I’ve been thinking about this for a while, about beginning the process of potty training Finn. I confess that I’ve been a little intimidated by the prospect, not really knowing if it’s going to take some measure of endurance on my part beyond what potty training my other kids took.
Let me just say first that I don’t recall potty training my other kids with any fondness. I don’t think Kevin or Lilah were particularly difficult to get toilet trained, but I do remember Joey and the twins being especially taxing, and I remember thinking at the time that potty training was worse – was harder – than the nightmare of “sleep training” little ones. None of my kids were potty trained before age 3, with the exception of Lilah who potty trained at age 2.
So in that regard, Finn’s not yet behind schedule.
I don’t claim to be an expert on potty training, on child behavior, or even on parenting. After really thinking about the mechanics of potty training, here are what I see as the factors that have to be taken into account:
- The child must be able to tune into his or her body’s signals and interpret those signals (What does that sensation I have mean?)
- The child must be able – that is, to have the physical (muscle control) and developmental capacity – to control the bodily impulses that those signals announce (Uh oh, I have to go potty, but I need to hold it for a few minutes until I get to the toilet.)
- The child must be willing to participate in this whole process.
- The parent/caregiver must be in a position to exercise consistency, patience, and perseverance.
These, I think, are the main factors that have to be taken into consideration with any child, typical or atypical. If even one of these components is not there, you’re looking at a situation that isn’t going to ultimately be successful.
So how do these factors fit in with a kid who has Down syndrome? Well, developmental disabilities generally require more of everything – more patience, more consistency, more perseverance, and it’s likely that the child will take longer to get there – to develop the physical and developmental mastery over his or her bodily signals and functions, as well as the willingness – than his or her typical peers. While some children with Down syndrome do successfully potty train as early as age 2 or 3, it’s not uncommon for a child with Down syndrome of 5 or 6 to have not yet mastered it. Knowing this actually gives me a little courage, because I know that if our first attempt fails, or even our second or third or fourth, it’s not really anyone’s failure – not Finn’s and not mine – it’s just the way it is, and he will get there eventually.
I’ve been thinking for months now that we would give potty training a first shot over the kids’ Winter Break, because it would be a time when I could stick close to home and exercise the consistency needed to sit Finn on the toilet at very regular intervals. I say “first shot” because in all honesty, I’m trying to approach this with an open mind, meaning I accept that it’s probably going to take multiple attempts.
So yesterday was Day 1. I tried the old potty chair we still have from the other kids, but found that the opening is too small and Finn would have to be positioned exactly right on it in order to do his business. I also remember the twins starting out with the potty chair and then being terrified of the “big potty.” Better to go straight to the big potty. So I got a potty seat that fits onto the big toilet, especially for little bums: Bumbo Toilet Trainer (very ergonomic, just what Bumbo is known for).
My first inclination was to put Finn in underwear and put him on the potty every 20 – 30 minutes throughout the day. After he peed on the couch twice in an hour, however, I realized that I can’t follow him around all day cleaning up pee, so I ended up putting him in a Pull-Up. I know Pull-Ups are a big no-no for potty training, and that current wisdom has it that you have to go cold turkey, but I’ll be honest: I really don’t believe that Finn has any notion of the difference between underwear and Pull-Ups, so I don’t believe this is going to make or break us, and it might save my back and my sanity a little.
We learned the “potty” sign and to say “potty” (Finn’s sign looks more like a wave you’d give from a Rose Parade float, and “potty” sounds like “poppy,” but hey, approximations are totally fine). Finn was willing enough to sit on the potty, and all told by the end of the day, he peed in the potty twice and pooped in the potty once (I’m pretty sure the pooping incident was pure luck, as I happened to catch him just as he was on the verge), and lots of praise and hoopla. There were also lots of accidents, but this was no surprise.
Today he seems a little less willing. When I sit him on the potty, within 20 – 30 seconds, he’s saying “All done,” without having done anything in the potty. I’m making him sit for at least a couple of minutes, but (a) my experience yesterday indicated that if he’s going to do anything into the toilet, it’s going to be within the first few seconds, and (b) I don’t want to force him to sit on the potty longer than he’s willing to sit and thus make the pottying experience a negative one for him.
So I will keep on keepin’ on for the rest of this week and see how it goes. If this attempt is not successful, we’ll try again over Spring Break, and know that at least we made some headway in potty awareness.
