I hate stuttering; I love my stutterers

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I loved The King’s Speech and strongly recommend it. But if you spent 10 minutes with my 4 year old you would learn that stuttering doesn’t always arise out of some sort of social self-consciousness or timidity that can be overcome by strength of will. People who feel sure of their “right to speak” (as a 4 year old is!) still stutter.

The same is true of Duncan.  He has no self-consciousness about the way he talks.  Thankfully, his stutter is mild and gradually improving  so perhaps he never will.  His stuttering began gradually–a stealthy slide into repetition, until one day I realized that he had been stuttering for months.

Kate’s descent into dysfluency has been sudden. One week last fall it was clear that she had started, this spring week has been a calamity; every day she is less fluent than before. No one understands the cause of stuttering. What has prompted Kate’s speech crisis? We will never know. Who is this thief stealing my children’s ability to speak? When will they get it back? All mysteries.

Often making progress on stuttering takes a lifetime of work and therapy; other times stuttering spontaneously resolves. Girls are less likely to stutter and also more likely to cease stuttering spontaneously. Kate currently attends Talking Time, a special district-sponsored once a week speech preschool for working on articulation (pronunciation).  The teacher informed me this month that they don’t work with fluency (stuttering issues) so if Kate doesn’t improve over the summer, she won’t be eligible to attend in the Fall. I was tempted to say something bitter and defensive like: “Stuttering isn’t contagious!  She won’t contaminate the other children!” But instead I just reminded myself that she has made excellent progress on articulation and probably won’t even need Talking Time’s help in the Fall. (The question of whether our home elementary school’s speech program will be helpful for her stuttering is something I’m less sanguine about.)  Two years ago, I would have thought the level of vocabulary and articulation she manages today almost impossible for her. I wondered whether she was making any progress at all. Two years later I can say that things change. Here’s to change for the better!

Normal

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?

What I didn’t learn in Kindergarten

  1. How to color well
  2. How to cut straight
  3. 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.

She’s “goge,” how can we help?

Goge Kate

Kate tells us that she is “goge.” Now, in general, her speech issues seem to have really improved. Her vocabulary has expanded considerably. She has even blurted the occasional five word phrase. Hooray! Articulation, however, continues to be a struggle. Our new problem: Kate is constantly “goge” and we don’t know what that means.

Here’s what we’ve figured out so far:

a) Goge is not good. You do not want to be goge. If you feel goge (or is it goke? goque? gogue?) you also want to whimper.

b) Goge is related to cold. When Kate fills her cup with ice and holds it for a while (she adores ice), she becomes goge. She will tell you that her hands are goge. You can verify this by feeling them. Yep, they’re cold.

c) Goge is not the same as cold. Temps have been hitting 80s and 90s here and Kate is goge inside the house (too much airconditioning?) and outside.

d) Kate is most likely to be goge when she does not want to nap.

e) Boredom and feelings of dislike can also trigger goge-ness.

e) Hands, teeth, bottoms, all sorts of body parts can be goge.

f) “Me goge” should not be confused with “Me gog.” “Me gog” means that Kate has transformed into a four legged creature who “oofs” and hops across the floor. Being gog is apparently very funny, being goge is nothing to laugh about.

Children and Consequences

Taking stock of my day—

I have three children.

1. Child #3 (Kate)’s speech therapist came for a home visit.   I explained that I was pleased that she is saying a few more words and phrases, but frustrated that I have gotten nowhere with “articulation practice,” where I am supposed to help a 2 year old practice the sounds that are difficult for her to make.  (Do you see a problem with this plan?)  I may be a bad person, but I actually felt pleased when said 2 year old first covered her mouth, then turned around and put her bottom in the air after the speech therapist pushed her to make the “k” sound a few too many times.  [It isn't just me!]  Ultimately #3 hid and refused to say goodbye.  Oh yes, speech therapy is going well.

2. I asked child #2 (Duncan) to empty the dishwasher.  He said he was hungry.  I said, “Great!  Because I have a special treat for you right after you get that dishwasher finished!”  It was more than three hours before he got any food because it was more than three hours before he was ready to empty the dishwasher.  I suspect he might have eaten some of the trail mix that was supposed to be the special treat while I wasn’t looking though.

3. I didn’t take child #1 (Amelia) to Shakespeare for Kids although she desperately wanted to go, because she spent the entire day doing her chores and homework.  Shakespeare is supposed to be a reward for doing her chores and homework well and quickly.  We are not there yet.

One huge success today was that we found some large grid paper at Office Depot.  [Amelia explained to me during a review of her homework that the reason I cannot read her numbers is because I am not trying hard enough, but I don't know, I think it might be something else!]   The smaller quad ruled squares were too small for Amelia to fit her numbers in.  I think the large grid paper might represent a significant boon to her future in math.  It is important for your math answers to be readable in settings other than standardized tests!  Unfortunately, Amelia hates the paper. She is no fan of anything that would make her look different from the other kids. I hold out a weak hope that once she sees it’s useful . . .

Should a nursing mother get extra time? (Part II)

So, I thought the case of Sophie Currier was open and shut, but then I did a bit more digging. Hers is not the ideal test case for advancing the cause of nursing mothers. Because she has dyslexia and ADHD the exam board had already granted that she take the normally one day test over the course of two days. It’s one thing to ask for a concession, it may be another to ask for concession on top of concession. So much for that. Anyway, even if Currier is a poor standardbearer (and I’m not sure that she is, I’m simply not sure that she isn’t), her case raises interesting issues.

One thing that surprised me was the venomous tone of so many of the comments on her blog. The mommy blogs I read are all of the type that attract sympathetic commenters. People comment because they agree with you and want to say something nice. Currier’s blog is wallpapered with people who wanted to tell her what a whiner she was, what a disgrace to working women she was, what a disservice she was doing for nursing mothers, how stupid she was, how her litigiousness was the root of all ill in our society, what a poor physician she would be, and how foolish she was to choose to have children during medical school. Whew! Ouch.

All of this fills me with 100 different blogposts I would like to write, but as always, I don’t have time.

So, two questions:

1. When one has a disability, when should one ask for a concession or accommodation? What is the force of “should” in the previous sentence? When is it morally proper to ask for/expect an accommodation? When does it make sense to ask for an accommodation from the perspective of life efficacy?

This issue is becoming very real for me because my daughter has a disability. She has very poor fine motor control. This makes her handwriting nearly illegible. She can write legibily but only with great difficulty and extremely slowly. Unfortunately, her challenges are beginning to color her entire school experience. I don’t want her to decide that she hates school or even worse to conclude that she simply isn’t very intelligent. From that perspective, it makes sense to give her the wings that keyboarding allows. She can type much faster than she can write. She will never write well. Why not let her start typing everything now? It’s pretty clear that if we push it, her school will make accommodations that allow her to avoid most handwriting. But avoiding handwriting now, when her struggles are the greatest, means she will need an entire lifetime of accommodations. She will be unable to fill out a job application without a computer or help from another person.

So: When is it best to soldier through a problem, doing one’s best in light of disappointing results? When is it best to throw in the towel and acknowledge one’s limitations?

2. How should the availability of birth control color how we view timing of motherhood and working motherhood decisions? Many who left comments on Currier’s blog felt that she had no business planning pregnancies for the lifestage she did given the demands she knew her program would present. These weren’t people urging Currier to become a SAHM, but rather people opining that if she was serious about being a physician she didn’t have any business shorting that side of her life in order to bear children.