Leo's daycare called me yesterday afternoon to report that he arrived from his other school with a nasty (my word, not theirs) looking scrape, a rug burn, perhaps? It's on his chest. The only reason they noticed it (it's in a place covered by his shirt) is that he was scratching and rubbing it.
I'm not trying to be melodramatic. It's really ugly. It's about the size of Leo's palm and it is a raw, red abrasion. There was no mention of it in Leo's communication book (from the other school). Considering the school nurse there has been known to write me about Leo having a hang nail (I'm not kidding), I figured if they saw him so much as stumble, there would have been notation about it. Nothing in the book.
Which led us to a game of 20 questions last night. There was Erin and I, sitting on the floor next to the bath tub, Leo standing (the water was stinging the abrasion, apparently).
Leo, did you fall? Did someone do that to you? Leo where did you get the owie?
Leo just kept saying "bee," which is his word for pain (after being stung by two bees last summer). He also said "hot" which is troubling, because it does look a bit like a burn, but how in the heck would he have been burned without anyone seeing?
Of course my first call this morning was to the other school. I spoke at length with the nurse. She agreed that it's not a pretty scrape, checked with all of Leo's therapists and teachers and no one knows how it happened.
It just breaks my heart, to not be able to communicate with Leo about this. To know that he was hurt, and to not know how it happened.
Damn you, speech delay.
Tuesday, March 31, 2009
Friday, March 27, 2009
Default Setting
I lay awake last night wishing I had taken my last post down. I'm not going to, but I'm going to take a little break from the Leo harping. I just have to.
Last night Erin had the kids while I went to a parent volunteer group meeting (we mostly work on fund raising at Leo's school). According to Erin, Leo was an angel and helped her with Ellie, getting her diaper and helping dress her. He even took his medicine without a fuss (disguised in yogurt smoothie, but still).
The thing about Leo (and this never ceases to amaze me) is his default setting is Good Mood. Seriously. He is just for the most part, pretty happy. Not to further all those "they're such happy children" notions but really, if given the right set of circumstances, Leo is more than content. And I'm not talking ice cream sundaes and no school. I'm talking a bowl of oatmeal and his little sister sitting next to him. I'm talking a basketball with hardly any air in it and a hoop to (try) and throw that flat ball into. I'm talking a beloved stuffed buffalo in his lap, a snack bag of Veggy Booty and a window rolled down for a car ride. Give him any of these scenarios and Leo will be downright celebratory. And I will go ahead and say it: I don't think you can say that about most typical children.
This morning on the drive to school, Leo was calling to me. I looked in the rear view mirror to see what the fuss was about. He simply wanted to show me that he and Ellie were holding hands. Ellie thought it was fun too as she was all smiles. Then I asked Leo his most loved question: Leo, who's your favorite person? The answer is always the same: Ellie!
At the meeting I attended last night, one of the coordinators for the school's early intervention program brought up a dilemma she is dealing with and asked for help. Apparently this year they have one baby starting E.I. Yup, that's it. One. I don't know what the usual number is but I got the feeling it was a lot more. The coordinator went on to say she's going to have to think about changing her "model." I think in English that means think about how to attract kids that don't just have Down syndrome. Leo's school is about 95 percent children with Down syndrome-the other five percent have some other syndromes or issues. I don't know if enrollment in the school is down but it's definitely not a large school, and children are bussed from as far as over an hour away. The mom sitting next to me happens to be a nurse at the local hospital. She chimed in with the fact that in the last year one baby has been born with Down syndrome at her hospital. Apparently this is also a drop from the usual number.
You don't have to be a genius (sorry) to realize there is something going on here. I'm not going to get into the whole issue of prenatal testing here because that's not what this is about. Also, it would make me a hypocrite. But sitting in that room last night, a room full of moms of children with Down syndrome, I was struck. I know we all have different stories of how we came to that room. Some of us knew long before they handed us our little person, swaddled like a burrito, what we were getting ourselves into. Others (like me) were blindsided. But still, here we are. And it's hard to believe that there may come a time in the not too distant future (if it's not already here) that there will be far fewer of these children that we are all working so hard for.
One of the moms chimed in: "I was watching my daughter with her P.T. the other day and I just looked at her therapist and said "Who wouldn't want a child like this?"
Well, I can think of a lot of people, actually. But I also know exactly what she means.
