Thursday, February 17, 2011

Unloading It

When I go for awhile with no real post, or few with any major substance, it usually means that I have so much swimming in my head that I'm overwhelmed by the mere thought of writing it out. But, in those times, what I probably NEED to do most for my own mental health is the very thing I'm struggling to do . . . write it out, unload, get it out. So, since this is -- no doubt -- one of those times, here goes.

- Evaluations/Doctor's Appointments

B and I agree . . . every time we start to feel comfortable in our place of acceptance, on our "new normal," we have some other doctors appointment or evaluation to think about and to cause us anxiety. This month, it was our bi-annual speech assessment/progress report, a physiatrist appointment, and our first appointment with a developmental pediatrician, who we are seeing to gear up for Sam's transition from the Regional Center to the school district for services when she turns three (and who we are also required to have an evaluation from every 6 months as part of Sam's center-based therapy/preschool program). I can't help it. No matter how "good" or "right" things feel, leading up to these types of appointments, I struggle. A lot. I've likened it to being pricked with something pokey over and over just when I've gotten comfortable. And it sucks. Big time. Evaluations - they suck most of all.

When I start thinking about the suckiness of it all, I get mad. So very very angry. I try to fight it, I try to stuff it, but I end up having some pretty nasty internal dialogue. I just feel angry that things are so hard for MY girl. Angry that the most know-it-all-smuggest of our acquaintances seem to be living life with all just falling so smoothly into place. Like they have the marriage, the parenting, the working . . . all of it just figured out. So then I start thinking things like, "Oh, you think you've got it all figured out? Well, I DARE you to sit in a tiny room for two hours having your child 'evaluated' and not fall into a weeping mess on the floor or throw up. Dare you." "I dare you to go through evaluation after evaluation and NOT want to just run home, crawl in bed, under the covers with your little family and just escape from all the madness. To not want to just run away (with your family) to a deserted island free from therapies, evaluations, etc. to just 'be.'" OR "oh so you've got balance, well, try eight therapy appointments a week . . . balance that b*$%ch!" I wish I was making that last one up, but I'm not. I'm not proud of these thoughts. And, I know I need to move past them, but I think owning them (here I am, owning them!) may be the only way to start to get past them.

The thing is . . . the evaluations have gone well as of late. Her speech therapy report said (again, same as six months ago) that her receptive language is age-appropriate and she's made incredible gains in expressive language as well. She says new words all the time that make me and B go "did she just say ___?" It's really quite amazing. Articulation (that's speech, not language) needs work, which we are all working on.

And the developmental pediatrician's evaluation also went well. When we walked in, I actually thought "ohmygod this is going to be a disaster." We walked into a tiny room where Sam had never been before (with an evaluator she'd never met), they plopped her in a chair, put some blocks in front of her, and told her to stack them. She promptly picked up two blocks, handed them to me, and said, "Mama!" She wanted me to stack them. That's pretty classically Sammie B if you know her. Pretty stinking cute, but not what the evaluators were looking for ;o)

Anyway, though, she warmed up. Quickly. And frankly, wowed them (and me) with what she knew. Every six months Sam goes through ANOTHER evaluation -- with her OT --for her EI services. The assessment tool they use is the Bayley Developmental Assessment, and she always scores with a slight cognitive delay, even though every doctor we've seen has said "cognitively, she's age-appropriate." So, even though they've told us that, it has been worrisome. I've thought she "gets" everything. But I wondered if I was just in denial, or if the doctors were wrong b/c admittedly, they made those assessments from short visits with her, not true developmental evaluations. But, the thing with the Bayley Assessment is that the supposed "cognitive" tests all involve motor skills or vision issues - like putting together puzzles, shape sorters, etc. And, I was convinced that that was why Sam scored how she did, and that the scores weren't truly reflective of her cognitive abilities. As I've mentioned before, when I ask Sam where each piece to one of her puzzles goes or where each shape goes in a shape sorter, she can always show ME where it goes, but she can't always put the piece where it goes herself . . . her clumsy little hands can't do it. That's a part of this journey that just stinks. To know she knows absolutely what to do, but her clumsy little hands (or vision? both?) keeps her from being able to (yet). It just stinks.

Well, the developmental pediatrician first assured me that I was right on that front - the Bayley is notoriously a test that fails to account for (or remove from the equation) motor limitations when assessing cognitive abilities. He used a different tool - one designed more for kids like Sam who have motor skills issues, and guess what? We don't have the actual scores yet, but he said she will likely score slightly ahead of her age on cognitive abilities. Ahead. I'll take it.

