this week. And it was really nice out, so we had some nice walks.

Yesterday, we went to our little art class at the children's museum. On Tuesdays it is clay and "sculpture" and on Thursdays it is painting. It is a drop in class, so my goal is to go a couple of times a month. We have to take the train and get there by ten. The whole thing from my house to the front door of the museum takes about 45 minutes. But everything on public transportation takes that long, so that really isn't bad at all. The class is a bit like a preschool. They have a little circle time, then they have art stations that they rotate through, then they wash hands and go back to the circle for a snack and a book. The book is usually something about art, but I can never hear/see it so I don't know what exactly. Then they go next door and have a little music class. Then I usually let them play in the museum for a half hour or so, and then we head home. It is a nice little day for them, they really like it.

It is a lot of work for me though to supervise them. Parents have to supervise, there is only one staff member present and about 10 kids in art and about 35(!) in music. Let me just say that 45 minutes is an endlessly long time to supervise two kids to paint. Like, and make sure they don't hurl paint trays across the room or what not. I am way more exhausted than them by the end. Aaron can do his own thing, I just need to watch to make sure he doesn't spill something or steal another kid's paintbrush or something. Naim is tougher. He gets freaked out if he gets paint on his hands, his clothes, the floor, the (covered) table. I'm trying to get him to loosen up about it. But I usually end up just letting him clean up as he goes, because that is what makes him happy. He usually lasts about 30 minutes and then I let him wash his hands and play with puzzles in the circle area instead of paint. I'm doing these art classes for Naim, so he can work on his hypersensitivity to texture, and messes. As I've said before, the kid is a wee bit spectrum-y. I still think there is a chance he might grow out of some of this. I hope it doesn't get worse. That is what I'm trying to prevent. The other excellent thing about these classes is the kids make a big mess and I don't have to clean it up! Yea, Children's Museum!

I have to say that I feel really stupid now that I wasted my money on Gymboree classes last year. They were horribly expensive for a 45 minute class, which is why we quit. They don't do anything there that the children's museum doesn't do, and the children's museum does a ton more. A year membership for the kids and I costs $75, compared to I think it was over a hundred dollars per kid for just ten 45 minute classes at Gymboree. And Gymboree had this crazy-ass rule about not letting me (anyone) supervise both their children at once. You had to either bring an extra person, or take the family class which was geared to kids 6 months to 5 years. Chaotic. The museum art classes cost a whole $2.50 per kid at a drop-in rate. Plus the music class is free, plus all the other stuff they have there (plays, puppet shows, tons of different play areas, and the best part--a big train set!). You do end up seeing some of the same moms and kids there, too. So there are some chances to make connections. Gymboree didn't make it that easy to talk to other moms because the teacher was always screaming at hyper pitches. Anyway, this is all to say that I think Gymboree is kind of a crock. And that the kids and I are having fun in their art classes.

What else? When I was working in Child Life, I made some connections at Boys Town Hospital in Omaha. (I went to high school across the street from Boys Town and we had a lot of boys town kids in my classes, so this is actually a way back school connection.) Anyhoo, She sent me a bunch of DVDs made by Boys Town institute that are ASL-ed classic children's books. Cool, cool. This guy signs the story and then shows the illustration of each page. The guy is a character. He has one of those mustaches that probably has another name but I call it a "Colonel Mustard" stache. It like winds around his cheeks like a beard but his chin is shaved. Anyway, Naim is just freaked out fascinated by this guy. He goes back and forth from panic to wonder at him. Sometimes he stands in front of the TV and just starts signing like crazy with his whole body. He isn't really signing anything, he is just pretending to, but it is hilarious. Other times, he covers his eyes when the guy signs and then uncovers them when they show the picture. He really likes an Eric Carle one about a chameleon.

I have a whole 'nother post in my head about the kids and socialization and their status as sorta KODAs (Kid of Deaf Adult) and what that might mean for them. But I have to save that for another time. But I really think they need to be around more signers. I would love to find a KODA group for them where they could be around kids who sign, or even a group of deaf kids with hearing parents--but so far, no can find besides a few camps. We probably will take a class next year with the homeschooling coop called beginning sign. They will probably know most of the vocab already, but at least they will be around other signers besides mom and Rachel from Signing Time, who they also call mom. Now we have Colonel Mustard, so that's good, too. They are starting to see that the rest of the world doesn't sign. I really want them to know some signers.