Last night Erin had the kids while I went to a parent volunteer group meeting (we mostly work on fund raising at Leo's school). According to Erin, Leo was an angel and helped her with Ellie, getting her diaper and helping dress her. He even took his medicine without a fuss (disguised in yogurt smoothie, but still).
The thing about Leo (and this never ceases to amaze me) is his default setting is Good Mood. Seriously. He is just for the most part, pretty happy. Not to further all those "they're such happy children" notions but really, if given the right set of circumstances, Leo is more than content. And I'm not talking ice cream sundaes and no school. I'm talking a bowl of oatmeal and his little sister sitting next to him. I'm talking a basketball with hardly any air in it and a hoop to (try) and throw that flat ball into. I'm talking a beloved stuffed buffalo in his lap, a snack bag of Veggy Booty and a window rolled down for a car ride. Give him any of these scenarios and Leo will be downright celebratory. And I will go ahead and say it: I don't think you can say that about most typical children.
This morning on the drive to school, Leo was calling to me. I looked in the rear view mirror to see what the fuss was about. He simply wanted to show me that he and Ellie were holding hands. Ellie thought it was fun too as she was all smiles. Then I asked Leo his most loved question: Leo, who's your favorite person? The answer is always the same: Ellie!
At the meeting I attended last night, one of the coordinators for the school's early intervention program brought up a dilemma she is dealing with and asked for help. Apparently this year they have one baby starting E.I. Yup, that's it. One. I don't know what the usual number is but I got the feeling it was a lot more. The coordinator went on to say she's going to have to think about changing her "model." I think in English that means think about how to attract kids that don't just have Down syndrome. Leo's school is about 95 percent children with Down syndrome-the other five percent have some other syndromes or issues. I don't know if enrollment in the school is down but it's definitely not a large school, and children are bussed from as far as over an hour away. The mom sitting next to me happens to be a nurse at the local hospital. She chimed in with the fact that in the last year one baby has been born with Down syndrome at her hospital. Apparently this is also a drop from the usual number.
You don't have to be a genius (sorry) to realize there is something going on here. I'm not going to get into the whole issue of prenatal testing here because that's not what this is about. Also, it would make me a hypocrite. But sitting in that room last night, a room full of moms of children with Down syndrome, I was struck. I know we all have different stories of how we came to that room. Some of us knew long before they handed us our little person, swaddled like a burrito, what we were getting ourselves into. Others (like me) were blindsided. But still, here we are. And it's hard to believe that there may come a time in the not too distant future (if it's not already here) that there will be far fewer of these children that we are all working so hard for.
One of the moms chimed in: "I was watching my daughter with her P.T. the other day and I just looked at her therapist and said "Who wouldn't want a child like this?"
Well, I can think of a lot of people, actually. But I also know exactly what she means.
Thursday, March 26, 2009
Bobby
Because I think we all need some levity around here, and just because I feel like sharing (and also, in this is probably only cute cause it's my kid but I have to report it anyway news: Ellie has named her pacifier. Its name is Bobby.
By the way, I know I know, she's almost 21 months and really shouldn't have a paci anymore but sue me, she only gets it in her crib and in the car. That's the rule.
Sunday I drove Erin's car to music class because Ellie's car seat was still in the backseat. Ellie is so accustomed to getting her pacifier in the car that as we drove away, immediate cries of "Bobby! Bobby!" were heard from the back.
It took me a few seconds to figure out who/what she was talking about.
Now we all know who Bobby is.
By the way, I know I know, she's almost 21 months and really shouldn't have a paci anymore but sue me, she only gets it in her crib and in the car. That's the rule.
Sunday I drove Erin's car to music class because Ellie's car seat was still in the backseat. Ellie is so accustomed to getting her pacifier in the car that as we drove away, immediate cries of "Bobby! Bobby!" were heard from the back.
It took me a few seconds to figure out who/what she was talking about.
Now we all know who Bobby is.
Sick Day
Tuesday evening I saw the writing on the wall, or in this case, in Leo’s communication book (the one that is passed between teacher/school nurse/therapist/me). They asked me to keep Leo home from school Wednesday and preferably, to take him to the doctor.
There had been reports in the last couple of days that Leo’s cough and congestion seemed increasingly worse, even on the heretofore miracle drug Zyrtec that had cured him of the uncontainable green nasal sludge flow a few weeks ago. He was reportedly coughing on the other children, having a difficult time breathing during nap, and just wasn’t generally himself.
Of course it was bad timing (isn’t it always?) as we were finishing up the latest issue at work. But I had no choice.
