Yay

Like all kids with Down syndrome, Leo’s language is delayed. I would say severely. I can’t remember what his most recent evaluation said. He is coming along, but I won’t lie and say it’s probably the hardest thing about his Down syndrome, for me. I know he has so much to say. I know he gets frustrated. I see parents at Target and the daycare having full on conversations with their two-year olds. I can’t help but wonder what Leo would like to tell me. I hate that when I pick him up from school I am completely dependant on his teachers to write in his communication book if I want to know how he spent his day or if he had a good day. I know someday I will ask him what he did and he’ll tell me tales of field trips and art projects but for now, nothing (I realize plenty of typical kids choose simply to not tell their parents things too!) I will add that Leo’s receptive language is excellent. I would venture to say he pretty much understands everything.

But the delay only heightens the joy of the language that he does have. And actually, we’ve seen a lot of leaps in the last month. He is signing a ton (he knows the whole alphabet in sign language as well as spoken). And he can count to at least twenty (spoken). One of my favorite new words (I blame myself for this one): “Away.” Because we probably yell this twenty times a night during dinner as well yell at the poor dog to “Go Away!” She is a shameless begger.

I won’t bore you with Leo’s entire spoken and sign language vocabulary. He’s known the word “yay” for a long time, but lately he’s been using it for what seems to be, an expression of his own happiness. Driving to school on a beautiful, sunny April day? That gets a “yay!” Setting Ellie down in her carseat next to him in the van? That gets a yay! Driving into the parking lot of his favorite diner on Saturday morning? “Yay” for that too! It’s fun to see him expressing himself. The language may be simple for now, but the meaning is there.

Pictured above, Leo playing in the backyard. I'm sure he said "Yay" either right before, or right after this photo was taken.

The War of the Rasberries

Leo and Ellie are starting to crack each other up and it’s so fun to watch. Last night during dinner, I’m not sure who started doing the raspberries first (for those of you who don’t know what raspberries are—wait, how can you describe raspberries? I don’t know). Anyway, Ellie was eating corn and squash and then it started to go everywhere as she rasberried. Leo joined in and it was a back and forth full on raspberry conversation. And then began the cracking up. And really is there anything more adorable than the sound of a nine month old giggling? That’s the great thing about having kids around. It’s hard to take life all that seriously when you have someone spraying corn and squash on you and laughing.

Pictured above, the partners in crime this morning as they get ready to leave for school and daycare. See that smile on Ellie’s face? That is a look reserved only for Leo. He can make her smile bigger than anyone.

Is She Eating Well?

Took Ellie to the ped for her nine month check-up yesterday. Thank goodness it’s a no shot month. And I refused the TB test. So there. I was really wondering if she had officially outgrown her infant car seat (which I am still lugging her around in—no wonder my back is screaming). It’s just so much easier to contain her in that while I get Leo into the car. Moms of more than one, how do you wrangle them all? I know it’s possible. You just Do It. But I am stalling. The good news is, she has a little more time in it. But she is no small girl! And I bought this adorable Britax with the cow print so it’s not like I don’t have a cute alternative.

21 pounds, 28 inches. For those of you keeping score, that’s 90th percentile for weight (what can I say, our family likes to eat) and 50th for height. It was a pretty quick visit. We talked about solid food. Apparently she can eat pretty much anything now except milk, shellfish and peanuts. Oh and this being New Jersey, our doctor reminded us no calamari! For some reason I found this hilarious. He went through the gamut of questions about her development. Is she sitting independently? Crawling? Babbling? Transferring objects? Of course my mind went back to these visits with Leo. I didn’t know how delayed he was and now that I think about it, I was never that bothered by those questions because I just assumed all his stuff would be later. I think it would be harder for the second child to have DS, because I would think it would be difficult to not compare it the first, to what you know. But it did feel strange to say yes to everything. To not be worried. At least about development. Of course there are plenty of other things to worry about. And we talked about the MMR shot (um, worry). I told ped I wanted to space it out and he said fine.

Pictured above, my little Incredible Hulk contemplates how she will conquer the living room.
Is she eating well? Um, yeah.

A Standing Baby and Miso Soup and Putting Leo to Work

Some notes and random thoughts from the weekend.

-Ellie’s two top teeth are cutting big time. The top left is out and the top right is just about out. Maybe that explains the miserable night we had Saturday (awake every hour it seemed and it took two hours just to get her down). Her favorite phrase right now is “Ah Duh!” She says it constantly. I don’t think it means anything, just her playing with language, but it’s very cute. She is waving like a professional now, on command. If you wave at her she smiles like it is the most hilarious thing and then waves back.

