Best Of
Links
Categories
Archives
Search
Subscribe
It’s been a good, tough week here at Pfamily Headquarters. Very tough, very good. The good news is that Kate’s spinal tap results came back and everything was normal as was her bloodwork. So, after more than $10,000 in medical tests–not hyperbole–we know that 1) She hasn’t had a stroke, 2) she doesn’t have a brain tumor, 3) there isn’t a hole in her heart, 4) she doesn’t have multiple sclerosis, and 4) she probably doesn’t have a neurotransmitter deficiency. This is very, very, very good news because I didn’t want Kate to have any of those things. The only problem is that she still has the tremor and we still don’t know why. This may be no big deal– an ”idiopathic” or unexplained tremor may simply continue–odd, worrisome even, but no ultimate harm done. However, it is too early to tell if/how the tremor will affect her handwriting and other fine motor abilities.
Since November I’ve been intellectually and emotionally consumed with worrying about Kate and the upcoming test or appointment or whatever. Now the tests and appointments are at an end. My anxiety has not yet met it’s end, but I hope it soon will. It would help if Kate’s tremor would lessen or disappear the way a person’s sore throat pain starts to ease as soon as they hear that it’s not strep. Unfortunately, it doesn’t look like that is going to happen–I guess Kate didn’t get the memo.
Aside from my continuing anxiety about Kate, another tough thing about this week was the consecutive 504 appointments I attended at Duncan and Amelia’s schools. (A 504 appointment is a meeting with your child’s school in which you make a plan for dealing with the child’s disability). Duncan’s appointment was for speech therapy. Although I’ve been through the 504 process before, I was disturbed anew when I received the letter to schedule the meeting. I don’t feel like a parent who needs to meet with a special education liaison! I don’t recognize my child as being in the disabled category: someone who “has a mental or physical impairment that substantially limits one or more major life activities.” Nonetheless, Duncan can’t make a few of the sounds six year olds should be able to make. More significantly, he has a whole word stutter. (Have you ever heard of a whole word stutter? Rather than repeating the initial sound, a child with this type of stutter repeats an entire word over and over. Before Duncan, I had never heard of it).
Of course, lots of kids are sent to speech therapy. It’s no big deal. I went to speech therapy as a child, and I say “lllll” very well now, thank you very much. I guess it’s just a little tricky in that I am used to academic tests in which one hopes to be in the 90th or 95th or even 99th percentile, so to hear that Duncan tests at the 12th percentile–it seems so low! But then I remember that this is just his ability to make the ”k” sound–not a measure of his abilities as a whole. However, then I remember the stutter and that seems like it might be a bit bigger of a deal. Will he ever be easy to listen to? The speech therapist says that they will teach him to take a breath and slow down before he speaks. Could that solve it? Waves of worry wash over me and then recede. The tide comes in, it goes out, it comes in again.
The fact that I find receiving these 504 letters, with their mentions of “special education,” disturbing doubtless suggests that I need to adjust my thinking regarding special education. However, recognizing this doesn’t make it so.
Amelia has had a 504 plan for years. Her 504 specifies that she be “accommodated” by being allowed to use a keyboard in class. She types everything because fine motor tasks are a challenge. Her 504 meeting this morning was a bucket of fun. Her good teacher was pressing the district to offer Amelia more “services” because although typing resolves many of her academic-related fine motor issues, the teacher worries that Amelia will have trouble accomplishing important basic life tasks (cutting meat, tieing a shoe, cutting her own fingernails). I understand this concern well, as it mirrors my own, but the notion that playing with putty (my cynical description of occupational therapy) twice a week for twenty minutes will help—-I’m painfully skeptical.
The whole meeting felt like a wound being reopened, poked at, examined. It reminded me that Amelia has real problems that do and will affect her life. They aren’t going to go away. I had wanted to forget that. Just as I’d like for Kate to wake up tomorrow without the tremor and for Duncan to be able to spit out his story on the first telling, I would like to see Amelia’s fine motor problems vanish. I know, I know, if wishes were horses . . . , but couldn’t my kids just be “normal” kids without the issues? Sometimes the unusualness of their respective problems bothers me– as though, if I could somehow meet another three year old with a tremor, or 6 year old with a whole word stutter, or 10 year old who struggled to tie her shoes, everything would be so much better.
What is normality and when does the moniker apply? Are most of us disabled? Do almost all of us face some sort of deficit that leaves us at a level less than the norm? Some issues are bigger than others. I recognize that parents whose children have cerebral palsy or Down syndrome, for example, face difficulties far more daunting than the minor frustrations and disappointments I have faced with my children thus far. Also, from the outside looking in, it appears that some families have it all: they appear smart, athletic, healthy, etc. But I know that none of us will truly escape challenges in this life. And although there are many other sorts of challenges, the challenges we face often arise internally: social deficits, medical problems, mental problems, learning disabilities, etc.
