Being Friendly

So we went to Mamaw and Papaw's house yesterday for a belated Easter with family. I couldn't help but dress Kiki up a little bit take some pics with her and her first Easter basket (filled with candy Mom is gonna eat.)



She was a little fussy before we left, so I was worried that it was going to be yet another day where she cried the whole time. She doesn't seem to like their house; even I can't comfort her when we're there.

This time, I carried her in, without the carrier, let everyone say hi to her while I was holding her. She smiled at everyone -- she's beginning to do this now, instead of crying at people then turning to laugh at me -- and then I plopped her on the floor and surrounded her with her toys. Kipp and I took turns lying there with her for a little bit, and then?

She had a GREAT time! And everyone got to play with her a little bit without her pitching a fit. And for once I got to socialize with the adults. And it ROCKED!

The surprises didn't end there. At dinner time, we set up her high chair near the table. I made her a little puree of Easter dinner -- Papaw's famous green beans, and I put a little lamb in 'em to boot. Then I put little pieces of potato, lamb, and croissant on her high chair, with no real expectation that she'd be interested in it. She had never picked up Cheerios or those little toddler puffs off her tray before. But lately, I've been giving her baby crackers and teething biscuits every day, so she could at least practice feeding herself with big things.

Surprise!! She went to town on those little bits of food, getting all of it into her mouth! And she LOVED Papaw's beans (who doesn't?)

Anyway, all in all, a FABULOUS day. Yay!!

This morning, high on the success of last night's dinner, I put some puffs on her tray, and she ate 'em all, all by herself. Yay! The OT is gonna be so proud!

Speaking of which, when the OT was last here, she pulled out a stacking toy, the kind with the pole and the rings that go on it from big to small. Anyway, I went out and bought one and started working with Kiki on taking off and putting on. We got to the point where she was regularly taking the top one, the orange one, off with relatively no trouble.

So of course we have to show off for Daddy. I coached her and coached her, shooing away the dogs who were distracting her, telling her, "Kiki, take the orange ring off. The orange ring, Kiki." I'd take it off, show her, put it back on, and she just wasn't interested. Finally, I sighed, orange ring in hand, and told Kipp, "She was doing it before..." and before I could finish my sentence, she reaches over and pulls off the blue ring.

So, you know, I think she gets it.

Spring is in the air (finally!)

Just a quick break from the article so we can celebrate the sunshine! It's in short supply around here lately. For instance? Today it got up to the high 70's, was sunny, gorgeous, beautiful... and tonight, it is storming. Thunder. Lightning. Hard rain. Hopefully, the river will not flood again.

Sunshine! And Kiki's first swing!



Being the newbie mom I am, I forgot to put sunscreen in the diaper bag (it is in there now and will stay there until the end of time.) Being Missouri and March, her worst enemy anyway was the wind. So she got a little windburn, but it didn't seem to bother her, and it cleared up within an hour or so.

I started feeding her bites off my plate sometime last week, and now no one can eat in front of her without having to share. She sits with the dogs on the floor, and gives us pathetic, begging looks that completely outshine the efforts of the dogs.

The dogs are not amused.

Discussion of an article part 2

Moving on to the rest of the article. I aim to finish what I started!! Although days later, I'm not feeling quite so intense about it.

But, parents of children with special needs have been observed to be less responsive than are parents of children without special needs (Mahoney & Powell, 1988). Parental responsiveness and sensitivity are necessary to promote secure attachment among children with special needs (Atkinson et al., 1999; Clements & Barnett, 2002).

This was actually one of (many) fears I had when I was still pregnant and even a few months into Kiki's life, that I would remain emotionally detached from her. In retrospect, I think that was due to me not knowing what to expect from her in terms of emotional connection and attachment. It's not a mature reaction in any sense, but in some way I was afraid to get attached until I could be sure she was capable of becoming attached to me.

The same research that identifies increased stress and symptoms among such parents finds that the majority appears to cope well with these added demands, and remains relatively resilient. Many parents raising children with chronic health conditions and developmental disabilities report high satisfaction and enjoyment of their role.

Now I could list all kinds of weird, ignorant things I was afraid of even after Kiki was born. One day I cried all day because I was afraid she wouldn't develop a personality (she was exactly 2 and a half weeks old at that time.)