-Trader Joe’s makes an amazing instant miso soup. I spotted it on my bi-monthly shopping trip there. I know this sounds kind of ridiculous, considering miso is pretty much instant, but in my defense, this one comes with dehydrated tofu and scallions and I think seaweed. It is delicious. If only I wasn’t the only one in the house who liked miso (and feta and olives and kim chee and pretty much anything else that is stinky) I would design a whole meal around it!

-Leo is starting to be helpful around the house. When he feels like it. He spilled water (his new favorite thing is to drink out of a water bottle, probably the evil poisonous plastic sort). This weekend he spilled about a quarter of a bottle on the kitchen floor (I think it was an accident. I handed him some paper towels and he cleaned it up! Of course, he also went on to wring the paper towel out and watch the water drip all over the floor but hey, I am trying to be positive here. He gets really excited when you praise him and when he does something he thinks deserves praise (like bringing his sister a toy when she cries) he will clap for himself until you join in.

-We put our deposit down on the fence for the backyard. Construction will begin as soon as we get a permit from our township. Here’s hoping there are no glitches. I am expecting this will completely transform our summer. It will allow me to be outside with both kids and the dog, alone. I can’t tell you how not relaxing it is to have Ellie in the saucer, the dog on a leash and Leo, running down the driveway towards oncoming traffic. I have images of me gardening, the little ones playing and the dog frolicking. The other image is of kids playing, dog frolicking and me, relaxing on one of our lovely Adirondack chairs with a chilled glass of white wine or cold beer. That to me is summer at its finest. No surprise that I am dreaming of this today since in New York City it is gray and rainy and doing its best imitation of Portland, Oregon!

Pictured above, Ellie demonstrating her standing skills, Leo pitching in and a scene from out backyard (squint and you can see the sad, falling down fence in the background). I love the expression on Leo’s face. And does he ever love that dog. Good thing because she drives me insane.
To come: some better “Before” pics of the backyard, and of course, the “Afters!”

Why I Don’t Say I’m Sure Everything Will Be Fine

A friend of mine is pregnant with twins and was last week trying to decide whether to get an amnio. Her ten-month-old daughter actually has a chromosomal anomaly (not DS) that was diagnosed prenatally via amnio, so she is well aware that bad stuff actually does happen to real people. We chatted via email about the decision—she knows I’ve been through it all (a cvs when I was pregnant with Ellie and when that didn’t work, an amnio). When she finally wrote to tell me that she had decided to go ahead with the amnio, I wished her the best and told her at least she knew what to expect (since she’d had one before). I reminded her that it had been my experience that the build-up of all those tests is way worse than the actual procedure.

But I did not say not to worry. And I did not say that I was sure everything would be fine. Because guess what folks? It might not be. Sure, the odds are that it will be. And I hate to sound like an incredibly negative “Debbie Downer,” but bad stuff does happen. Until it happens to you, I think it’s easy to think it only happens to other people. But someone has to be that one half of one percent (yes, that would be me).

When you meet with the genetic counselor or chat with your OB about statistics, the so-called “age related risk” associated with certain chromosomal defects, the odds are very small that something will be wrong. I was 30 when I got pregnant with Leo. After the nuchal scan my odds jumped from something like 1:650 to 1:350. I was just above the cut-off where most OBs recommend amnios (when the risk of a complication from the amnio itself is higher than the probability that there is something “wrong” with the baby). I will never forgetting standing in my bedroom as I took the call from my OB where she attempted to explain my results (I smile now as I recall trying to wrap my brain around all those numbers—now I feel fairly confident that I could probably teaching a basic course in genetics and prenatal testing). Less than one percent chance of Down syndrome? “Screen negative”? Sounded good to me.

I didn’t have an amnio with Leo. And that led to one of the biggest surprises in my life. I wouldn’t change a thing about how it all happened. Before he was born, I told myself that everything would be ok. That my baby would be healthy and “perfect.” For a long time after he was born, things were not ok. And for a long time I didn’t think things would ever be ok again. And then slowly, there was a shift. I can’t put my finger on when it happened but there it is. I think very differently about life now. There are no guarantees. I now know that someone has to be that one percent. There’s an old Yiddish proverb and it goes like this: People make plans; god laughs. It could be you. And it could not be you. if it is you, you might find out that it’s not the end of the world that you thought it would be.

Edited to add: Not to say that having an amnio come out negative for anomolies guarantees you a "perfect" kid. Plenty of disorders are not chromosomal. And your chromosomally perfect kid could (god forbid) get hit by a bus and be brain damaged (sorry but it's true). You just don't know. That's life and that's being a parent. Taking on all the risks and joy that it entails.

