Sunday, March 23, 2008

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)


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