Some of the things I remember that went through my head while I was pregnant and while Kiki was newly born make me wince in shame when I remember them and some just make me laugh out loud. The fact is, as Kiki grew, and I spent time with her, it happened just like everyone assured me it would: we developed a very normal, natural mother/child bond that has grown stronger every day.

And personality? Oh. My. God. This is a child who, in my arms, will start to cry if a stranger approaches her and tells her how cute she is, then turn to face me and start giggling maniacally. She's fine with cuddling, as long as it's on her terms, and when she's done, she will let you know without a DOUBT that she wants DOWN NOW. She resists our efforts to coach her arms and hands into positions to do the things we want her to learn, but is quick as lightning when it comes to grabbing the things she wants, like our glasses.

As Yarnhacker puts it, the child is diabolical, and if we were to put our two daughters in the same room, they may just successfully plot to take over the world.

Crap, this will have to wait... she's learned just now how to climb over her barricdes and she's about to eat my power cord.

(All quotes taken from "Building New Dreams: Supporting Parents' Adaptation to Their Children With Special Needs", Douglas Barnett, PhD; Melissa Clements, PhD; Melissa Kaplan-Estrin, PhD; Janice Fialka, MSW, ACSW)

Discussion of an article part 1

So I'm planning to break this down into separate blogs, because I want to really delve into this. Consider it online therapy. I know, I'm not a celebrity going through rehab, so I don't make great reality tv, but it's my blog and I'll do what I want here.

We define adaptation as an ongoing process whereby parents are able to sensitively read and respond to their child’s signals in a manner conducive to healthy development.

First I want to point out that I'm no longer obsessing about any perceived attachment disorder. Really. I'll go into the reasons for another day, but honestly, I'm cool. She's cool. We're all cool.

The reason I included the above quote is because, well, I honestly believe I am able to sensitively read and respond to Kiki's signals. I know when she's hungry; I feed her. I know when she's tired; I cuddle her and put her to bed. I know when she's hurt; I comfort her. I know when she wants to be cuddled; I cuddle her. I know when she just wants to play; I get on the floor and play with her. I know when she's scared, or uncomfortable, or in pain, or just grumpy and unsettled. I can't tell you exactly if it's her facial expression, or the time of day, or the particular tone of her cry. I just know.

Reading this introduction and knowing what I know about my connection with my daughter buoyed my confidence in ways I can't even begin to describe. I've even decided that I need to repeat these things to myself in a daily mantra so that I remember to believe in my intuition and our connection.

Families with children who have special needs also experience more marital conflict and are less likely to be able to rely on prior social supports, as friends and family members are often unsure of how to help and may avoid becoming involved altogether (Powers, 1993; Speltz et al., 1990).

Our marriage, I am happy to say, has never been stronger. Kipp and I have always presented a united front on parenthood, and the addition of Kiki to our family hasn't changed that. Kipp keeps me balanced and sane, as well, constantly telling me that I'm a great mother, that Kiki's an amazing baby, how lucky we are to have her, and that we were destined somehow to be the family we are.

Now in respect to that last part, Kipp isn't really a big believer in fate or that kind of thing, yet on this particular point he feels quite passionate. I think that means something profound right there.

That's the plus side.

On the not so plus side. And I hesitate to get into this because I think it's a serious allegation to make, especially if you know (like I do) that no one will admit to it being an element in events at all. I want to say right up front that what I'm about to say is NOT any statement of fact in regards to other people's motivations or thought processes; it is only a reflection of what I suspect.

To begin with, I moved here from the west coast about three years ago. My closest friends live in California and Canada and my closest childhood friend lives in Kansas. I trust them all with every fiber of my being, and this doesn't apply to them at all.

In any case, over the course of the year I got pregnant, Kipp and I made some friends who we considered very close, a group of about seven other couples and ourselves. Now it was one of those Queen Bee dynamics, where everyone pretty much was a satellite of only one couple, which is an odd dynamic that I've honestly never been part of before. But that's really neither here nor there.

Anyway, during my entire pregnancy, we became closer and closer to the people in the group, to some people more than others. When Kiki was diagnosed, the support of the group was amazing. Everyone assured me that Kiki would be surrounded by love and support by all of them, and we were all family, etc. etc.