The Boring Sleep Post

It seems that all blogs relating to babies eventually come to the sleep post. At 9 1/2 months, Ellie is a pretty bad sleeper. And I think I have only myself to blame for this. I also think the set-up of our house complicates things. We have three bedrooms and presently use the third bedroom as our guest room (the room that should really be Ellie’s). Ellie’s crib is in our bedroom. In an ideal world I would have Leo and Ellie share a room but I just don’t think Leo is ready for this. To be honest, I don’t trust him alone with Ellie. I have always been afraid to really let Ellie cry, for fear it will wake Leo, who is a fairly good sleeper. But I think I have come to the point where I need to let her cry. Otherwise, I am going to be the one bawling. I need some sleep. I need more than three-four hours at a time. I mean, she’s nine months old. Is that too much to ask?

A typical night goes like this:
-9-10pm: Nurse to sleep. Usually takes about an hour. Carefully deposit her in crib. Soothe with back-rub if fussy. If she wakes, nurse again. In short, nurse her to sleep. I know, that's my first problem right there.
-Wakes sometime between 1-3am to nurse. Falls right back to sleep. Again, carefully deposit in crib.
-Often wakes again around 5:30 am to nurse.

See what I mean folks? This is the pattern of maybe a 3 month old. And it wouldn't be so awful if I could fall right back to sleep each time she wakes, but I often cannot. My mind starts to wander. And race. And I hear her every wimper.

That third bedroom is our guest room. It’s also right next door to Leo’s. If I let her cry in that room, will it wake Leo? The only way to find out is if we move the crib and just try it It's an ideal guest room because it has its own bathroom. We don’t have a lot of houseguests but when we do, it’s so nice to just put them in there. However, we do also have a lovely finished basement with a perfectly decent bathroom that can serve as a guest room. Oh the permutations are dizzying.

I think there is a part of me that is also resisting putting Ellie in her own room because somehow that signals she’s not a newborn anymore. Yes, I’ll admit it. As much as I want sleep, I don’t really want to “cut the cord” just yet. I know I’m being ridiculous. It’s not like she’s getting her own apartment. But there it is. As much as I treasure sleeping without her in the bed, I can’t say there is anything sweeter than waking up to her soft little breath and sweet mouth. I love watching her sleep. I love the way her little lips part just slightly, how she sticks her bottom up in the air (why do babies almost universally sleep this way?). As a newborn she practically slept in my arm pit. It took almost a month of me sitting up and nursing her to realize that if I just side nursed her in the bed, we could both sleep. And then we created a bit of a co-sleeping monster. For a while she would only sleep in our bed. She needed the feeling of another body next to hers. The second her body hit the Pack N Play her eyes would open and the wailing would begin. By default, we started co-sleeping. I guess I should be grateful that she sleep in the crib at all, but she is too old to be nursing to sleep.

And as much as I want to move her, there is this other part of me that thinks, big deal. So you’re not sleeping that much. As my own mother might say (as she was known to say in trying times, “this too shall pass.”) These baby days, these so called “hard” times, they are so short lived, in the grand scheme. And for all the difficulties there is so much joy.

And now, as I drone on and on, I am boring even myself with this posting. In theory, I like the idea of “crying it out” (CIO for those of you in the know) but I hate the idea of her being so upset. I also want her to learn to soothe herself, to put herself to sleep and wonder how that is possible if you don’t CIO (by the way we let Leo CIO and it worked wonders). I guess the next step is to move the crib at least OUT OF OUR BEDROOM (gee, that would be progress, wouldn’t it?), and figure out how the whole downstairs guest room thing will work. I make it sound like we are overcome with guests on a weekly basis. We’re not but I want the guests we do have to be comfortable. And I want Leo to not be woken up by Ellie. And I want to sleep for 5-6 hours straight. Again I wonder, is that too much to ask?

Pictured above, my little sleeping Ellie (sadly I didn’t act fast enough to catch the beloved bottom in the air pose). She looks so comfortable on our $3,000 mattress (don’t ask).

Thank Goodness That's Over

Leo's eye surgery is done. Can't say I would like to go through that again (and I wasn't even the one who had surgery!). We had to be at the hospital at 7am and since the daycare doesn't open until 7 that meant Ellie got to come adding a whole other layer of fun (actually she was quite well behaved and she got lots of compliments and attention in the family waiting room). Praise to the person who decided there should be mini tvs in the room before surgery as Leo got his full dose of Elmo. And MIL was in town so it was nice to have a third set of hands.

Leo was (understandably) very uncomfortable upon waking up from the anesthesia. I didn't expect him to be so out of sorts. I kind of go into auto-pilot mode in situations like this. I just held him and tried to keep him from hurting himself. He was bothered by all the wires and tubes. After both sets of ear tubes Leo was pretty mellow but I guess eye surgery is in a different category of misery. He was writhing around and pretty hysterical. And is there anything more sad than a tiny hand with an IV in it? It makes me so grateful that Leo has (knock on wood) been relatively healthy. My heart goes out to the parents who have to spend so much time in hospitals with their sick children. We were there for five hours and that was plenty.