She is, of course, severely delayed in the motor skills department. While this isn't news to us, it still "stings." I had a long conversation with the developmental pediatrician about what this means (his approach is one of 'how do we best get this child into the educational environment she'll need to succeed?' sort of thinking) . . . and its going to be a challenge. A challenge to make sure that Sam's "cant's" (or not yets!) don't inhibit her "cans." To make sure she's not underestimated mentally because of her physical limitations. To have her in a place where her educators realize that if her processing time seems slower, it is not because she doesn't "get" it, it is because she's using so much of her brain power/energy to do the things the rest of us take for granted . . . like holding our bodies steady in space, focusing our eyes, etc. So there you have it. To the people I've felt like have underestimated her in the past - damn you. To the people that likely will in the future - damn you too. And damn it that my sweet bean has to work so stinking hard to do what others take for granted. So there you have it. Right now, I'm just a little mad at the universe.

The developmental pediatrician agreed with me . . . Sammie B is both a complicated and magical little girl. Our complicated and magical little girl.

- And so then there's this . . . Hopkins Test Results

Remember how the doctor at Hopkins was oh-so-confident that none of the tests would show anything? I walked away so sure he'd be right. But he wasn't. One small group of tests came back "inconclusive," so we have to have those re-done. They were some of the metabolic ones, but she had the same tests at 18 months old and they were normal. So, the Hopkins doctor thinks the "inconclusive" ones this time were probably just a fluke - a product of her diet being a little "off" while we were traveling (no doubt it was . . . she's such a picky eater and with the gluten-free thing, its pretty much all-cookies-all-day when we travel).

And, Sammie B has a chromosomal abnormality. Two of them. Each of which is so small that it is on the border of what would even be reported as an "abnormality," and one that is on a spot on her chromosome (not telling you which one! the geneticist specifically told me that because the variation is so small, nothing on google would possibly be applicable. So there.) where there aren't even any genes. And there are no other reported cases of either abnormality, so really, no clue what they mean. The genetic counselor explained that the testing we did on Sam is so new, and so very very detailed, that it could capture an "abnormality" on unaffected people. Like if you go digging enough, you could find something "abnormal" on anyone. And, because the testing is so detailed and new, doctors don't always even know what the abnormalities found actually mean. These abnormalities could be what is causing Sam's delays, but probably not. They could just be flukes. Actually, the counselor said she's 99% sure the first abnormality is not what's causing anything (since there are no genes on that spot of the chromosome anyway), and nearly that sure on the other one, but wants to see mine and B's results first.

Surprisingly, when we got the genetic results, I felt so at peace. Like, okay, so that's how she was made. No biggie, and not life-threatening.

So, plan of action: we (me and B) have genetic testing done and sent to Hopkins. If either of us has the same abnormality(ies), we chalk it up to a fluke thing passed down and assume its NOT causing her delays. If we don't, then we just move ahead . . . we still won't know if that is what is causing her delays and it doesn't matter. AFTER we've gotten those results, we will also re-do the metabolic tests on Sam with a lab here. So, a little disappointing. Disappointing that the visit to Hopkins has, at least for now, created more questions than answers. More worry. More stress. When I spoke with them regarding the results (and after googling myself into a frenzy), I asked them if it changed the prognosis. They were so positive and optimistic about Sam's future when we were there . . . so I said, "if either of these tests turns out to mean something, does that change the prognosis?" And she said, unequivocally, "no."

So, I'm not really angry about the Hopkins tests. Angry that we have to re-do some (and have Sammie B poked again). Angry that this has to be part of her story, but otherwise, nothing changes. We just keep on keeping on. I guess part of me, if this is a chromosomal thing(which really, we may never know) feels a little angry with myself that I've wasted energy wondering if I did something while I was pregnant that caused Sam's delays, or wondering if I had done something, anything, differently, if things would be easier for her. Angry that some people in our lives fueled those worries in me unnecessarily. Everyone is a damn expert, right?! Damn that too!

- Work

Work is busy, and that doesn't change just b/c I'm in a difficult spot personally. It is hard to work 15 hour days (which is literally what would be required if I wanted to get it all done) when my heart feels so heavy, but I'm doing my best. I like the case I'm working on, and the people I'm working with, so like with other things, I'm just going to keep on keeping on. But, I do (often) wish I could just leave work in the middle of the day, go home, grab Sammie B and Mr. B and crawl into bed and hide from the world.