It's important to note that all but one of these couples had children, and that our older children were already part of that children's group. So we could hang with the adults, while the gang of kids did their own thing (supervised by an absolutely amazing babysitter who was the daughter of one of the couples in our group.) The ages of the group ranged from about 2 years old to the babysitter who was 16.

Emotional and hormonal that I was, depressed by the news of Kiki's condition, this group was an absolute life-saver. I felt hope in that Kiki would be extremely socialized, as we were in the habit of getting together with this group of adults and kids 1 to 2 times a week, and not just with adults, but with other children. I'd ready studies that showed that babies developed faster when surrounded by older children that they could learn from and mimic, and it thrilled me that we had this environment promised to her.

Then Kiki was born. I took her to visit the Queen Bee a couple of times and to see another woman in the group a couple of times. The latter woman I felt a particlar affinity to because her career dealt with care of disabled children, and I believed of anyone I knew, she would be particularly sensitive to my particular needs in the support area. We went to one group get together after Kiki was born.

And then two months after Kiki was born, we were booted from the group. And because it was a Queen Bee dynamic, we subsequently lost everyone else as well.

Now there was a major overlying event that initiated this that had nothing to do with Kiki, and we were one of four couples booted from the group within a six-month period following that. And at first I was so overwhelmed by the loss of everything I had depended on with that group that it didn't occur to me that any part of it could be related to Kiki.

But then I read a blog written by parents of a child with Down Syndrome where they had experienced something along the same lines, but had actually overheard some of their friends talking about their discomfort around the parents and the child because of the child's condition.

Reading that actually froze me in my tracks, and made me begin to wonder. Again, I can't make an actual accusation, but in my gut? I wonder.

We stayed close to the other refugees, as it turned out, and kept our amazing babysitter. As time has gone on, we have built a whole new support group, and have even better, closer, more supportive friends, and all of them adore Kiki, and none of them are in the least bit discomfitted by the situation. So we landed on our feet, and all is good, and there's no Queen Bee dynamic.

But there's not the same frequency of getting together, and there's no basic foundation of children as there was in the previous group. Which has simply prompted me to seek other avenues to pursue playdates and whatnot, so again, I am not defeated, per se.

Still, it took me a long time to recover emotionally from all of that. And in the process, we've become alienated from my brother-in-law and his wife, with whom we previously had been rather close.

Along the lines of family support, my own family doesn't live anywhere close. My mom is as supportive as she can be, but she's not here, and sometimes that depresses me. I've never been extremely close to my father, but I suspect -- and again, I may be totally selling him short -- that he's somewhat unsettled by Kiki's condition, and probably enjoys his position of distance, where he can enjoy that he's a grandpa without dealing with the reality of it.

My parents-in-law are fabulous and I love them to death and they dote on Kiki. However, we don't see them very often, and when she started making strange and she didn't get over it quickly, it's made them nervous to be around her.

Which, by the way, prompted this whole obsession with attachment. My mother-in-law, bless her heart, I know is trying to rationalize why Kiki is not warming up to her as quickly as we all want her to. Now I know a large part of it is due to the fact that whenever she sees them, it's at their house, and Kiki for some reason is not happy in their house. I know it's particular to their house because even I can't comfort her there, and I can comfort her anywhere.

The solution to the problem would be to see them more often, to have them come visit Kiki on her own turf until she's committed them to memory. However, this has yet to happen. My mother-in-law is not particularly healthy, and she rarely feels like getting out of the house, and my father-in-law is extremely busy with work and community work.

So in the end, I know my mother-in-law is bothered by Kiki's seeming rejection, and I know she's trying to rationalize what's going on. That's what prompted her to come to the conclusion that the reason Kiki is so insecure around other people, and so dependent on me, must be directly related to her Down Syndrome.

I can't find any proof of that. And anyway, I know my daughter. And I know she's actually fine with people she doesn't know as long as her exposure to them takes place within certain parameters. And I know she's not actually rejecting anyone; she's just going through a normal and necessary phase of development where she's learning object permanence and how to distinguish people from one another.

And noticeable attachment to a primary caregiver? Very good thing.

I shouldn't be as sensitive about this, I know, and I know I tend to blow things all out of proportion (who? me?) But sometimes it's just frustrating. I know what I want for my child; I know what I want to provide for her. But the people outside my control, I can't control, and it frustrates me no end.