Speaking of Rachel from signing time, if I ever meet her, I'm going to thank her for helping us figure out this your turn/my turn business. This whole taking turns business is finally starting to sink in to their heads. Its one of those things that you wear yourself out talking about and think they will never get and then finally they do. I'm not saying they always take turns, by god no-not in a million years. But they know what I mean when I say it. And they know how to do it. Signing Time has a song about Please/Thank you/Share/Your turn/My turn and all the corresponding signs. They love this song and they love the your turn/my turn signs. Sometimes we just play a game where we take turns doing the sign for taking turns. All kinds of fun. And Naim says and signs thank you all day long whenever I hand him anything. I know he doesn't quite get it because he also tells me thank you when he hands me stuff. But it is really cute.

One last cutie thing I want to remember. When Naim puts his pants on in the morning, we have started to have to do this whole elaborate farewell to his knees. Naim has a very special relationship to his knees. He used to be in love with his elbows. In fact, I have several pictures of Naim's elbows that he made me take. But elbows recently gave way to knees. And we have to say, "Bye knee! Bye bye, other knee!" when we are pulling up his pants. And then we have to kiss them. He does and I do and sometimes even Ernie and Elmo do, too. And then, what a joy it is at bedtime when he gets reunited with his knees. There is lots of kissing and hugging there as well. Hey, they are really cute knees, I must admit.

Oh, now I don't feel like I've written enough about Aaron. Must always keep it equal! Aaron is just verbal word boy. He repeats everything I say with near perfect enunciation and learns words faster than I can keep track. We have little conversations all the time where he tells me stuff. I was so excited the other day because he is actually starting to tell me stuff that happened at daycare. I asked him what he played the other day, and he said something I didn't understand which sounded like Hi-EEK. I didn't get it at first so he goes over to the corner, plants himself against the wall, counts to ten, and then says perfectly, "Ready! Not! Here I Come!" Oh! Hide and Seek! We never played that, at least not the ready-or-not part. So he actually understood that I was asking him about daycare and told me what he did. Whoo hoo, what fun.

Okay, that's it. Just thought I'd tell ya that parenting is fun!

March 07, 2007

Me and My Shadows

Heather Armstrong writes the most lovely "monthly newsletters" to her daughter, Leta. It was actually, in part, the inspiration for the whole "Letter to My Children" thing. I'm sure she has them saved in some beautiful scrapbook that her daughter will cherish forever. I wish I could write like that. But I haven't had the discipline or the talent to pull something together like that. I get bogged down writing about crazy family relations and maddening politics or trying to respond to emails about diapers or disabilities on this site sometimes. I don't even think I've written about the kids in a while. I still have kids! I still treasure just the plain ol' mommy thing!

Its ironic that I'm inspired to do this today, because I've just spent the last three days getting barfed on. And previous to that, two weeks of getting snotted on. And previous to that, weeks and weeks of getting diarrhea-ed on. Yes, it has been a tough winter for Aaron. Naim is just fine, of course. He has an endocrine system of steel, apparently. But Aaron has always struggled with his health as I do. Of all the things I could have passed down to him...blindness, deafness, kidney disease...I seem to have passed down to him my lousy immune system. It is actually the one thing that probably gives me the most struggle day to day. Both Aaron and I have to fight for the good healthy days. I'm hoping he grows out of it.

Today I had to drag everyone to three doctors appointments. Thankfully, D came along to help. But we are quite a crew trying to get all of us, wheelchair, double stroller, kids and me, around a hospital. It's not so bad in the pediatricians office, where everybody's kids are making a lot of noise, but it is kind of funny to walk into a quiet and somber nephrologist's 6X10 stark waiting room with the whole crew making a racket. Everyone looks up and stares. Some are disturbed, others are delighted for the break in the boredom.