- Marriage is hard.

Have you ever read the divorce statistics? Dismal, right? How about the divorce statistics for parents of special needs kids? Staggering. I want B and I to beat those odds more than anything else in the world, but that doesn't mean it is going to be easy. Life is not easy. And I'm angry about that too.

-Our New Nephew!

My brother and his wife had a baby two weeks ago - Christian. He's worthy of his own post, but that will have to wait. I haven't met him yet, but he's super super cute, and I already love him. Unfortunately, he hasn't gotten to go home yet :o( and my brother and his wife are on the same NICU roller coaster ride we were on ourselves two years ago. It brings back so many memories -- long, tense days, intense ups and downs. Intense worry. Feeling like those damn doctors and nurses are holding your baby hostage . . . . and just wanting to go HOME. I remember coming home each night and sitting in the rocking chair in Sammie B's room and just sobbing. Wanting my little girl to be in my arms, in that chair, in HER room, more than anything. So, keep that little man in your thoughts, and hope for some good news soon. We need good news around here. And my mom - my mom deserves some good news. It's been an intense couple of weeks for her.

* * *

I guess more than anything, even more than the anger, . . . I'm just tired. Ahead, Behind, Delayed, Advanced. None of it really matters. Happy, safe and loved, that is what matters. Sammie B is so so happy. So so loved. But, I just feel like we deserve a break. A break from all the worrying, a break from having to work oh so hard for things. That's the part that gets me down. Wishing there was a reprieve from the therapies, the evaluating, the assessing. The worrying.

Unloaded. Now, moving on . . .


Amanda J said...

((Hugs)) You are amazing. I can't begin to know how you manage to do it all, but you do and you rock at it.

Gina said...

I wish every single parent of my students was exactly like you. You are the picture perfect parent of a child with special needs.

The tests...oh, man, I could write a book on them. My motto is that standardized assessment results are not indicative of a child's ability. We give cognitive tests that are language-based to kids with language disorders and then call them Intellectually Disabled. It's bizarre, really.

And being beyond frustrated with people who seem to have it all? Because of L's food allergies and correlating weak immune system, I get it (to a very small degree, but I get it). And the marriage-is-tough thing? I get it too.

Hang in there, sister. You are doing a phenomenal job.

Home View said...

Maggie Keegan Gross is my daughter. She was diagnosed with arthrogryposis at birth. I didn't see the expressions of concern on the faces of those who aided in her delivery but her father did. He was devastated. He imagined the worst anticipating a life of severe disability for her. Despite the guarded future outcome delivered by the various doctors who visited me in the hours after her birth I remained optimistic. There were years of therapy, operations and evaluations. I even thought maybe I should get a job a Kaiser because I was spending so much time there. It took several surgeries before she walked at a little more that two years. She started kindergarten at three at one of the special schools that LAUDS provides has for the severely disabled so she would be able have more physical therapy
As she got older we worried that have friends and whether she might be made fun of. In elementary school she wore a protective helmet because she would fall easily and couldn't raise her arms up high enough to protect herself. Maggie never complained about her limitations.
Your child will take her strength from you. She'll get stronger and so will you.
Jo Keegan Faubush

Momttorney said...

Oh Jo, I cannot thank you enough for this comment. It was just what I needed today, particulary as we've started looking at the LAUSD's special preschools . . . just not the path we envisioned. But thank you for the reminder . . . the reminder that Sammie B is writing HER story and as long as we "keep on keeping on," its sure to be a fabulous story.

If she turns out to be half as brilliant, funny, charming, and confident as your girl, I'll be happy mama indeed.

Thank you thank you. From the bottom of my heart.

Julie said...

Man, I hear you-I really, really do. I can so relate to being angry at friends who just.don' We're right there with you with 8therapies/wk. I wish I knew how to balance it-I don't. Bella also had a chromosome abnormality (a duplication). I worried and stressed about it for months until we got our results. In our case, my husband DID carry the same duplication, so it means nothing.

All this to say-I hear you on the anger and being tired. I keep thinking this is a nightmare I will wake up from eventually. You are not alone-I know you and I love our kiddos more than anything. For that reason alone, we'll keep going, even though it's so, so not fair they have to work so hard. HUGS...