And so it was a quiet day of reading books and hanging out with Little People in the basement playroom (while I snuck in a few loads of laundry). There was some Noggin (I tried not to let Leo watch too much TV but figured since it’s technically a “sick day” and the whole point was for him to rest and he won’t nap so…Dora and Diego it is!) There was also playing outside while Ellie napped (miraculously we didn’t wake her—her window is just above the backyard) and some quality time for me with my steam cleaner (I mopped the kitchen and living room-can’t say I do that often during the week, er, ever, go me!).
All in all, a lovely day at home. It felt nice to be able to give the kids a break from the usual routine, to just move at a slow pace, for the biggest thing of the day to be a trek to the doctor in the afternoon.
The earliest doctor appointment was at 3:45 and it was just as well, because by this time I think we all had a bit of cabin fever. In fact, there were cheers (truly!) when I announced it was time to go “bye-bye.” For the record, Leo hardly seemed sick. More than a bit mouth breathy for sure and he didn’t have a huge appetite but the cough of course, seemed better (I say of course because it was the day I actually kept him home).
It was the usual afternoon crunch at the pediatricians. Who doesn’t love a waiting room full of coughing, microbe breathing kids. Leo did OK when we first got there but after 20 minutes he became a bit, shall we say, rambunctious. It was the children’s service all over again. Crawling on the coffee table, attempting to touch newborns (Gah!), laying on the carpet and kicking his feet. I wanted to disappear into the bench or mumble something like “where is that little boy’s mother?”
I let him wear his pirate hat and super hero cape which in hindsight might not have been the best idea. It may have riled him up and given him cause to perform even more than he already does (he is, after all a Leo both in name and in star sign and he lives up to this—loving being the center of attention, center of the waiting room, you know, whatev).
Long story short, it was a l-o-n-g wait. And it was hard. And I know it won’t always be like this, someday Leo will (god willing) be the sweet young man at Target who walks quietly next to his mom, making pleasant conversation (I saw a young man with Down syndrome with his mom at Target at a few months ago and resisted following them around—I meant to blog about it but there wasn’t all that much to say on the subject). I will look back on the waiting room antics and children’s service fiascos and think, Aw, it wasn’t so bad. But for now, it’s kinda hard. That’s all. I’m truly OK with it, but it doesn’t mean I don’t think about it.
When the doctor was examining Leo (he pretty much started making a fuss when he pulled out the stethescope if that tells you anything) he remarked on the phenomena of how children with hypotonia can also be incredibly strong. No freaking kidding. I’d like to see Dr. K get Leo downstairs in the morning when all he wants to do is climb in to our bed and watch Dora. No easy feat, let me tell you.
So we went on our merry way (an exhausted Leo—waiting room performing is hard work!-- insisted on riding in Ellie’s stroller) to get the antibiotic prescription filled. I thought briefly of venturing to the Walgreens drive thru a few towns over to save myself the hassle of shlepping everyone in and out of the double stroller, but decided against it. Ellie was chanting “ba-ba” and there was not a ba-ba in sight. The last thing I needed was a melt down from her. Luckily our neighborhood pharmacy filled it in like five minutes (take that chain stores) and we were home by 6 p.m.
Leo took his medicine (not happily), Ellie got her ba-ba, and I poured myself a glass of Zinfandel.
There had been reports in the last couple of days that Leo’s cough and congestion seemed increasingly worse, even on the heretofore miracle drug Zyrtec that had cured him of the uncontainable green nasal sludge flow a few weeks ago. He was reportedly coughing on the other children, having a difficult time breathing during nap, and just wasn’t generally himself.
Of course it was bad timing (isn’t it always?) as we were finishing up the latest issue at work. But I had no choice.
And so it was a quiet day of reading books and hanging out with Little People in the basement playroom (while I snuck in a few loads of laundry). There was some Noggin (I tried not to let Leo watch too much TV but figured since it’s technically a “sick day” and the whole point was for him to rest and he won’t nap so…Dora and Diego it is!) There was also playing outside while Ellie napped (miraculously we didn’t wake her—her window is just above the backyard) and some quality time for me with my steam cleaner (I mopped the kitchen and living room-can’t say I do that often during the week, er, ever, go me!).
All in all, a lovely day at home. It felt nice to be able to give the kids a break from the usual routine, to just move at a slow pace, for the biggest thing of the day to be a trek to the doctor in the afternoon.