Yesterday afternoon Leo was zooming around the house like nothing had happened. If he didn't have some rather frightening (though apparently normal) pools of blood on the sides of both eyes, you wouldn't even know he'd had surgery. This morning we went on a nice walk to the park with the dog and then came home to be told by the doctor that he shouldn't play outside. Oops. You try keeping a 3 1/2 year old inside the house on a beautiful day!

Happy Birthday Dad!

Today is my dad’s birthday. Not to be confusing, but I call my dad Rog. What can I say, my parents were hippies and for some reason I called them by their first names. I know. Don’t get me started. Now that I’m a parent, I can’t imagine it.

Anyway, I just wanted to give a shout out to my dad on his birthday. I miss him a lot and it bums me out that we can’t be closer to him and to family in general. I really wish things had worked out so that we could have lived nearby. It breaks my heart to think of my kids growing up so far from their grandparents and extended family.

But on to happier things. My dad is great guy. He is an amazing artist and teacher. He is incredibly dedicated to his craft, both in the studio and the classroom. I think sometimes he feels like teaching is a means to an end. His true passion is creating art but I think he knows how much his teaching has touched a great many people. His enthusiasm for creating is infectious. I can’t tell you how many people have taken me aside to tell me what a wonderful, inspiring educator my dad is. How they didn’t think they could draw, but they actually could. My dad has taught me some wonderful lessons. Here are just a few of them, in no particular order:

-It is wrong to kill spiders (and moths and any other small being that finds its way into your home). It didn’t ask to be a bug. Seriously, I think of this every time I see a bug in my house.
-Soy sauce tastes good on most things.
-It’s not necessary to use every pot in the house when cooking a meal but it is possible.
-It’s ok to be a little obsessive. It can lead to great things.
-One of the sweetest pleasures in life is to work hard and end the day with “wine and cheese hour.”
-Family is important. Do not take them for granted.
-If you work really hard at something, you can succeed (where there’s a will there’s an A) and even the most math challenged person can learn multiplication tables. I promise.

Pictured above, my dad, in one of the first photos taken of him as a grandpa. That’s him with a very little Leo, at about two weeks old, in our old apartment in Brooklyn.
Have a great one Rog!

Gulp.

Today when I dropped Leo off his teacher asked me if I had a few minutes to talk. Why do I have such a fear of authority? Is it some sort of guilt complex my mother instilled in me? At least I knew they couldn’t be kicking Leo out of school (that’s always my fear, that the daycare will say they can’t handle him. But he attends a private preschool that specializes an almost exclusive DS population. The daycare is for aftercare since his preschool ends at 3pm and I work until 6pm). Well it turns out, she thinks he’s ready for potty training! And she was thinking the upcoming spring break would be a great time to do it. Apparently there is a “window” and he’s at it. Great so since I am not a SAHM and I can’t just take a week off to potty train him, does that mean he won’t ever get potty trained? Of course I know the answer to that question, but it still brings up all sort of guilt and questions, like is it possible to have a special needs kid and to work full-time? I forgot to mention yesterday at the adult DS panel, all the young people talked about how their parents drove them to their respective jobs. I then thought about how it’s possible that Leo will need a babysitter well up until adulthood. How are we going to swing that? Anyway, the good news, he is “cognitively” (according to the teacher) ready to potty train. But how about mom? Is she ready? Do I have a choice?

A Big Question Mark

Yesterday I attended a program that included a panel of graduates of Leo’s school. They were all in the early to mid twenties. The purpose of the panel was for parents of current students to get an idea of what their son or daughter could go on to do after finishing school.

My first thought was would it really apply to Leo, since he is coming of age in a different climate than even ten years ago. The therapies are a bit different and also I think early intervention is better now. I haven’t had a lot of interaction with older kids/young adults with Down syndrome, so I was pretty curious. It’s almost impossible for me to look at Leo now and think about him as a teenager or even an adult (as I’m sure it is for most parents, DS or not). He is almost universally adored by everyone he meets (the nurses came out from all the offices this morning to get hugs at the pediatrician’s office this morning). But I’ve often wondered how people will look at him when he’s older. Somehow adults with DS don’t seem to hold the same charm that the babies and children do.

The range of abilities struck me. One young woman works at a city office where does she does clerical work (a job held by many people without DS). Another volunteers at a school. Another works for a big restaurant chain. For the most part their speaking skills were excellent. One young woman had an incredible vocabulary. And I should add that it’s not easy to get up and talk in front of twenty or so adults. In terms of public speaking, that’s one thing that is really important to me—I want Leo to be understood. I hate the idea of people not knowing what he’s saying and having them chalk it up to the fact that he’s just not smart. What hit me, and kind of freaked me out is how much higher functioning the girls were than the boys. But then I think about how much more verbal women are than men in general (in the non-DS population) and I think maybe it’s just related to that? One young man was having a hard time remembering where he worked and one of the teachers had to coach him. That was a little uncomfortable, but I think he was also extremely nervous. It was very sweet how the girls were passing around their certificates of achievement; photos of them ice skating and doing gymnastics. The young woman who works at the city office had a framed letter from someone in the community who she had worked with. It went on and on about how in all his years doing work with the city he had never encountered anyone with a better work ethic. It was wonderful. And the young man with the poor diction? He told us all about his family and his eyes lit up when he spoke of his nephew. “He loves me a lot,” he said. “I make him laugh.”