I heard someone moving about in the house last night, so I got up to investigate:
Soooo . . . the rumors are true, then. Huh.
But seriously. In the wee hours of the morning – no sign of sunlight yet – I heard a man coughing out in the living room. I clutched at Michael’s arm under the covers and hissed, “I heard something! A man coughed!” Suddenly, Kevin appeared in the doorway of our room. Oh my god. When did my son start sounding like a man?
So the kids had us up at the crack of dawn. We held them at bay as long as we could, but eventually we had to shake the sleep off and get the party started.
Everyone was thrilled with their haul.
Here’s me at 15 weeks along:
After a mostly lazy day, we had our traditional Christmas dinner of filet mignon and cheese fondue, followed by chocolate fondue for dessert.
Merry Christmas to all, and to all a good night!
After two tortuous weeks that have felt more like a year, Michael had another scan this morning – this one a more detailed, high-resolution, diagnostic scan to figure out what it was his initial scan picked up.
We were extremely grateful to get a call from his oncologist within a few hours (we were afraid we might have to wait until tomorrow or even next week to hear anything). The word is, his doctor is convinced it’s not cancer. He looked at the scan and the report, and he consulted with a radiologist and a surgeon, and none of them thinks it’s cancer. It’s most likely scar tissue and/or the residual effects of the terrible post-surgery infection he had in April. Michael asked him what the next step is, and his doctor said, “Enjoy the holidays.” He does want to follow up with more blood work in about six weeks, and possibly another scan in six months just to monitor, but the official word is that Michael remains in remission.
To say we are relieved and thankful doesn’t begin to cover it. It’s like we’ve been holding our breath, living under this dark cloud with terrible possibilities looming before us. It’s felt like life is on hold, and the tension has impacted all of us, including the kids, even though the kids have had no idea that this has been going on (with the exception of Kevin – he’s too old and intuitive to keep many secrets from at this point). It’s been difficult to feel the holiday spirit, and even though my ultrasound last week was such good news, I haven’t even been able to allow myself to get excited about the baby. ”My husband might have cancer again,” repeated over and over in my head.
Now we can move on. It’s time to celebrate.
I Live With Peter Pan by Missy Vaughn
A softcover book aimed at children, the author, who has a young son with Down syndrome, explains that she was inspired to write this book when faced with explaining Down syndrome to her own children. She apparently hit upon the Peter Pan comparison – a boy who never wanted to grow up . . . .
Read the rest of my review here.
We visited with Michael’s oncologist this morning, the first step in following up on the questionable results of his recent CT/PET scan a couple weeks ago which I wrote about here.
I remember when we got that first phone call almost three years ago from the doctor who discovered and diagnosed Michael’s cancer and would eventually surgically remove it. It’s a phone call that changes you forever – both the patient and the spouse. In a matter of seconds, you lose a certain sense of innocence, a belief that certain terrible things can’t touch you. Suddenly you are reeling, the breath knocked out of you, and you wonder if you’ll ever be able to breathe again. And from then on, the sense of safety you once knew is forever altered, diminished.
The next step was to meet the oncologist for the first time, who would explain to us the staging of Michael’s cancer and a plan of action. I didn’t want to go to that first appointment with Michael. I was terrified of the news he might give us, and a cowardly part of me thought that by not facing the oncologist – who seemed to hold our very lives in his hands – I could insulate myself from whatever terrible truths there might be. My midwife is actually the one who made me go with Michael. ”You have to go, Lisa,” she told me. ”You can’t let him face that alone.”
So I went, and although the news was bad (stage 3 cancer which would require major surgery and a year of treatment), it wasn’t as bad as it could have been. I instantly fell in love with Michael’s oncologist. He was warm and down to earth and spent lots of time with us, and when he said, “You don’t have a foot in the grave yet, Mike,” in his New York accent, I truly had to stop myself from getting down on the floor and kissing his feet through my tears.
There was a part of me that didn’t want to go to the appointment this morning either, although I knew we weren’t going to get any definite answers. But I was afraid of which way the doctor might lean – would he seem extremely concerned? A little concerned? Not at all concerned? Would I be able to trust whatever he told us and not feel like he was trying to bullshit us or shelter us? Would he take one look at Michael and listen to his symptoms and get a grave look on his face?