Aaron and I went to the pediatrician about the barfing, while Naim and D stayed out in the waiting room. It had gone on for almost 48 hours, and although he was drinking and keeping some fluids down, he had eaten nothing in that time. And I had had it with the cleaning of the without-warning projectile vomiting. Kids this age are funny when they barf. They don't expect it or have any control over it. Adults will feel it coming on and try to hold out until they can rush to the bathroom. Kids will just be walking along, minding their own business, and suddenly their breakfast shoots out three feet in front of them, and then they keep walking. Ugh. I ran out of pants today because all of mine had been barfed on. So, the verdict was no surprise: stomach virus. Suppositories and pedialyte. Wait for the runny poop, and then it will be over. Pray Naim doesn't get it. (Aren't you glad you're reading this post? I hope you're not eating breakfast as you read. --Sorry.)

When I came out, D had a bunch of women around him and Naim. They were all cooing and giving Naim suckers and toys and stuff. I notice this with my dad, too. When I leave my kids alone with men, its like a chick magnet. Wouldn't it be cool if guys would come running to help me when I'm struggling to shove my double stroller through a doorway or pay for groceries with an irritable kid on my hip and another one whose stapled himself between my legs? Heh. Women alone with kids is like dude kryptonite.

So then, over to the hospital and to the audiologist to drop of my FM mike that is broken for the 80th time this year. We stopped at a cafeteria and tried to feed Naim actual food while only allowing Aaron juice. Very hard. I did have to give him a small piece of D's peanut butter cookie. And then I watched while he fought off trying to barf it across the table. He did good though. No barfing for the whole afternoon. Then off to the nephrologist to get my kidneys checked. Again, D stayed out with Naim and Aaron came with me. The doctor had me get on the scale while I was holding Aaron. he didn't even care. I said, "You know you have to subtract like 27 pounds from that, right?" He whatevered and walked off. So next time he'll probably freak out because I've lost 30 pounds in a week. B/P, squish on my legs, squish on my kidneys, pee in a cup (While Aaron smashed himself beside me) and out the door. In the waiting room, D is surrounded by the receptionists giving Naim their little desk toys to play with.

Up to the lab for blood work (while still holding Aaron) and to collect my jug to pee in for 24 hours. Then to Walgreen's for pedialyte and suppositories (with Aaron) and home with two cranky kids that missed their nap. But then I was able to fake 'em out and put them to bed an hour early. And no barf as of now. So we might have turned a corner. In total, I held Aaron almost continuously while traveling all around a medical center for 6 hours. He's only this clingy when he's sick. Which lately has been a lot. Aaron held a toy train in his hand for 6 hours as well. I used to not let them take toys with them into places because I thought they would lose them. Not Aaron, you couldn't pry his selected toy out of his hand. He likes to have something to hold on to. My only exception is that I will not let them take toys into the daycare or church nursery, because it just causes problems with the other kids who want to play with it.

I'm writing all this detail down about today, because someday I will have forgotten the fact that I had to take my kids with me EVERYWHERE. I know there are other parents out there in my situation, but many people have far more backup, babysitters, relay people, whatever than I do. Even when my kid is barfing sick, the poor guy has to be drug to my kidney doctor. They put up with a lot. We walk in all kinds of weather, we wait for all kinds of public transportation. Even today, D gave me a ride, but we just parked once and just walked from building to building on this medical campus. They walk up to the ATM with me, they do all my shopping with me, they get dragged to church meetings with me. I can't think of an errand or place I've been in the last six months or longer that I've done without the kids. They are my constant appendage. And they have to put up with me all the time, every day, all day long at home as well. And most of the time, they really do a good job. But sometimes I worry that they get too much of mom and not enough of other people.

But we have had a lot of visitors the last few weeks. My dad has been here for two months and just left last week. (That went extremely well-- by the way.) Although he refuses to babysit, he is someone else to interact with. He will occasionally watch them downstairs while I'm upstairs. My sister FINALLY came and met my kids. And the best thing about that is that now D or I don't have to answer his snotty-ass relatives that passive-aggressive to us about why it is that my sister hasn't met my kids yet. There has been first contact! It was only two days, and the first day Aaron, of course, was really sick and clingy. But the second day was much better. My sister can be kind of standoffish sometimes, but if you can knock that out of her, she can be a lot of fun. So, by the second day, she was interacting with the kids and they were having fun with her. It is a bit of a breakthrough. I think now she will be more comfortable having a relationship with them. Maybe next time will be a longer visit.