After the panel was over I pulled one of Leo’s teachers aside. I apologized for my ignorance but told her I couldn’t help but notice the stark difference between the boys and the girls and asked her if she felt like girls tend to be higher functioning. She said there is no rule and she went on to tell me she thought Leo was very high. Actually she started to and then she stopped herself, almost like she realized she shouldn’t be saying that to me. False hope? Who knows but it made me feel good.

When Leo was born, I mourned the baby I thought I was having. I mourned all the things Leo wouldn’t do. Leo wouldn’t go to medical school or be a lawyer or go to Harvard. But the joke is, who will? Certainly not me! In the end, I want Leo to be happy. And I want him to feel fulfilled. I want him to have a community. I want him to feel like he’s participating in life. These young people all seemed to be doing those things. I want Leo to be high functioning but I also fear that with high functioning comes the curse of knowing you are different. This wasn’t discussed at the panel (obviously), but it’s a conversation I would love to have with some of the parents of the older children.

Pictured above, a really creepy looking crystal ball. I’m glad I don’t have one. The future is far away and for now, that’s fine by me.

Thanks ER

What a crazy couple of days it’s been. Monday night when I picked Leo up from daycare he seemed ok. But when he let me buckle him into his carseat without protest and proceeded to ride silently all the way home, I had a feeling he wasn’t well. Then he wouldn’t eat dinner, which is always a red flag since Leo is definitely an eater (what can I say, he comes by that honestly). But he wouldn’t even come to the table. He was hysterical when I turned off Dora and then proceeded to wail and cry as I tried to feed Ellie her tofu and avocado and sweet potatoes. Then his wailing started to freak her out and she began to cry. Then her crying agitated Leo. Then Ellie flat our refused to eat at all and I found myself annoyed with Leo which isn’t really fair. Then I felt spread way too thin and that I was being a sucky mom to both my kids, to Leo who was sick and needed me and to Ellie, who at nine months needs a lot of attention, especially when eating and trying new foods. Basically it was a mess. Leo had a bit of a fever so I toyed with the idea of giving him a bath to cool him off but he was just so out of sorts that I decided the only thing to do was to give him Tylenol and put him to bed. Out of his misery. Luckily he went down easily. He’d been on a field trip that day and missed a nap, so that may have been part of it. I was really worried I’d have to keep him home sick the next day and with the work I am missing for his upcoming eye surgery it was really stressing me out. I let him sleep in the next morning and took his temperature first thing when he awoke. No fever, and he was off to school.

Tuesday is his eye surgery to correct intermittent strabismus (basically it’s a lazy eye). It’s been a whole thing to get the surgery scheduled (blood tests, a pediatrician visit to clear him). And of course, he failed the clearance this morning. Sigh. A suspected sinus infection. Or something is gumming up the works and making his nose a real mess. And honestly, he doesn’t seem like he feels well although there was no wailing last night and plenty of eating. The good news is that both tubes are still in place so there’s one surgery we can cross off the list. The ped had me concerned because he hadn’t been able to locate the right tube.

So now we are putting him on an antibiotic and waiting a few days and going back to the ped for a check on Saturday. Hopefully he will be given the clear. I am trying to be optimistic about it but at the same time want him to be healthy for the surgery. I asked the doctor if they would have to intubate him and realized the only reason I know what that means is from watching ER. That made me smile and I thought about telling the doctor that but I figured he wouldn’t care. Pictured above: All hail Children’s Tylenol. Nectar of the gods.

Addendum to my First Time Mom post

I forgot to mention some crucial information about why I feel like a first time mom. It’s a lot more than the developmental stuff. Leo was an insanely easy baby. He slept through the night at six weeks. He didn’t teethe. In fact I didn’t know he had a tooth until he bit me while I was nursing him (I’m not sure what this says about me as a mom but it’s the truth). Ellie was not easy. In fact I don’t think I put her down until she was about three months old. For the first month she didn’t sleep at night. I mean not at all. And she was fussy. Really fussy. Thank goodness she completely mellowed out at four months and she’s now pretty easy going. She’s still way more opinionated than Leo ever was but that could also be a personality thing. I think Leo is making up for lost time now because presently he has TONS of opinions.