But coward or not, I went. And honestly, there’s just not a lot to report. Dr. A took some blood (routine), did a quick physical exam (and didn’t find anything of concern), went over the results of the CT/PET scan (ambiguous), and asked Michael questions about how he’s been feeling.
Here are the questionable/possible issues of concern:
- Recent CT/PET scan revealed an area of concern – specifically, higher than normal metabolic activity – in Michael’s liver. The liver is a location to which the type of cancer he had does often metastasize.
- Michael has been experiencing pain in his upper right side where the liver is located.
Here are the positives:
- All of Michael’s checkups – which happen very regularly – have been good.
- Although his recent scan revealed this area of concern, it’s ambiguous at best, and could be consistent with a number of things besides cancer. The CT portion of the scan did not reveal any obvious lesion.
- Michael’s appetite and weight have remained stable and he generally feels fine.
- He’s not jaundiced, and although he is experiencing pain in his upper right side, there is no abdominal distension, nor could his doctor detect any enlargement of the liver by physical exam.
The bottom line is that we just don’t know anything at this point. His doctor is “underwhelmed” by Michael’s symptoms, but thinks the situation warrants further investigation. So Michael is scheduled for a more detailed, diagnostic scan Thursday morning. With any luck, we’ll have at least some preliminary answers before the weekend.
I’ve lost a lot of sleep and shed a lot of tears over this. Suddenly our whole life seems in a state of upheaval and turmoil again, and we have no answers at the moment. Possible pictures of a future with Michael ill and incapacitated by chemo again, or a future with Michael gone – and me with another baby on the way! – fill me with terror.
But that’s getting ahead of things. One step at a time. Right?
One day last week, Kevin came home from school and relayed a story to me about his math teacher apparently losing his temper with one of his classes (not the class Kevin has with this teacher, but a class a couple of his friends have with him) and saying to his class, “What, are you guys retarded? You’re acting like a bunch of retards!”
Kevin was upset, and upon hearing this, I was upset. A teacher? A high school teacher? Resorting to name-calling? Using a slur? Really?
What to do? There is a part of me – a big part of me – that feels this huge responsibility to Finn in situations like this – situations where I could actually do something. I know I can’t change the world, but when situations like this arise, it feels like a dark and ugly, and yes, cowardly thing to do to just let it go. So I was torn. Kevin and I talked about it, and I asked him if he would be okay with my sending an email to this teacher and to the principal and treating it as an opportunity to educate. Kevin wanted to make sure the story was actually true first. The following day he confirmed the story with other students in that class, and he gave me the okay to send the following email:
As a parent of one of your students, I am extremely concerned about reports (from multiple sources) that you called one of your classes yesterday collectively “a bunch of retards.” First of all, name-calling by a teacher in any context is inappropriate. Furthermore, “retard” is a hate word. It’s a slur, no different than many other words that we have, as a society, fortunately moved beyond. You may not have considered your audience, and the fact that there actually may be a number of your students who are in some way personally touched by someone with autism, Down syndrome, or another developmental disability, and to have such a connection makes such language especially demeaning and hurtful, especially coming from an authority figure or a role model.
This seems like a good opportunity to educate. I am sending a link to a video of a speech my son, Kevin, gave to his middle school student body and their families two years ago. I hope it will give you pause, and that you will more carefully consider your words in the future.
cc: Cathy Gach, Principal
I sent it on Friday, and by yesterday (Wednesday), I had not heard a word back from either the teacher or the principal. What did I expect? I don’t know . . . some kind of acknowledgment? Yeah.
So last night I resent the email to both of them with this note:
Last Friday, December 9, I sent a letter (copied and pasted below) to Mr. Jafari, with a copy to you, concerning inappropriate language Mr. Jafari apparently directed at one of his classes last week. I have received no response or acknowledgment from either him or you, which greatly concerns me. Perhaps there has been an oversight. In any case, I would like to think that this is something FUHS would take seriously, and would take steps to educate its staff about tolerance and finding more appropriate ways to deal with frustration than resorting to name-calling and slurs.
cc: Mr. Jafari
This morning I got this response from Mr. Jafari:
Dear Ms. Morguess,
Thank you for taking the time to write about something that concerns you. This email acknowledges your email. I did not respond to your earlier email as it did not ask for a response. Please also note that this statement was in jest and I immediately told my students that I am just joking. It was never indented as a slur or a hateful statement. I agree with you that such a statement should never be made in earnest. Since some students or a student did not take the statement as a jest, this calls for more prudence.