It is likely that to be normal, one must be abnormal in some way. Can we take comfort in the normality of our abnormalities?
The principle: Mom is not going to fix different foods for each family member. We are all going to eat the same thing. Mom decides what that is. [For my defense: I am willing to listen to timely suggestions, but I didn't receive any suggestions before everything was prepared today. For my prosecution: By "fix" I mean reheat leftovers].
The scene: Mom is eating meat and potatoes for lunch. Duncan: May I have some [brown] rice for lunch? Mom: No. You can have what I’m having: meat or potatoes. Kate: [Enthusiastically points at an orange]. Mom: No. You can have what I’m having: meat or potatoes.
Result: Mom finds herself ridiculous. My children ask for brown rice and fruit and my response is: it’s red meat, starch, or nothing? What kind of mother am I anyway?
Ta-da!
My little boy is so big. He will be six in less than six weeks. I’m not ready. He is so excited to get older, to grow up, but I miss the sweet, obedient little boy he was before. I know that there is a lot to look forward to in an older child–Amelia has taught me that–but I also know that there is a younger child who will soon mostly be present only in pictures. (Note to self: Take more pictures!) I will miss him.
Duncan and I had a rollercoaster day today. We had a wonderful morning enjoying one of our favorite shared tasks: searching through piles of cookbooks in hopes of finding the perfect recipe. (Duncan is the only person I know who likes to look at cookbooks as much as I do). Duncan’s criterion was chocolate, mine was chewy. Finally, we found the January 2009 Cook’s Illustrated recipe for Chewy Chocolate cookies. We made them together and they surpassed our hopes: They were indeed chocolatey and truly chewy! A recipe breakthrough.
The afternoon brought an ugly metamorphosis. Duncan was so badly behaved–screaming, crying, carrying-on. It was frustrating after our nice morning. This wasn’t a day that warranted me turning inward and saying I must pay him more attention. He was badly behaved for no reason at all.
Fortunately, by evening, he was a happy little fellow again, entertaining himself and playing with Kate, glorying in the role of wonderful big brother. He does it so well! Then he exulted in the loss of his first tooth, giddy at the milestone met. Growing up can’t come fast enough for him. I just wanted to hug him tight and say, “Don’t leave me! I’ll miss you.” I did say something about not letting him get any older, and he just laughed and laughed. Silly mama.
I don’t know if she actually did; I couldn’t see. But Pdad thought so. After she got Kate’s IV in, I did hear her say several times, “That’s why I’m an adult nurse!” I think she actually did a great job. The IV went in on the first try. We all held our breath–last week Kate had to be pricked a third time after a vein collapsed, so we didn’t want to tell her that it was over and she was done, until it was over and she was done. But the vein performed and the test continued.
The nurse was under pressure. Kate is young (not yet three) and little. We had mentioned last week’s three tries with the IV. It seemed like a whole room of people was looking on. I couldn’t have put a needle into Kate, but the nurse’s tenderness still surprised me. None of us want to hurt a defenseless little person who has to trust us.
At an earlier point yesterday, the lights were off, the high tech monitor was on, and the specialist studied it. I lay next to Clara in the bed, trying to give comfort with my presence and my touch, wishing I could see, but knowing that I wouldn’t be able to understand anything I saw. Pdad and the two technicians watched the specialist. I could see her face as she studied the monitor. I wondered if she would be able to see what she needed to. I wondered whether she would be distracted by all of us watching her. I wondered if she would have to order further, more traumatic tests to be able to see better. I wondered if Kate would have to be sedated again today, whether it was truly safe, and whether we were making the right choices for her. As the specialist silently scanned the screen, I wondered whether she had the ability and the experience to make the right call. I had never met her before that morning; she seemed both competent and compassionate, but I didn’t yet know if she deserved my trust.
The day before, our pediatrician had called me from home on his day off to recommend these tests. I was baffled. Our medical odyssey began with the intermittent tremor we noticed in Kate’s hands and arms. Last week the focus was her brain. Thankfully, the MRI didn’t reveal any obvious bleeds or tumors. So why were we now looking at an echocardiogram of her heart? The pediatrician had a difficult task. He wanted to reduce my anxiety by explaining that there was no cause for concern and that the tests likely wouldn’t reveal anything that wasn’t normal. At the same time, he wanted to communicate urgency for performing the tests. The contradiction gave me anxiety.
A too-brief midday conversation with Pdad confirmed our shared mental status. The pediatrician wants more tests. Are we certain that seeking more medical intervention and study is the best course for our daughter? No. Are we certain that it isn’t? No. Do we trust that our pediatrician knows the best way to proceed? No. Do we trust that he cares about her and wants what is best for her? Yes. Do we trust him and go forward? . . . ?