The earliest doctor appointment was at 3:45 and it was just as well, because by this time I think we all had a bit of cabin fever. In fact, there were cheers (truly!) when I announced it was time to go “bye-bye.” For the record, Leo hardly seemed sick. More than a bit mouth breathy for sure and he didn’t have a huge appetite but the cough of course, seemed better (I say of course because it was the day I actually kept him home).
It was the usual afternoon crunch at the pediatricians. Who doesn’t love a waiting room full of coughing, microbe breathing kids. Leo did OK when we first got there but after 20 minutes he became a bit, shall we say, rambunctious. It was the children’s service all over again. Crawling on the coffee table, attempting to touch newborns (Gah!), laying on the carpet and kicking his feet. I wanted to disappear into the bench or mumble something like “where is that little boy’s mother?”
I let him wear his pirate hat and super hero cape which in hindsight might not have been the best idea. It may have riled him up and given him cause to perform even more than he already does (he is, after all a Leo both in name and in star sign and he lives up to this—loving being the center of attention, center of the waiting room, you know, whatev).
Long story short, it was a l-o-n-g wait. And it was hard. And I know it won’t always be like this, someday Leo will (god willing) be the sweet young man at Target who walks quietly next to his mom, making pleasant conversation (I saw a young man with Down syndrome with his mom at Target at a few months ago and resisted following them around—I meant to blog about it but there wasn’t all that much to say on the subject). I will look back on the waiting room antics and children’s service fiascos and think, Aw, it wasn’t so bad. But for now, it’s kinda hard. That’s all. I’m truly OK with it, but it doesn’t mean I don’t think about it.
When the doctor was examining Leo (he pretty much started making a fuss when he pulled out the stethescope if that tells you anything) he remarked on the phenomena of how children with hypotonia can also be incredibly strong. No freaking kidding. I’d like to see Dr. K get Leo downstairs in the morning when all he wants to do is climb in to our bed and watch Dora. No easy feat, let me tell you.
So we went on our merry way (an exhausted Leo—waiting room performing is hard work!-- insisted on riding in Ellie’s stroller) to get the antibiotic prescription filled. I thought briefly of venturing to the Walgreens drive thru a few towns over to save myself the hassle of shlepping everyone in and out of the double stroller, but decided against it. Ellie was chanting “ba-ba” and there was not a ba-ba in sight. The last thing I needed was a melt down from her. Luckily our neighborhood pharmacy filled it in like five minutes (take that chain stores) and we were home by 6 p.m.
Leo took his medicine (not happily), Ellie got her ba-ba, and I poured myself a glass of Zinfandel.
Tuesday, March 24, 2009
Down syndrome? Or Spoiled? And Because That's Not Enough, Let's Throw in Some Religion Too
Something happened over the weekend that I’m still thinking about.
First of all, about two months ago I started taking the kids to synagogue. I found a fairly friendly (we haven’t been going that long so I don’t feel quite like we belong yet, more on that below)… inclusive temple in a neighboring town. They hold a children’s service every Saturday morning and I’ve alternated taking one kid at a time as many Saturdays as possible (there are way too many doors in that room for me to handle both kids alone). I’m definitely not a religious person but I guess as I get older and with the kids, I can certainly feel myself searching for a return of some kind of faith, some semblance of community. Anyway…
A few things. Leo is, shall we say, “busy” during the children’s services. I wouldn’t characterize this as some formal ceremony where everyone is expected to stay perfectly still and silent. I mean, it’s a children’s service. It’s a bunch of kids (ages toddler to preschool) running around with plush Torahs and scarves and pom poms, singing songs and chanting prayers. You get the idea. But there are definitely moments that are meant to be more “quiet.” Where the majority of the children sit, you know, still, or on people’s laps. Except Leo, who is crawling around on the floor and pretending to be a dog. And then he is taking my purse and opening up all the pockets and unzippering all the zippers. I think he was looking for snacks (which I stupidly forgot). I grabbed my purse back from him as soon as I saw what he was doing. I feel like my description makes him sound completely out of control. But with the snacks, a part of me is like, what's with the constant snacking? Is it really necessary? Have I created snacking monsters? They seem to be hungry all.the.time.
Another side note: I’ve noticed Leo takes to dropping on all fours and barking (basically, pretending to be a dog) when introduced to group situations (birthday parties, children’s service at synagogue) at least initially. I am trying to figure out what this is about.