Again I would like to thank you for bringing this to my attention.
Oh! So he was joking! Well Jimminy Cricket! That makes all the damn difference, now doesn’t it? He was kidding! I mean, gosh, to say it in earnest would be just wrong. But in jest? Perfectly okay! Just like calling someone – let’s see . . . let’s say, for instance, a classroom full of high school freshman – “a bunch of fags” or “a bunch of spics” would be totally fine as long as it was said in jest, right?!
I about choked when I read that email. It’s one of the two standard excuses: (1) “I was kidding,” and (2) “I didn’t mean it like that.” Damn pussies. Cowboy up and cop to it! I’d have a lot more respect for someone who just said, “You know, I was out of line, and I’m sorry. Won’t happen again.”
Later in the morning my cell phone rang. It was an unfamiliar number, but the location from whence it came told me it might be this very teacher. How did he get my cell phone number? Well, no mind. More importantly, did I want to talk to him? I didn’t have a speech prepared, and I hate being caught unprepared for confrontation like that. But I put on my big girl pants and answered the phone. It was, indeed, the teacher.
He was very nice, though clearly he was doing damage control now. He basically reiterated what he had said in his email, that he was KIDDING! I said to him, “So if I called you a nigger, it would be okay as long as it was in jest?” He gave me a big, hearty laugh and said, “No, no, of course not!” “Why not?” I asked. “Um, well, that’s just wrong,” he said. “Right,” I said.
He told me that he likes to get down on the kids’ level and use their language to connect with them. He really said that! I told him, “You’re not supposed to be one of them, and you’re certainly not supposed to be encouraging them to use derogatory language. You’re supposed to be a role model.” Jesus H. Christ. Why am I having to tell a college-educated freaking teacher this? That he’s supposed to be a role model, not a pubescent, surly teenager?
He apologized and assured me that he would be more conscientious of the language he uses in the future. I guess that’s all I can ask for, right?
Later in the day, the principal called me. I have to say that I am really, really disappointed that she wasn’t right on top of this situation – or at least that she didn’t try to give the appearance of being on top of it. Like Mr. Jafari, she told me that she didn’t respond to my initial email because I didn’t specifically ask for a response. Seriously? I mean, I would think in this type of situation, some sort of response would be a given.
Anyway, she was nice, she said that she had had a talk (today – not until today!) with the teacher, and he understood that what he had done was inappropriate, yada yada yada.
Today was the day, the day I’ve been both anticipating and dreading for weeks. The day of the ultrasound.
And I’m going to foist pictures on you, because I know that looking at someone else’s ultrasound pictures is almost as exciting as looking at someone else’s vacation slides!
My wonderful, awesome, amazing midwife was there for the festivities. I was nervous about what the ultrasound might reveal. I told the tech (who did my ultrasounds with Lilah and Finn as well) in no uncertain terms that I was not interested in knowing about soft markers for anything. I truly don’t want information that’s only going to lead to speculation. All I wanted to know was: (a) does the baby appear to be viable, and (b) how far along am I?
Well, the baby indeed appears to be viable. Little heart hammering away, brain formed, all major parts accounted for, and it was shaking and shimmying in there. The magic of seeing one’s baby for the very first time, it just never goes away.
And surprise, surprise, apparently I’m about a week farther along than I thought – she put me at about 13 and a half weeks, with an EDD of June 15.
Now we just need good news about Michael and we can get back to the business of living happily ever after.
Things are a little surreal around here lately. The holiday season is upon us, and there’s that feeling of cheer and goodwill in the air, but underlying it is a simmering anxiety for me.
Michael had his annual CT/PET scan last Thursday. Last year when he had it, we got the results within a day or two, and it was the best news a cancer patient could hope for: “no evidence of disease,” which in simple terms means remission, no sign of cancer. This year there was a lot less anxiety leading up to his scan; all his checkups have been good, and there’s really been no cause for concern. Not that either of us were taking it lightly this time, but I think we felt pretty confident that the results would be the same as last year: no evidence of disease.