It is curious to me how our situation as parents in the hands of the medical system mirrors Kate’s. To a degree, we are helpless. We can only trust or not trust. Our situation is different than Kate’s though, in that we know a little more, and we have the aching burden of decision by proxy. Perhaps that nurse could shed a few tears for us too. Perhaps she already did.
P.S., Kate’s heart looks great! It is normal and healthy. There are no holes. She was very brave in getting her IV and was miraculously cooperative and even sleepy through all the procedures which allowed her to avoid sedation. We appreciate your prayers. We are very thankful for good test results so far. The plan now is to simply wait for our appointment with a pediatric neurologist near the end of January. The good test results have done nothing to explain her tremor, so the mystery and a reasonable dose of anxiety continues.
My 10 year old daughter moved to a new school this year. She has a great teacher and she claims to be much happier at her new school. She finally feels like she fits in and she loves all of the projects they do. The problem is, school is stressing her out. Another problem is that her school is stressing me out.
In retrospect, it is obvious to me that Amelia needed a change last year. If your child is reading a couple books a day during school hours, something is wrong. Kids need to be challenged. If there is no challenge, changes must be made. On the other hand, if a child has so many challenges at school that she doesn’t have time left for other activities, or if she has little time for being a 10 yr old, something might be wrong there too.
It is tricky to be the parent of someone who has the option of being challenged too much or too little, but no obvious third option. I’m not the teacher; I can’t adjust the homework load. I can’t make the curriculum just a bit easier for her. I can help her to streamline her life, I can try to help her see that she doesn’t have time to do everything demanded at school, retake her science test until she gets a perfect score, swim every afternoon, go to chess club once a week, go to Activity Days (a bi-weekly church group for girls), enter the Reflections contest (PTA arts program), and study for the spelling bee, etc.
The problem is it makes me sad to encourage her to scale back on the non-school activities that are also an important and enjoyable part of her life (and let me be honest: our life. I am mourning the loss of time to study spelling, because it was something I really enjoyed doing with my daughter). For example, dropping swimming would save the most time, but after her fight to make the swim team, I would hate to see her leave just when she is reaping the rewards of her hard work.
Because of the stress that her homework assignments put on our family, I am often tempted to encourage her to go back to her old school. It can’t be worth it! I say. But despite the stress she evidences and the anxiety I feel, how can I send her back when she says she is happier at her new school and wouldn’t go back for the world?
I know that many have counseled putting the computer(s) in a common area of the house or even a high traffic area. Pornography is truly a scourge. It’s obvious that the information children might share over the internet needs monitoring.
On the other hand, Pdad works at home and has his office in an isolated corner of the basement so that I don’t have a painful, always-shushing-my-children kind of life. He is on the telephone most of the day and the tones of little voices–raised either in happy play or in sibling ire–just do not provide a good background for his important business calls. Also, he travels, spending many nights in hotels. Realistically speaking, if his resolve to avoid pornography depends on a fear of family members walking by, he’s in big trouble, because usually there won’t be a family member walking by. It isn’t possible to un-isolate his computer unless we are prepared to move back to company headquarters.
So–no-brainer right? If we can’t move Pdad’s computer, we can’t. But what about the kids’ computer? Children are still developing their judgment. They need to be monitored. We handled this for a while by having one computer with the internet (use for children by permission only) and one for homework. But what made sense in theory didn’t work in practice. How do we look up words? At Merriam-Webster.com. How do we check which books are in at the library? On their internet site. How do we research which new books we want? At Amazon. How does Amelia find images of the Sphinx for her big school project? With Google.
So for a while now, the kids have had relatively unfettered access to an internet-enabled computer in the family room. The problem: our family room is a very public part of our house. It is where all the toys are. It can be very difficult to focus on your homework when smaller monkeys are whooping and hollering and having fun, or even targeting you for distraction. Because of Amelia’s motor issues, she must type all her homework on the computer. How do I get her the quiet she needs while also having her computer in an area where it can be monitored?
Again, where is your computer and why?
- How to color well
- How to cut straight
- How to glue (quickly, effectively, wrinkle-free, and without making a mess)
I didn’t enjoy being the laggard in my kindergarten classes. But somehow I thought that as I got older and other subjects took the pride of place that coloring, cutting and pasting enjoyed in my kindergarten classes, my poor skills wouldn’t matter so much.
Sigh. Hellooooooo parenthood: Scissors and gluestick, we must renew our acquaintance.