I've bitched a lot about D's relatives as a collective lot, but it really isn't fair to do that. I do it mainly to sort of be vague and not single anyone out. But it really is only a couple of people who do the full on judgmental passive-aggressive hate thing. D actually has a lot of cool relatives that I've met. Two of them are his sister, V, and his brother, Q. I love 'em both. They are both so much fun and easy going and relaxed. They don't take themselves or D and I too seriously. They are more perceptive than judgmental. They are fun for the kids to be around and have always just accepted the kids as family. The only bad thing is that they both live several hours away.

They both came up to visit D's mother, who recently had surgery. And they came over and visited us, too. Q had both kids in stitches the whole time. Q shaves his head, and plays this game with Naim to look for where his hair went. It's cute, Naim looks all around, under rugs and chairs, saying "Where Hair Go?" He's really good with kids in that fun way. I always liked seeing Q with kids. Once at KU, I was taking a group of about 8 kids on a field trip to a natural history museum on campus and I ran into Q with this whole line of kids behind me. Q got down on kid level and introduced himself to every one of them, shook their hand, and asked them their name. He just meets people where they are.

He was only up for a day, but V visited several times. And then she did the most amazing thing. She and D were going to go shopping at a mall, and she offered to take the kids with them. Like without me. Like, thus leaving me in the house alone for 5 hours. Alone. In my own house. You don't even realize what a miracle this was. I have literally not been in my house alone for more than 15 minutes for over two years. Not once. I didn't even know what to do with myself. I went to the mailbox, alone. And then realized that I could take a walk. Alone. Without pushing a stroller. Without the whole cumbersome deal that is to do when you can't see well. So I took a walk by myself for the first time in two years. I felt like Julie Andrews at the top of the Mountain at the Austrian/Switzerland border. If my neighbors wouldn't have tried to commit me, I would have ran spinning down the street, singing and arms flailing.

And when my kids came back, they were happy and diapered and fed and had new gifts to play with and a new outfit for each and were happy as could be. They definitely needed a break from me as well. And they had missed their nap as well that day, so they were in bed early. It was a really nice break. Aunt V ROCKS!

I know that next year when we start the preschool co-op they will meet other adults as well. Three is a bit of a breakthrough age for getting out in the world. They are old enough to do a lot more things. They will be talking more and potty trained (we hope) so other people are more willing to take them. I don't know if D will be able to take them alone next year or not. But he will at some point, and so will my dad. So I know it won't be like this forever. I know they won't be glued to me 24 hours a day for the rest of their lives.

The funny thing is that even though I know I need the breaks, I'm sad about that. I will miss having them with me 24/7. One thing that was weird when my guide dog died, was that I was no longer part of this unit anymore. I'm not comparing my kids to a guide dog, but we are a unit. People are used to seeing us together. I'm used to having a sick Aaron attached to me like a koala bear for six hours while he holds his train in one hand and pats me on the back with the other and tries not to barf on me. I'll miss Naim's little check-ins. He goes off and does his own thing, as long as he is within visual range of me and still comes over and checks on me every few minutes. He leans against me with his hand on my leg as he looks out into the world, like, mom--I just need a breather for a minute while I contemplate what to tackle next in the big world, and you are my home base. I'll miss that time after they wake up from naps and want to be held. One on my lap, curled up under my chin, another sitting next to me in the crook of my arm. I get impatient because I have to go cook dinner and they won't let me up. But then I think, at some point, they aren't even going to be here for dinner. Just shut up and savor the moment.

I sometimes wish it could be spread out more evenly. Like I could get more breaks now, but then when they are teenagers, they would want to spend time with me more than teenagers usually want to with their parents. But it just doesn't work that way, so even though I'm very rarely more than 50 feet from my kids now and sometimes want to jump out of my skin to escape, I'm trying to just appreciate every minute of it. Even when it includes being barfed on.

January 23, 2007

No More Preemies: 2 Year Check-up.

For those of you who had preemies, you know that two years old is a developmental milestone. It is when they stop adjusting for prematurity and the child is supposed to be all caught up. We finally got to the doctor for their two year appointment. They are actually 25 months and two weeks old, but the doctor went by 24 months. So, even though he didn't adjust, it kind of happened anyway.