But back to last Saturday Leo was fascinated by the man with the guitar. He kept trying to touch the guitar, kept crawling towards the guitar case to open it. At one point the man patted him on the head. He was very patient. It made me think about how “convenient” it is that Down syndrome is so obvious, and how hard it must be for parents whose kids don’t act “right” yet have no physical signs of difference. I was doing my best to control Leo but he was really all over the place, to the point where I wondered if he was a distraction to the others. When one of the older kids (probably a four year old, actually) asked why Leo was doing what he was doing, the service leader said "he's just learning."
Regarding the forgotten snacks: Leo kept telling me he was hungry. I held out as long as I could with distractions and attempts at reason (“we’ll have lunch very soon, after the service” I know, I know, meaningless to a 4 ½ year old who developmentally is not even 4 1/2.)
And then, I caved. After the children’s service (and the adult service, which occur simultaneously) the whole congregation meets upstairs for a light lunch (bagels, salad, fruit, cookies). We were about 15-20 minutes away from the lunch and I figured it would be OK to sneak into the lunch room and take a bagel to tide Leo over, so that we could finish up the service and have lunch with the others. I held Leo’s hand and walked into the lunchroom where I spotted a child who had been in the service in the arms of her mother, eating a cookie (a cookie definitely from the lunch table, not a packed snack). When I saw this I figured we were safe, and I moved towards the bagels. I joked to one of the servers about Leo having a bagel “freak out” and would it be OK if we took one? He nodded like he could have cared less.
That’s when Nosey Man approached me and decided he needed to tell me that “We usually wait until after the service to eat.”
Now it’s obvious how I feel about this whole incident based on what I nicknamed the “gentleman” who approached us. Before I had kids I had strong opinions on “giving in” to kids, saying no, setting limits. I still feel that these things are necessary, it’s just a little different now. And with Leo, it’s a lot different. Here’s where I get confused. It’s not that Leo doesn’t understand the concept of no, because I know that he does, but he doesn’t seem to understand the concept of “not now but soon.” Maybe that is a four-year old thing and not a Down syndrome thing (I don’t want to get caught up in the blame it all on the DS). I just think that yes Leo is 4 ½ but not really. I actually don’t think Nosey Man even saw Leo, maybe if he had he would have been more sympathetic, who knows. More on Nosey Man: who was he? Did he chide the woman who gave her daughter the cookie? Was he just the congregation curmudgeon that I should blow off? I am a very sensitive person and I know this is. It’s one of my faults but I think in the grand scheme of faults it’s not a terrible one.
If you’ve read this far, thank you. What I am trying to figure out is behavior. Leo is hard to control and impossible to reason with. After I got him his (hard won) bagel, I just didn’t have it in me to go back to the service. So we left. So we missed lunch and we missed seeing the few people that I have met and started becoming friendly with and who I haven’t seen for over a month because birthday parties and various other events have meant we have not gone to synagogue. And I felt bad and sort of “stewy” in that this yucky thing had happened and I didn’t have anyone to talk to about it and so I felt like I was just stewing about it. I don’t know anyone at the synagogue well enough to feel like I can ask them, but I guess I need to just give it time. And I’m certainly not going to make it such a big thing that we won’t come back, or anything. But really, who yells at someone for eating a bagel at a synagogue? And the irony of this is, Jews love to eat!
But I do wonder about Leo’s behavior, if it’s too much. If he’s maybe not ready for the service. And it also got me thinking about one of the ironies of Down syndrome. On the one hand, I feel that it brings us together, that it draws people to us that we wouldn’t normally meet or interact with, but it also isolates us, in that it can be a deterrent, a put-off (“bad” behavior, inappropriate acting-out) or just such a giant pain-in-the-ass that it's easier to Go Home. The whole eating lunch after the service is great in theory. The adults get to socialize while the kids run around except I can't trust Leo to just "run around." He might bolt from the building and run into the parking lot.
That day at the service, Leo was acting out, acting up, couldn’t “handle it” (or maybe I was the one who couldn’t handle it) and so we left. Again, absolutely not blaming Down syndrome for all of this but I can’t think it’s not a contributing issue.
I have no answers, just questions. And some hurt feelings. And I’m annoyed at myself for being so sensitive yet I know that it’s this sensitivity that also helps me in a lot of other situations. I wish I could tie this one up in a neat blog bow, but I just can’t.
Gah.