My daughter’s teacher assured me that of course we should work on her project together. She could learn by watching me. As Facebook chatter began to reveal that other parents were beginning to finish up the same project with their kids, I found myself filled with kindergarten angst once again. What if my picture (display) isn’t as good as the other kids’ (parents’)? Will the teacher think I’m stupid?
It is pathetic that after 20+ years of schooling I still have something to prove. Kindergarten angst runs deep. Here’s hoping that Amelia’s next big project will involve writing Socratic-style dialogues and that I don’t hear the phrase “display board” for a long, long time.
1) Yes, I know she is (still) adorable.
2) Yes, I know it will grow.
3) Yes, I know it will be easier for me to take care of.
But I am still sad. I don’t know how this happened. I took her in to get a little trim to tidy things up a bit. I thought maybe they could undercut it a little to make it turn under at the bottom. How did 5 inches off and full layers happen?!
-
- Kate before
-
- Kate after
But not mine?!
On the radio I just heard that some people are concerned about President Obama’s plan to address public school children next Tuesday. I thought, well, there’s always a minority with strong and vocal views. And then, at almost the same moment, I came across a note from Amelia’s school. They do not plan to show the speech to the children. Their first reason makes sense, they don’t have the bandwidth to stream it without interruption. Their second reason left me incredulous:
This will [also] give us a chance to review the speech so we can select segments that would tie directly to our curriculum. If we do decide to show a clip in the future, parents will be notified to give their permission or to have their student participate in an alternative assignment.
“If we do decide”? You’ve got to be kidding!
[I should not be blogging because I am still so stirred up, but I just can't help it.] This is something that I don’t understand at all. Perhaps some of my more conservative readers could explain this to me, because I can’t make sense of it. My child’s school needs to preview the speech in which the President is scheduled to “challenge students to work hard, set education goals, and take responsibility for their learning” because this may or may not tie in with their curriculum? I have a suggestion: [Such-and-Such] Elementary if you find something about “challenging students to work hard, set education goals, and take responsibility for their learning” that does not tie in with your curriculum, then consider changing your curriculum!
Also, am I to understand that the principal and teachers at my daughter’s school, who are completely unelected are going to substitute their judgment for that of our elected President? Now I understand that a lot of people feel education decisions need to be made at the local level, but this is ridiculous.
Apparently, there’s still the possibility that they will show a “clip” in the future. The entire speech is only twenty minutes! I wonder, does my daughter’s school plan to pre-review the local sports teams that will visit during assemblies this year? Will they edit those presentations for what ties directly to the curriculum? Or perhaps local sports stars have more legitimacy than the President of the United States?
I am shocked and saddened. I really like my daughter’s teacher, but to me this episode is a huge black mark on my view of her new school. On Tuesday, I will be keeping her home to watch the President’s speech. And Duncan’s school? I am calling the principal to ask his plans.
Updated to Add: I spoke with Duncan’s principal. His elementary school (same school district as Amelia’s elementary school) is going to show the speech to all of their 2nd-6th graders. They are allowing parents to attend the presentation with their children if they wish or to opt out and have their children do some other supervised activity. Since there is such a controversy, I think the school is probably doing the right thing. On the other hand, I think it’s ridiculous. They won’t be sending opt out notices for the rest of the assemblies they have this year. And the other outside groups coming won’t be offering them a transcript of remarks ahead of time either.
The principal thanked me and sounded very grateful that I had called. Apparently, he had been talking to people who do not believe the speech should be shown at school before he talked to me and was glad to talk to someone who didn’t think he was doing the wrong thing. It is important not to be silent, even if you agree with the position your school is taking.
Alternate title: Don’t get out much?
Duncan’s answers to his kindergarten spotlight form:
My favorite place to go is “the grocery store with cars attached to the cart.”
[Please don't waste your time worrying about his deprived life. In the past few months I have taken this boy to the library, This is the Place State Park, the natural history museum, the Bean Museum, the art museum, the ocean, his grandma's houses, two different swimming pools, and several different parks. But dedicated as I am to child self-expression I dutifully noted down his answer.]
I am “happy.”
My favorite color is “shiny red and shiny yellow.”
I like to eat “Lucky Charms.”
I like to “run.”
My favorite candy is “marshmallows.”
My favorite toy is “Lightning McQueen.”
My favorite restaurant is “The Golden Corral.”
My favorite holiday is “Christmas.”
I have 5 people in my family.
They are “not very nice. I wish I lived by myself.”
[Actually, despite my aforementioned commitment to child self-expression, I declined to write that down. Was that the wrong move? I pointed out that his class would be hearing this and waited.]
They are “The nicest of all is my Daddy.”
Did I mention that I took him to the grocery store that has cars attached to the cart yesterday? But I didn’t get the cart with the car attached because it is too difficult to maneuver? Daddy, I was told, always gets the cart with the car. Do you think this could be related?