So here are the stats:

Naim:
Age = 24 Months
Length = 34.5 inches
Weight = 26.0 pounds
Head circumference = 50.0 centimeters

Length = 50th percentile
Weight = between 10th and 25th percentile
Head Circumference = between 75th and 90th percentile

Aaron:
Age = 24 Months
Length = 35.0 inches
Weight = 26.25 pounds
Head circumference = 49.5 centimeters

Length = between 50th and 75th percentile
Weight = 25th percentile
Head Circumference = between 50th and 75th percentile

So more or less, they've caught up. The weight thing, if you consider that they started at below the 3rd%ile--not even in the "shaded range"--they've done pretty well. The arc of their weight line is significantly steeper than the average arc, so they did make up a lot during the first two years. After the first year, the doctors/nurses have not worried about the weight thing anymore as long as they are gaining. In fact, the ped said something about how my kids would be more in line with the growth charts from 50 years ago. He says they've changed them because American kids are fatter now. He said slim is a good thing in our society now.

My sister and I were really skinny as kids. We had a neighbor, who was also our school nurse, who always told us we were too skinny and needed to eat a milkshake a day. She got more on my sister than me, because my sister has always been really thin. But it kind of drove us nuts. She was a little plump Italian lady who would come to our class and teach us how to make homemade pasta and sauce, so those were the standards she was coming from. For a while in third grade, after I was hospitalized, she made me eat four of those frosted wafer stick cookies and a big cup of really, really sweet grape soda every afternoon while I was making up work. It was tooth-achy sweet. I can't imagine a school nurse prescribing that now. But point being, maybe the kids' slimness is more based on heredity than on prematurity. They certainly aren't starving.

So the appointment went well except that Aaron has eczema. I'm kind of embarrassed to say this, but he's had it for months and I never thought to take him to the doctor for it. With my health insurance problems, I always have to consider what is worth taking the kid to the doctor for. I often adopt a 24 hour strategy. "Let's see if it gets worse in 24 hours and re-evaluate." The eczema is not severe, mostly it just looks like dry skin which is what I thought it was; he just has a few blotches on his back and he doesn't seem to ever be bothered by them. A few weeks ago, I started putting Burt's Bees stuff on them. The really thick Baby Bee emollient type of moisturizer on top of their regular baby lotion. Aaron calls it putting "goop on my spots". After the Burt's Bees, the spots started improving significantly. They are not as dry and flaky and they are smaller and no longer very reddish in color. I told the doctor this and he kind of snotted at me, "Well, that's not even medicated." So, I'm going to fill his scrip for cortisone and use it to get rid of these spots, and then I'm just going to keep doing what I've been doing and see if that's the end of it.

That pediatrician is hilarious. I'm pretty sure he's on crack. He comes in and talks at ninety miles a minute about stuff I already know and you can hardly get a word in to ask the stuff you don't know and then he leaves and you feel like the wind was knocked out of you and you're not sure what happened. Here is an example of what I was talking about in the previous post. He goes on forever explaining what percentiles mean and what different statistics mean, or tells me some really basic thing about child development. I just want to stop him and say, "I KNOW already. Now can we talk about something I might actually have a concern over?" I feel like telling him, "oh, I have a master's degree in this stuff." Or something. Or is that just totally obnoxious? He has always been a little strange about me and D's disabilities. It's like he is trying to be really cool and open about it, but he really doesn't have a clue so he says some kind of rude stuff without meaning to. Mostly kind of intrusive stuff that has nothing to do with anything. He actually wasn't bad yesterday. Maybe he is getting used to us. But he took us on voluntarily when the kids were on Medicaid and he didn't have to. At this practice they have a quota of Medicaid patients that individual partners can take on a voluntary basis. He took us despite having filled his quota, we heard. So that was very nice of him. But he kind of sometimes acted in the beginning like we were real charity cases. He got into a discussion with D at some point about how D sells software and sometimes does tech support and studied computer engineering, and I could tell he was blown away that we actually do something with our lives. But he's never asked me what I do/did, so there hasn't been a good opportunity to really tell him that he doesn't have to explain the difference between percentiles and percentages to me. In any case, I think he is getting better about us, which is good. And I'm sure they just have these same speeches that they run through for every parent and he's just on autopilot when he comes in. But the man can fit a lot of words into each minute.

