Thursday, February 8, 2007

Trouble Bubbling Over

This is from an email I wrote to family and friends back in February of 2007. Corinne was 6 months old.

Hi everyone,

Remember me? I am the person formally known as "A", now known only as "Corinne's Mom" (and sometimes "Corinne's bitch"). Seriously, sometimes I feel like that is my only identity, since there are days where it seems like every waking moment is spent either feeding Corinne, entertaining Corinne, cleaning up after Corinne or being concerned about Corinne (more on that later). I have free time today only because Corinne is sick today, and is taking a good long nap. Is it wrong of me to enjoy this? Either way, it will probably take me 3 weeks to complete and send this email. The problem is, when she's napping there are about two thousand things I want or need to do. I don't even like wasting 20 minutes of nap time to take a shower and get dressed, so I've started doing that while she's awake, which means that I now shower with a toddler and a dozen or so tub toys while standing in a tepid pool of what I hope is only shower run off and not pee pee.

I haven't written in so long, I feel like I need to bring people up to speed. Many of you already know all this, but I included you anyway because: Tag, you're it!, Ha ha, now it's your turn to write!

The mural business has been steady, although has moved into the realm of toy boxes, growth charts and other small wooden things. So far most of my clientele have been my friends, but I am starting to get business from some of their friends, too. It's never going to pay the bills, sadly. I was discouraged to quote someone $120 for three painted totes (toy boxes) that I know will take me about a week and a half to do, which comes out to less than minimum wage per hour. Or I can babysit for one day and make the same thing.

Babysitting is the other thing I've been doing. I watch a set of twins who are a little over a year old, one or two days a week. We know them from our playgroup. Taking care of not one but three infants is a challenge, to say the least. (Anyone remember that the person formally known as A also hated kids prior to a mere couple of years ago? At least once a day I look at my life, my house full of toys and baby stuff, my social calender of play dates and cookie baking for the local valentine's day party, my new talent for making my voice sound just like Elmo, and I ask myself "this is not my beautiful life! How did I get here?!") Anyway, the twins are both really good babies, which only makes Corinne's less-than-sweet behavior that much more evident.

The other big thing in our lives right now, for those who don't know, is that Corinne is now enrolled in an Early Intervention program. I could write a novel on why (and no, dad, I'm not going to write a book, so stop asking!), but to summarize, my little angel has some coping and social issues. She's also not using as many words as she should be for her age, but that's less of a concern for us. I think she's just a "late bloomer". The behavioral issues are tough, though, I won't lie to you. Corinne doesn't like lots of things. Things like strange people (not necessarily abnormal at this age, except that this includes pretty much everyone who isn't Pete or I, and some days even Pete is questionable). She especially does not like other kids. If another child comes too close to the "Corinne-personal-space" zone, she bugs out, crying uncontrollably (hey, did I mention that I babysit a set of twins?! ?!). She also has a number of bizarre phobias. It started with beach balls, and then expanded to include rain coats, flags, her winter coat, her shoes, some of her sweaters... I could go on. She usually overcomes the fear after a couple days, but then something else takes it's place. Right now she is terrified of loofah sponges (the meshy kind you use in the shower). Go figure. On top of that, she tends to develop obsessions over other things. For along time it was balls (that one is finally waning), books (seems like a good thing, but it's a wee bit "Rain Man" the way she can flip through book after book after book). So she's a bit of a challenge, to say the least. Some days she is so much fun and so rewarding, and she makes me laugh every day. Other days she just whines and goes from activity to activity, spending about 30 seconds on each one, like she just can't find anything to make her happy. Those days are very, very hard. She has not been officially diagnosed with anything yet, and hopefully she won't be. Hopefully she's just quirky, but the what-ifs can certainly keep you up at night (things like ADD, and autism, for example). I got Pete a book called "The Highly Sensitive Child" and it does seem to describe her to a tee. Some kids, it seems, just have trouble with Sensory Processing, where for whatever reason life just kind of overwhelms them. We both think this is Corinne's issue. Now we just need to figure out how to deal with it.

I think I'm telling you all this so you understand why I wrote so regularly until right about when Corinne came along, and then I fell off the face of the Earth. Raising Corinne is now just a full time job, it's like working two jobs just to make ends meet. Right now I can't imagine how she'll ever go off to preschool and be away from me with other kids all around her. That's what Early Intervention is for. We're working on teaching her how to interact with other people and to make eye contact (something else she doesn't really do) and to start making other sounds besides "Bah!", which was all she said all day long, usually in a very annoyed sounding tone, since she turned one in August until just recently. She now says momma, which is wonderful and music to my ears, and daddah, and Bye (which she says when people come over, about 2 minutes after they get here, like "hey, sorry you can't stay. Ba Bye!") She gets a little better all the time, and mostly I feel optimistic, but sometimes I compare her to other kids her age who are developing "normally" and I get a case of the "why me's, why our baby?" I just wish someone could tell us that she'll be just fine and perfectly normal by the time she's 3 or 10 or as an adult. Then I wouldn't worry so much. But then I see something on TV about babies with cancer or other horrible health problems and I know we are so lucky.