Leo hardly cried as a baby. I remember him sleeping through his diaper being changed! It was so sweet how he would fall asleep on me so easily. So many sweet memories of holding him while he slept. To be honest, Ellie had me worried there for a while. I was like, whoa, this newborn thing is actually hard. Now I see what all the fuss is about. I don’t like to make generalizations but I think most of us would agree that babies with Down syndrome are pretty easy babies. I think it’s a gift. I can’t imagine having to deal with that surprise diagnosis and a fussy baby. He was so serene and easy. How could I help but fall in love with him?

Pictured above, Miss "Fussy" aka Sleep Striker Ellie (who is now the definition of sweet and mellow). She looks like a tough customer, doesn't she?

Old School

This is totally random but I love the fact that Starbucks is using their "old school" logo on their paper cups now (I couldn't find an image with the paper cups so I'm using this shot of the ceramic mugs but the logo is the same. You get the idea). They are doing so to promote their new Pike Place Blend. It reminds me of the good ole days when Starbucks was pretty much just, well, coffee! And I have such fond memories of making the pilgrimage to the "mother ship" aka the original Starbucks store at Pike Place Market in Seattle. These kinds of small things excite me, just like I get a little giddy when I see that Starbucks is using their holiday cups (it usually happens right before Thanksgiving). They have a different design every year. To me, it means the holiday season is on its way. What can I say? I don't get out much.
We won't talk about how my New Year's Resolution was to stop spending money on coffee and make it at home or get it free at work. Sigh.

Siblings

My sister and I are eleven years apart and have different mothers so I pretty much consider myself an only child. I was eleven when she was born and as thrilled as I was to finally have a sibling, I was also very much distracted at the time by Michael Jackson, my new Walkman and finding the best lace leggings to go with my off the shoulder sweatshirt. So I am a novice to this sibling thing and here is a pair of them, in my very own house!

When Ellie was first born, Leo wasn’t all that interested. We taught him the sign for baby and pointed babies out to him every chance we could get when I was pregnant, but it wasn’t until she finally arrived that I think he “got” it. When he came to meet his little sister for the first time at the hospital he seemed interested in holding her. We helped him do so and he was fine for a few seconds until he wasn’t. Then he looked at me and then at her and said “bye.” He made his point.

Since Ellie has become mobile, things have really changed. First of all, Leo fascinates her. She watches him. She stares and studies him and seems both puzzled and amused. He does some very sweet things, like brings her toys (sometimes it seems like he is almost throwing them at her but I guess I should try to put a positive spin on it). He loves to feed her (see picture above). You have to give the guy credit since he's pretty much the only one who is able to get her to eat peas. He seems to enjoy being near her, but on his own terms. For example, the other day it appeared that he was sort of reading to her, and that was great. Until she had the nerve of trying to touch the book he was holding! And then began No! Mine! And the scooting away to the other side of the room away from said baby.

I hear myself and feel like a total cliché. Leo! Share with your sister. Leo, can you give Ellie some toys? Leo, can you let Ellie read that book? I feel kind of bad for the guy sometimes. Here he was, minding his own business as an only child and suddenly along comes this annoying little creature who wants to touch all his stuff AND keep his mom from spending as much, if any, one-on-one time. I think the benefits of having a sibling far outweigh the negatives, but it’s still something I think about a lot.

I hate to sound corny, but my heart swells at the above photos. Leo looks so grown up to me. And sweet. And I love the way Ellie looks at him. I swear it’s an expression she gives only to him. Whatever Leo is doing, Ellie wants to do. One of Leo’s favorite things to do is “organize” the DVDs. He just goes through each one methodically, looking at the covers and replacing them in neat stacks. Ellie seems to agree that this is a very interesting project. If Ellie could talk, I think she would be saying “Whatcha doin’?”

And did I mention that I still can’t believe there are two of them?

First Time Mom With Two Kids (And They're Not Twins)

I joke with just about everyone I know that in a lot of ways, I feel with Ellie that I am a first time mom. I didn’t know what to expect with Leo, didn’t know when babies were “supposed” to do things. When he didn’t sit up until he was ten months or crawl until he was fifteen months or walk until he was two, well I knew that wasn’t typical, but I had nothing to compare it to. I remember when Leo was a baby people saying things like “oh it goes by so fast, enjoy it.” I remember thinking, really? It does? Because it seems like Leo’s been doing this sitting thing for a while. And he’s not crawling and he doesn’t look like he’s about to any time soon. The stages just kind of dragged on and on with him. They were pleasant enough, but I wouldn’t exactly call them fast moving. I sort of secretly loved the fact that he was a baby well up until he was two (I feel like walking is sort of the line of demarcation between baby and toddler).