Well, as it turns out, the scan revealed an area of concern. ”Uptake” it’s called, and it has to do with certain metabolic activity that could be consistent with any number of things: injury/healing, infection, and yes, cancer. It is, in fact, in an area that was directly hit by infection after his emergency surgery back in April, so it could very well just be that. The CT/PET scan is not diagnostic. It’s really more of a screening, so right now it’s a huge question mark that’s weighing very heavily on my mind. Michael’s oncologist is not treating it as urgent, but he does want to follow up before the end of the year – meaning blood work, very probably a diagnostic scan, and possibly a biopsy. Michael is buried at work right now preparing for a hearing before the U.S. Supreme Court next month, so it’s unlikely he’ll even be able to get in to see his doctor before next week. The waiting, the not knowing, the imagining the worst (though I’m trying so hard not to) is killing me.
Cancer: a friend for life.
I’m also having a lot of anxiety about my pregnancy. Hearing the news about Michelle Duggar losing her baby at 20 weeks last week really threw me for a loop. I’m only a year younger than she is, and all along I’ve been unable to shake the feeling that I have no business being pregnant at my age. Ever since I took that first pregnancy test all those weeks ago, there’s been a part of me that has expected to miscarry, and I’ve had a hard time allowing myself to get excited or attached. And yet . . . when I saw my midwife a couple of days ago, she pulled out her doppler and said, “Let’s see if we can find a heartbeat.” Well, I wasn’t expecting this little gift, as she’s more a fan of the fetoscope, which typically doesn’t pick up a heartbeat until much later. I guess she sensed that I needed some reassurance, though, and she found the baby’s heartbeat with very little trouble.
Wow, there’s really a baby in there!
There’s really nothing like it, hearing that sound for the first time. I just started crying, I couldn’t help myself.
It was reassuring, and tomorrow we’ll get our first glimpse of this little muffin, as I’m having the long-awaited ultrasound to date the pregnancy.
And yet, even with this little piece of reassurance, I know there are no guarantees. I feel like I’m never going to be able to rest easy with this one.
I think I knew in my heart when I wrote this recently what was inevitable. It’s kind of like a bad relationship that you tolerate and try to make work, and portray to everyone as fine, until you finally get to the point where you’re ready to confess that it just isn’t working out. You know that once you confess the hard truth, you have to do something about it.
I think I had reached the point where I realized that we had made a mistake getting a dog like Twinkle. See, I’ve had dogs my whole life, but I’ve always had big dogs – whose temperaments generally seem to be quite different from Twinkle’s. I thought having a little dog would be fun, and easier than a big dog – everything would be on a smaller scale, right? Wrong. As it turns out, Twinkle has a pretty typical little dog temperament: high-strung, hyper, with a good dose of attitude. She ended up being very high-maintenance in more ways than one, and in the end, I don’t think she was any happier with us than we were with her. It just wasn’t a good match.
It happened pretty quickly: I started looking for rescue organizations early in the week, and found one in our area that specializes in small dogs, particularly Maltese and Yorkies. I called them, and they turned out to be a mom and pop operation – a retired couple registered as a non-profit organization, who take small dog breeds into their home until they can rehome them through a stringent screening process. They were willing to take Twinkle.
I told the kids, and honestly, they didn’t seem all that upset. None of them have ever really bonded with her except Finn. Kevin gave me attitude for about an hour, which really pissed me off because he really never even liked Twinkle much, but I think at his age he seems to have a need to find things to cop attitude about. Whatever. The other kids were like, “When can we get a new dog? A better dog!”
Today was the day. I took her to the vet on Friday and had her groomed and all her shots updated. After I fed her this morning, I began gathering all her things – toys, her bed, her food, bowls, etc. I kept thinking she must have suspected something was up. Finally it was time to go. Michael and I loaded her and her things into the truck, and off we went. We found ourselves in a beautiful, upscale, heavily treed neighborhood. The couple welcomed us into their home where we spent about a half hour chatting while Twinkle nervously trotted about trying to make sense of what was going on. We signed a paper relinquishing her, and that was that.
Saying goodbye made me a little teary. Suddenly she looked very sad, crouched low to the ground with her ears and tail down – forlorn and rejected. The woman asked us, “Are you sure?” ”Yes,” we both said. And we left.
I feel like we did the right thing – I know we did. But it still feels shitty. I feel like we failed on some level.