Sorry to be so "heavy". Guess I just needed to vent a bit. Really, overall our lives are wonderful and I don't mean to sound otherwise. I actually started to write this just to jump in on the television discussion (we watch Lost and Survivor, and American Idol is a bit of a guilty pleasure for me). I was thinking how ridiculous it was that I haven't written for months and then I weigh in on TV, of all things. But then this Corinne thing just kind of took over, and 30 minutes and a "Fred-length" email later and here we are. If you've read this far, thanks for listening! And I wrote the whole thing in one sitting! And she's still asleep! (Should I go make sure she's still alive? No! I won't! Just enjoy it, A, and stop obsessing. The scariest thing is how much of ourselves Pete and I see in some of her quirkier behaviors. Poor kid, she never stood a chance!)

OK, on that note I'm signing off. I apologize for any typos. It really does scare me that I can't type a coherent sentence anymore, when I use to write for a living. It's like my brain is atrophying from lack of use. I feel like that book "Flowers for Algernon".

Anyway, there's laundry and dishes and projects to be done. I will try to write more often; it does feel good to be incommunicado again. I'll keep everyone posted and hopefully this too shall pass. I have this fantasy where I say "and then we found out that Corinne's problem was __ and so we did __ and now look at her! You'd never believe how she use to be! And that was a mere __ months ago!! " Oh well, a mom can dream.
Ba Bye for now,

Two months later, in April, Corinne was diagnosed with Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS). I like to think of it as "Autism-Lite". She's not full-blown autistic, but shows many of the characteristics of autism. It's funny because I was very aware, as most parents were in this time of rising autism rates, of the "warning signs", but I don't know. I must have been in denial or I didn't have a good comparison or I was picturing Rainman or something. We just thought she was "intense". Rereading this email now, it seems so obvious to me.

Sunday, February 4, 2007

That Which Doesn't Kill Us

An e-mail to my best friend, written in Feb of 2007. There's so much I could write regarding those first few months of 2007. I feel that this email kind of sums it up.

Hi chickie,

I know, it's been too long since we chatted. It's been a really bad couple of weeks for us. It started with Corinne being sick and just absolutely miserable and whiny and not eating. Then, last Friday she had her 18 month check-up, which was awful. First off, she is still just 21 pounds and now in the 10th percentile for weight. It may just be because she barely ate for a week, but the doctor wants her back in a month for a re-weigh to make sure she is gaining. Then she had to get two vaccines which has literally traumatized her. She was so upset by it that it took us three days just to get the band-aids off, and now she gets hysterical when you take her top off or even if she sees her bare arms. On top of that, she had blood drawn which just made it worse. They wanted to test her for allergies to milk, soy and gluten, based on what I was telling the doctor. We also have an appointment with a pediatric gastrointerlolgist to rule out intestinal issues. The results on all the bloodwork were negative, so now we don't know.

The biggest news and dark spot in our lives right now is that her pediatrician also told me at the appointment that she thinks Corinne may be autistic and wants to have her evaluated by a pediatric neurosurgeon. Pete and I have talked about this possibility for a few months now, but something about hearing it from the doctor was just devastating. I came home and cried for about two hours. It has been such an emotional rollercoaster this past week, coming to terms with it all. Some days I think she is and some days I almost convince myself that she's not. Her case worker, Laura, for Early Intervention, seemed surprised by the pediatrician's suspiscion, and she works with a number of autistic kids. She pointed out a few of the ways that Corinne has been improving just in the past month. But she can't legally give a diagnosis, or even her opinion, really. I want to think that she has a better handle on Corinne's behavior, since she has spent an hour a week with her for the past 6 weeks, but I just don't know. My mom came last weekend and Corinne was just awful with her. She wouldn't go near her, not even to read a book. She'd take food from her, but kind of like a wild animal. She'd grab it and back away. If my mother made a move toward her she'd shake her head and make her "no" whine. The third day she finally sat in my mother's lap to read a bedtime story, something she use to do willingly with anyone, but she was still whary or her. It was heartbreaking. I felt bad for my mom and also so hopeless and frustrated. In many ways she is getting better, but in some ways she's getting worse. Pete and I went to dinner last night (left her with a babysitter who said Corinne would have nothing to do with her) and talked about it a lot and we both believe in our hearts that she is autistic. Maybe low on the spectrum, but we have felt since she was about 5 months old that she was different from other kids; that something just wasn't right with her. So now we're in limbo. Her appointment for assessment isn't until June 4th. I have her on the waiting list, but I guess that long of a wait is pretty typical. Pretty nerve wracking when you're talking about a disease that is best dealt with the earlier the better.

So that's basically been our entire world for the past week. I feel like I'm going through the stages of grief. Right now I'm in the anger stage. Why us? Autism is now seen in 1 in 150 kids. I don't even know 150 kids, so why did mine have to have it? Pete and I have had to really re-evaluate our plans for our family, and change our expectations for the future. For one thing, we are not going to have any more babies, something that we had been planning to try for in the spring. This gene pool needs to be shut down. I couldn't deal with two autistic kids, or even a healthy, normal one along with Corinne and her demands and needs, which may very well get worse.

Once again, sorry to be so depressing. Overall we're doing OK and coming to terms with it and hoping for the best. On the bright side, she has been great this week. Just happy and silly and overall in a great mood, so that gives us hope that even if she is autistic, she may still be able to lead a relatively normal life. And we may as well.

OK, almost time to put my angel to bed and unwind with Pete. We're trying to make relaxing a priority, especially for poor Pete who is also having a very stressful time at work, on top of everything else. That which doesn't kill us...

Talk to you soon,