I’ll never forget Ellie’s three month check-up. As the doctor turned to leave I asked him if everything seemed ok with her. “Yes, why? Are you concerned about something?” His brows furrowed as if alarmed, that he could have possibily missed something. I told him I just didn’t know what it was like to not worry about a baby. With Leo every check up had been stressful, depressing, humbling and often confusing. And Leo was relatively healthy, having been spared the heart problems so many babies with DS have (maybe someday I’ll talk about the emergency c-section that got him here, followed by seven days in the NICU but not tonight).

In no way is this a slight on Leo or is it meant to sound that Ellie is better, but watching Ellie is truly shocking. Now I know what people mean when they say it goes by fast. Here’s how it went, and I don’t think Ellie is above average or anything. I just think this is how it happens. One week she was sitting. A few weeks later she took some tentative crawls. Two weeks after that she had the run of the house as an expert crawler and was pulling up on anything that was (or wasn’t) nailed down. It’s a joy to watch. And it’s fascinating to almost be able to watch her little brain work as she figures out how to move her body in a way to get what she wants. And here’s the thing. Her body cooperates. I remember the same thing with Leo, only everything was just so much harder for him. And slower. It makes me sad in some ways, that everything had to be so deliberate for him. We just took for granted that Ellie would sit and crawl. And that she will walk. And when she does things we clap and cheer but for Leo, it was a celebration, because it got so long to get to wherever he had arrived. The milestones for both of them are different and wonderful. But even with this being #2, I feel like I’m experiencing everything for the first time.
Pictured above, Leo looking so tiny, just about eight months ago with his new sister Ellie, only a few weeks old. Not pictured: their terrified "first time" mom.

Some Thoughts on E.I.

Many of the blogs that inspired me to start my own are those of parents of babies with DS. I feel compelled to share some thoughts I have on Early Intervention as I read about others’ experiences with it. I don’t want this to sound preachy and with Leo still in preschool I am hardly a veteran, but I do want to share some general feelings about my own experience with E.I. There’s a lot I wish I’d known. And to be honest, I think people said something similar to this when I was in the thick of E.I. But like most things in life, sometimes you have to experience it yourself before you truly believe it and understand it all.

At 3.8, Leo has been out of E.I for almost a year. E.I. is an amazing, important program and I think our generation of kids will have very different experiences, in part because of the accessibility and access to E.I. for most kids. When Leo was first diagnosed it was a beacon for me in those dark, early months. I designed my days, my weeks around those visits with the cheerful young therapists. I sat cross-legged on the rug of our little Brooklyn apartment, gulping up their information. What should Leo be doing? What is he not doing? What can we help him do? I would do anything to help my baby. Not all the therapists were helpful and sometimes they were not all that tactful. I pressed them for details. How far behind was Leo? Would Leo be considered high or low functioning? When would we be able to tell? I stewed when the OT assured me he would be crawling any day and months went by with no progress. I seethed when the PT informed me that Leo “had to crawl” or else he would have a difficult time acquiring all the other tasks, including handwriting. Handwriting?

At 3.8, Leo is walking. And running. And jumping. And climbing (see above entry relating to his net ladder climbing abilities which are definitely more advanced than my own). I wish the new mom that I once was, in the early days of parenting could see Leo now. I think E.I. is a wonderful gift, but I also think it can be so dangerous to the sometimes fragile parents who are just a little bit terrified as they begin to navigate these unfamiliar waters of “special needs.” If I had a dollar for every therapist who told me Leo would do x and y when Leo was ready, I would be, well, I don’t have to finish that sentence. But guess what? It’s true. I just think E.I. is hard. It’s great when things are going well, it’s wonderful to have that extra set of eyes when your baby does something that he or she is “supposed” to be doing. But what about when she doesn’t perform? And when the plateau hits and sticks for what feels like months. Or a year (seriously, Leo was going to walk “any day now” for a year. And guess what? Shortly after he turned two he pretty much just walked across the room one day). I felt like I was constantly holding Leo up to some measuring stick. What should he be doing? Is he doing the right thing now? How about now? And does this mean he’s going to be, gulp, sort of “normal?”

In the end, I will always be grateful for the wonderful E.I. services that were available to us. When Leo was evaluated for preschool the therapists all agreed it was obvious he had received excellent early therapy. I’ll admit—I beamed. I blushed. I was proud of my boy. But I wish I hadn’t been so hard on Leo throughout all those services. And I wish I hadn’t been so hard on myself. I wish I’d known the outcome after the three years would be a delightful little boy with a boundless amount of energy who at 3 1/2 was beginning to write his own name, read his own name and count to 20! Who can climb up and down stairs (slowly, but still!) and climb into his own car seat. And did I mention Leo’s ability to say “Dora” with the most perfect diction you have ever heard?
Pictured above, my little Leo at about 11 months, demonstrating his excellent sitting skills. Go Leo!