The one other little thing that bugs me about him is that he tells me to pull the kids' foreskin on their penis back once a day. I've never heard anywhere else that this is necessary. When I made the decision not to circumcise them, I did a bunch of research on what kind of care they needed and how to prevent infections and whatnot. In everything I read, including the American Academy of Pediatrics official statement, it says not to do this. If you didn't know (and I didn't), I guess the foreskin is sort of attached on babies, and then slowly over time it unattaches. Like this will take maybe four or five years in some kids. So, they say that just in life doing the things boys do, they will loosen it themselves and there is no reason to force it. You can actually cause an infection by forcing it before its ready. So you are just supposed to wash in soap and water and then when the kid gets older and it is all unattached, you teach him to pull it back and wash it. I'm probably not using the right terminology here, but you get what I mean, right? Okay. So last time I was there, he forced Naim's back, and I could tell it was very painful, and it was red for a couple of days. Since then, I've noticed that it was getting unattached, but I never did pull it back even once. So, this time, he does it and it pulls back and he goes, "Oh, I'm glad to see you've been pulling it back." Well, I haven't. Then we get to Aaron, whose all attached still, and he told me I needed to pull it back once a day. And I said that from what I've read this isn't necessary. He looked kind of surprised at went off on varying theories about that. I said I was going by the AAP and the American Pediatric Society. And then he kind of cocked his head, like "whatever you say, silly mom."  So, I guess we agreed to disagree there. I mean, do you think mothers have been pulling back their son's foreskins everyday throughout the dawn of time because it is so necessary to do this? If so, wouldn't I have heard about it? Have you? There is no medical reason for it so I'm not going to do it. Maybe I should send him this. (.pdf pamphlet against forced retraction of the forskin from UN sponsored National Org. for Circumcision Information and Research Centers)

I should probably delete that paragraph before the kids reach adolescence, huh?

Basically, I think that D and I have enough medical experiences to know that you can usually let nature take its course and then try a few naturalpathic things first (a la Burt's Bees) before medical intervention is necessary in many cases. I also am a slow vaccinator, mainly due to Aaron's seizures. We vaccinate, but we do just one or two at a time, instead of like, six. I think he is a bit annoyed by this, mainly because it means they have to think a bit before giving them the shots instead of just using what they use for everyone else. As a medical doctor, I think he wants to jump to intervention and write scrips a little too quickly for us. But I'd actually rather take that than the alternative, when you have to beg doctors for medical intervention after you already have tried everything else.  In general, he gets points for taking us on in my book and I think he is very knowledgeable about most things and means well. So, he'll do.

The only other thing I wanted to add here for this two year kind of status update is some info for my own memory about their developmental evaluation by healthy start. (Healthy Start's assessment tool is kind of meh. They will get a better one next week when their nurse comes.) Aaron is above average in language, way above average in fine motor skills and problem solving, average in social emotional, and slightly below average in gross motor. Naim is average in language, way above in fine motor and problem solving, average in social emotional and just a hair on the average side of the bump in gross motor. I think the problem solving advantage comes from being a twin. They just don't have me there all the time to help them when they get stuck, so they have to figure out a lot on their own. The healthy start teacher gave me a nice compliment about this and the fine motor. She said I have the best developmental toys of any house she's seen, and that they all compliment each other and teach them something instead of being junk. (See? Being a toy snob has its advantages.) I think also because I don't have a lot of money, I am really, really selective about what toys the kids get. Also I use  mostly educational supply companies (or eBay knockoffs of such) instead of toys 'r' us, so that helps as well. I think the gross motor might be a little bit of a combination of prematurity, twinness, and single momhood. The prematurity factors in because, in Aaron especially, his head is just too big for his legs. He hasn't grown into the type of body that can run, jump, and balance yet. He will, but right now he just doesn't have the body for it. Twinness and single momhood kind of go together because I think that I avoid taking them out for walks or trike rides more than I should. We go to the park and stuff, but I stroller them there. Walking out in the world alone with two toddlers going in different directions at different speeds is just dauntingly impossible right now. This is why I signed them up for the gym thing where they can run around in the safety of the gym.

Today was pretty nice out and my dad and I took the kids for a walk with their ride-on toys. With just one kid to watch, it is a total breeze. If I had a 1:1 ratio, I could do that every day and we could probably walk a pretty good distance. We had fun today and I probably need to work on that more. Eventually, I will have to deal with them without the security of the stroller. [Cue Jaws music here]