(All quotes taken from "Building New Dreams: Supporting Parents' Adaptation to Their Children With Special Needs", Douglas Barnett, PhD; Melissa Clements, PhD; Melissa Kaplan-Estrin, PhD; Janice Fialka, MSW, ACSW)

Subtle Lines

I'm very open here about Kiki having DS, and I'm not shy about discussing it here. But in everyday life, I'm kind of sensitive about it. I don't want to draw attention to her disability; I don't want to draw attention to myself as the parent of a child with a disability. If we garner attention, I want it to be because she's so damned cute, people can't help but notice her.

I'm sensitive about the idea that I'm trying to court pity or sympathy with people if I bring it up or if I discuss it and the insecurities it brings up in me. I don't want pity. I don't even want to be set aside in a separate category of parenthood; even just writing "parent of a child with a disability" it sounds foreign to me, clunky, unwelcome, like it may describe someone else, but it definitely doesn't apply to me.

I'm sure this is more commonly referred to as "denial."

But I really do believe that I'm no different than any other new parent. So when I read things that are all supportive and fluffily reverent of parents of disabled children, it makes me nervous. I know on some abstract, gray level they're talking about me -- not specifically of course, but that I'm included in this morbid generality -- and I try to look at our situation through that filter, and I think, "This must mean that somewhere down the road, life is really going to fucking suck."

Because right now, in all honesty, life -- barring the day to day annoyances like finances, weather, in-laws, work, etc. -- life is so beyond more fabulous than I've ever imagined.

Life with Kiki is more glorious than I've ever imagined life with a baby would be, and I'll tell you, I have a fantastic imagination.

I won't at the moment go into WHY I spent tonight scouring through the internet for anything related to DS, separation anxiety, and ultimately attachment disorders, but to cut to the chase, I found this article http://depts.washington.edu/isei/iyc/barnett_16_3.pdf. It's REALLY long, and turns out I think to be something specific to a support group, but the first few pages that I read made me go, "Hmmm." Because I did recgonize myself, for the first time, in their description of a parent of a disabled child. And in some strangely indefinable way, it reached a part of me I didn't know was there, and it made me cry.

How many times have I written that now in this blog? Maybe if I keep writing it, it'll sink in. But it's just a label, in the end, and doesn't adequately describe or represent anything in my life.

I'll go more into detail later. For now, it's late, and I still have work and not enough time at the moment to indulge myself in philosophy.

Sweet Tooth

In celebration of her new tooth, I gave her a teething biscuit. She went to town on it, and I had to use a hose to clean up afterwards.



She was obviously fascinated by her tooth, too, as evidenced by how she fell asleep Friday afternoon, the day it popped through.



See? She's pointing to it in her sleep.

It appears there's another one coming through right next to it. Today she's running a fever, and she's PISSED OFF because I won't cuddle her all day. I need batteries for the swing, or as I am calling it this week, the Surrogate Mommy.

Well that explains everything.

So this last week, my perfect baby has been cranky and demanding. Mind you, I'm spoiled rotten by her, so her 5-minute tantrums 3 or 4 times a day have been VERY draining on me. I know. Pity me.

And my dog, my usually laid-back, sleeping from dusk to dawn anywhere near me dog, has just been PACING around her. Pace, pace, pace. Hover. Pace. Whine. Pace, hover. Check her out. Pace, pace, hover. ARRRGH. It's been making me INSANE.

Now, Kiki has not been feeling well. She has yet another ear infection, or the last on never really went away, and now she's on a different antibiotic that turns her poop blood-red. (Nifty, huh? You think you can handle any kind of poop that comes out of your baby after 11 months of training, and then you get RED poop. It's boggling.) So I kind of figured she just was sick-cranky.

And the dog, I figured the dog was developing some kind of maternal bond for the baby, and being concerned about the baby not feeling well.

It turns out I was mostly wrong on both counts.

Friday morning, when Kiki grabbed my hair and chomped on my chin, which is one of her favorite pastimes now, it HURT. The little vampire had sprouted a tooth OVERNIGHT. It's her front bottom tooth, and it hits the soft flabby stuff under my chin juuuuuust perfectly when she chomps for her entertainment.

Yay, tooth!! And ouch. I am a weenie when it comes to pain.