First of all, about two months ago I started taking the kids to synagogue. I found a fairly friendly (we haven’t been going that long so I don’t feel quite like we belong yet, more on that below)… inclusive temple in a neighboring town. They hold a children’s service every Saturday morning and I’ve alternated taking one kid at a time as many Saturdays as possible (there are way too many doors in that room for me to handle both kids alone). I’m definitely not a religious person but I guess as I get older and with the kids, I can certainly feel myself searching for a return of some kind of faith, some semblance of community. Anyway…
A few things. Leo is, shall we say, “busy” during the children’s services. I wouldn’t characterize this as some formal ceremony where everyone is expected to stay perfectly still and silent. I mean, it’s a children’s service. It’s a bunch of kids (ages toddler to preschool) running around with plush Torahs and scarves and pom poms, singing songs and chanting prayers. You get the idea. But there are definitely moments that are meant to be more “quiet.” Where the majority of the children sit, you know, still, or on people’s laps. Except Leo, who is crawling around on the floor and pretending to be a dog. And then he is taking my purse and opening up all the pockets and unzippering all the zippers. I think he was looking for snacks (which I stupidly forgot). I grabbed my purse back from him as soon as I saw what he was doing. I feel like my description makes him sound completely out of control. But with the snacks, a part of me is like, what's with the constant snacking? Is it really necessary? Have I created snacking monsters? They seem to be hungry all.the.time.
Another side note: I’ve noticed Leo takes to dropping on all fours and barking (basically, pretending to be a dog) when introduced to group situations (birthday parties, children’s service at synagogue) at least initially. I am trying to figure out what this is about.
But back to last Saturday Leo was fascinated by the man with the guitar. He kept trying to touch the guitar, kept crawling towards the guitar case to open it. At one point the man patted him on the head. He was very patient. It made me think about how “convenient” it is that Down syndrome is so obvious, and how hard it must be for parents whose kids don’t act “right” yet have no physical signs of difference. I was doing my best to control Leo but he was really all over the place, to the point where I wondered if he was a distraction to the others. When one of the older kids (probably a four year old, actually) asked why Leo was doing what he was doing, the service leader said "he's just learning."
Regarding the forgotten snacks: Leo kept telling me he was hungry. I held out as long as I could with distractions and attempts at reason (“we’ll have lunch very soon, after the service” I know, I know, meaningless to a 4 ½ year old who developmentally is not even 4 1/2.)
And then, I caved. After the children’s service (and the adult service, which occur simultaneously) the whole congregation meets upstairs for a light lunch (bagels, salad, fruit, cookies). We were about 15-20 minutes away from the lunch and I figured it would be OK to sneak into the lunch room and take a bagel to tide Leo over, so that we could finish up the service and have lunch with the others. I held Leo’s hand and walked into the lunchroom where I spotted a child who had been in the service in the arms of her mother, eating a cookie (a cookie definitely from the lunch table, not a packed snack). When I saw this I figured we were safe, and I moved towards the bagels. I joked to one of the servers about Leo having a bagel “freak out” and would it be OK if we took one? He nodded like he could have cared less.
That’s when Nosey Man approached me and decided he needed to tell me that “We usually wait until after the service to eat.”
Now it’s obvious how I feel about this whole incident based on what I nicknamed the “gentleman” who approached us. Before I had kids I had strong opinions on “giving in” to kids, saying no, setting limits. I still feel that these things are necessary, it’s just a little different now. And with Leo, it’s a lot different. Here’s where I get confused. It’s not that Leo doesn’t understand the concept of no, because I know that he does, but he doesn’t seem to understand the concept of “not now but soon.” Maybe that is a four-year old thing and not a Down syndrome thing (I don’t want to get caught up in the blame it all on the DS). I just think that yes Leo is 4 ½ but not really. I actually don’t think Nosey Man even saw Leo, maybe if he had he would have been more sympathetic, who knows. More on Nosey Man: who was he? Did he chide the woman who gave her daughter the cookie? Was he just the congregation curmudgeon that I should blow off? I am a very sensitive person and I know this is. It’s one of my faults but I think in the grand scheme of faults it’s not a terrible one.