Ear Fluid and Progress Notes

After last week, with Leo’s school calling me not once, but twice, to come pick Mr. Sickly up, I was a little worried about the weekend. He seemed fine though, in spite of the fact that one of his ear tubes is AWOL (there’s another probable surgery looming there). I live in constant fear of ear infections with both kids since, according to the doctor; they have both inherited my freakishly narrow ear canals and therefore are even more predisposed to infection. And poor Leo with the DS and the small canal thing—geesh, the poor guy. I am watching Ellie like a hawk since last week she had fluid that the doctor said could turn infected. OK, enough with the ear fluid! OMG isn’t this riveting?

So, the zoo. It was great to see Leo just able to run around and do his thing. He bounded up the netted ladder like a teenager at boot camp. I was impressed. And each time he went down the slide he went faster and tried more daring poses. Belly First! Belly First with hands forward! It’s great to see him so fearless and independent and keeping up with even some of the big kids. As I mentioned in my earlier post, it was great to see the changes in him in just a few months. I have still not gotten the nerve up to take him to the zoo by myself (with Ellie), but I can see that it’s not far from being a possibility. He listens better, doesn’t wander so much. However transitions are still a struggle. He could have stayed at that playground All Day. And then he could have stayed at the petting zoo the Rest Of The Day. Sometimes distracting him can be an almost two person job. But we’ll get there. And when I get frustrated with him I try to also focus on the positive when I can.

Oh the glamour of Saturday night

Partner is out tonight and I am home with wet hair and a pile of laundry aching to be folded and two (for the moment) sleeping children. Ellie has a habit of going down and then waking up just when I want to go to sleep. Oh well. I should enjoy the peace while I have it.
I feel such a sense of urgency when they are asleep, like there is so much I should DO. Instead I surf mindlessly on the web and read and reread Bloggers "how to post a photo" directions to no avail--I am smart, why don't I get it? I really want to show you guys my adorable children!!!

Today was lovely. I would have loved to have posted photos of Leo feeding the goats and sheep at the zoo, and of Ellie, looking so grown up in the Maclaren stroller, having graduated from her carseat/Snap N Go stroller deal. Can I also just mention what a melow little joy she is? Such a happy, happy baby. Leo did really well at the zoo too. The last time we went to the zoo was on Halloween and I can see the difference in him even from then--he follows directions so much better and is just not so all over the place. It was almost mild today--spring is visible. I even saw lupine and some hostas in the yard, eaking their little heads out. I wish I had more time and money for gardening.

Oh, and the Big East Coast City we are near? That would be NYC. I didn't mean to be too mysterious.
Now who can help me post pictures. I am following the directions but it just loads and loads forever. So frustrating!

Hello.

Well I am finally doing it. Inspired by the many wonderful bloggers out there, I am joining you all. I want to share my experiences, commiserate and maybe just vent sometimes, about life, life with two kids, maybe more specifically (but not necessarily) about life with my son L, who has Down syndrome. As an aside, I always wanted to start a blog to talk about the DS but now that he is older (a wise and mature 3 3/4 (ha!) I don't feel that the DS is so all encompasing. It's not completely who he is it's just a part of him. Believe me that it took me a long time to get to that point. So it will be about DS sometimes, but I imagine it will cover a lot of other things too.

So, an introduction. I just turned 35 (I am still shocked by how much older 35 looks on paper then 34. Ahem.) and am the mom of two; L (see above) and E who will be nine months (how the hell did that happen?) next week. I am married (at least in my heart, if not on paper) to a wonderful woman. A little over a year ago we made the jump from Big Metropolitan East Coast City to the burbs, where we bought a house. For the most part, I love it. I had my fun in the city. But I'd be lying if I said I didn't miss Thai delivery and our walks to the park where there was Always Someone To Play With. However I do not miss circling the block for parking for an hour (yes, I've done it), nor do I miss having a family of mice for roommates as well as neighbors who treated our building hallway as a smoking lounge.

But I often have moments, especially when I am somewhere like, say, Costco, when I am pulling out of the driveway with my two kids in my minivan and I need a shower and I haven't gone to the bathroom in like five hours and I think to myself, how did I get here? I used to be hip! I used to go see Pavement and Sleater Kinney and go to work still hung over, back when I lived in Cool Northwest City. I used to shop at thrift stores and write in my journal every single day. Oh well. I have other things going on now. That's life.

I work full-time, I commute to above described city which can be exhausting, but I love my job and think working full-time makes me a better mom. I love cooking and baking, believe I have a touch of OCD, value a sense of humor above perhaps anything else and have a little too much nervous energy for my own good sometimes. Also, my mom died when I was 27 of cancer. She was diagnosed in February and died in May. This forever changed me and how I view the world.
Not to end on a depressing note, but thanks for reading if you've come this far. I hope you'll stop by again!