And the dog? Protective? No. The dog has figured out that if she is closer to the baby than I am, then she can clean up the baby's spitup before I can get there. Lovely.

So much for having a supernatural diagnostic sense. I guess I'm just normal after all.

How can this be comfortable?

This? Is how my baby sleeps.

Bonding

Last night I finally bit the bullet and attended the monthly meeting of our local DS parents' group. I took Kiki with me on the off chance that there might be other babies her age to play with.

Score! There was a little girl about 18 months old there in the day care room. I plopped Kiki in front of her on the floor. They stared at me; they stared at each other. Then they both leaned forward in slow motion and grabbed each others' noses.

Kiki was so engrossed in the new toys and little people her own size that she didn't even notice me leaving. The woman in charge assured me that if Kiki started crying, they would bring her to me.

Sure enough, about an hour and a half later, I hear an approaching cry. You know, I kind of assumed all babies sound alike when they cry. But I recognized Kiki immediately. I jumped up and made it to the door before they did! And of course, the minute she was in my arms, she was immediately smiles and giggles. The little monster.

But she did so good! One and a half hours in the care of strangers without incident! So I will continue to go to these monthly meetings. The information itself was great, and networking with other adults is always a good thing, but the socialization with other babies? Priceless.

And of course, I used the opportunity to aggressively pursue play dates. I collected numbers and names and all that. Because I am a pit bull mom or something.

We set therapy goals today for Kiki. She'll be starting occupational therapy pretty quick here. In the meantime, we're working on her tracking and passing smaller objects from hand to hand. I'm trying to encourage her to take things out of things and put them back into things. So far she just thinks it's fun to hear me cheer when she accidentally drops a ball into a cup.

She picked up a new game really fast. I pressed her nose with my nose and said "beeeep" like maybe twice, and now she does it. She'll lean forward and press her nose against mine or Kipp's as long as we'll "beeeep" for her.

And to truly prove she got the point of the game? Today during speech therapy, Ms. A put a large mirror in front of her on the floor. She said babies, when first introduced to mirror play, will generally just reach out for the mirror and touch at it.

Kiki scooted right up to it, grinned, and pressed her nose against it. "Beeeep!" I said immediately, because I am as trained as they come, and she giggled and did it again. And again. And again.

I think I'm on to something here. I'm not sure how to incorporate it into teaching her other things, but.... I think I'm on to something.

Updates et al

Oh how winter sucketh.

So last week, I took a friend and her daughter out on an errand, and while I was playing with Kiki in the waiting room, I noted some dried discharge on the outside of her ear. Not earwax; it had obviously been thinner before it had dried. So I immediately called the doctor and took her in the next day. Her ears are STILL too small for the doc to get a good look inside, but she got a good enough look to note that yes, Virginia, there was drainage. Welcome to another round of amoxycillin, her second in 3 months. Is that bad? I honestly don't know.

Then a weekend of breatkthroughs! In one day, she started smacking her lips -- if she just vocalized behind it, she'd be making "mamama" or "bababa" sounds. And she's mimicking what Kipp does: if he dances, she dances. If he smacks, she smacks. It's awesome!! For me? She smiles. Or giggles. I can't really complain about that in all good conscience, but darn it.

And then Monday, we all took sick. Tuesday, I was completely winded, and ended up at Urgent Care. I'm much better now, but it's taken a couple of days of Kipp pretty much taking a couple days off work just to take care of me, the baby, and all else. Which makes him appreciate me all the more, of ocurse.

Today, she had her first eye appointment. She has nystagmus, which we knew. It seems to me to much less pronounced and less fast than it was when we first noticed it, and the doc thinks it's possible it might self-correct. The cross-eyed part though will probably require surgery -- 20 minute outpatient surgery -- when she's older. For the moment, no need for glasses, but eventually -- well, Kipp and I are both near-sighted, and evidently people with Downs have a propensity for near-sightedness anyhow, so... foregone conclusion.

Tomorrow, she has an occupational therapy evaluation. The running joke is, "Do you really think she's old enough to work?" Heh. And no. Fine motor skills, people, fine motor skills.

I'm starting to work with her on the skill of putting her toys in a basket, as well as introducing her to books. Well, the book thing is planned today. I have strategically planted a fuzzy book in her play space, and we shall see how she reacts to it.

And that's the news for today!