If you’ve read this far, thank you. What I am trying to figure out is behavior. Leo is hard to control and impossible to reason with. After I got him his (hard won) bagel, I just didn’t have it in me to go back to the service. So we left. So we missed lunch and we missed seeing the few people that I have met and started becoming friendly with and who I haven’t seen for over a month because birthday parties and various other events have meant we have not gone to synagogue. And I felt bad and sort of “stewy” in that this yucky thing had happened and I didn’t have anyone to talk to about it and so I felt like I was just stewing about it. I don’t know anyone at the synagogue well enough to feel like I can ask them, but I guess I need to just give it time. And I’m certainly not going to make it such a big thing that we won’t come back, or anything. But really, who yells at someone for eating a bagel at a synagogue? And the irony of this is, Jews love to eat!
But I do wonder about Leo’s behavior, if it’s too much. If he’s maybe not ready for the service. And it also got me thinking about one of the ironies of Down syndrome. On the one hand, I feel that it brings us together, that it draws people to us that we wouldn’t normally meet or interact with, but it also isolates us, in that it can be a deterrent, a put-off (“bad” behavior, inappropriate acting-out) or just such a giant pain-in-the-ass that it's easier to Go Home. The whole eating lunch after the service is great in theory. The adults get to socialize while the kids run around except I can't trust Leo to just "run around." He might bolt from the building and run into the parking lot.
That day at the service, Leo was acting out, acting up, couldn’t “handle it” (or maybe I was the one who couldn’t handle it) and so we left. Again, absolutely not blaming Down syndrome for all of this but I can’t think it’s not a contributing issue.
I have no answers, just questions. And some hurt feelings. And I’m annoyed at myself for being so sensitive yet I know that it’s this sensitivity that also helps me in a lot of other situations. I wish I could tie this one up in a neat blog bow, but I just can’t.
Gah.
Friday, March 20, 2009
Unquestionably Friday
I’ve been so good today. Finally motivated myself to make some long put off calls like scheduling a mammogram (fun!), getting the ball rolling on Leo’s orthotics (wee!) and calling the New Jersey Department of Disabilities to find out if there are ANY other services we are eligible for (Snore, depressing and answer: No).
This weekend the being a grown-up fun doesn’t end as my chore will be to gather up all the information for our taxes to be sent to the accountant. Good thing I can eat Frosted Flakes for breakfast and stay up as late as I want because honestly, this adult thing kind of sucks sometimes.
In Leo morning news, we had another less than stellar a.m. I’ve gotten the kids into a habit where they have snacks in the car on the way to daycare in the morning. Most mornings I think they both suffer from serious cases of l.b.s. (low blood sugar). The kids both eat breakfast that I pack them at daycare and so the precious little sandwich bags of pretzels or Trader Joe’s cheese crackers wonder do us all good. And it all works out fine as long as Leo is happy with the options, but today, nothing pleased him and he became increasingly frustrated with my questions: graham cracker? No! Veggy sticks? No! (followed by foot stomping and then Jello Boy.)
Honestly I think he would do so much better if I had all the time in the world to let him pause and think and decide. I don’t think he does well when barraged with questions and forced to make a quick decision (really, show me a four year old who does). Or maybe he was tired. Or maybe he just didn’t want to go anywhere. Or maybe I am just over thinking this whole thing. In any case I took Ellie out to the car and hoped that Leo would be a better mood when I popped back inside to get him but he was not improved or happier in any way. And even though my back had finally started to feel better this morning, I did what I swore I wouldn’t do which is carry him out to the car. I didn’t feel like I had a choice, considering Ellie was alone in the car out front (driveway, but still I'm not a huge fan of leaving kids in cars unattended).
There were tears in the car, but I was able to distract him by pointing out the clock that he likes to talk about, at an intersection not far from our house. He was fine by the time we reached daycare but then once inside he had some kind of meltdown, he tried to go into the director’s office where he likes to hide under the desk (adorable!). I wasn’t able to catch him in time and so there I was, trying to drag him out from under the desk by his pants (it sounds worse than it was but it still wasn’t good). Honestly this morning I felt defeated and a little embarrassed by the antics. I know it’s not my fault and it’s not really Leo’s fault but I can’t help but wonder, what do people think? I know that I shouldn't care but it's impossible for this not to cross my mind.
I wish that I could have calmly stood there and quietly talked Leo out from under the desk, but I had a bus to catch and a job to get to. Again, I think that Leo needs more of my time. What if I had all day to give just to him? Well than he wouldn’t be at daycare and I wouldn’t be trying to convince him to get in the car to go to daycare only to be standing there trying to fish him out from under a desk. Again, sigh.
After I dropped Ellie in the toddler room with her breakfast, I ducked into Leo’s room to give him some sliced pears to go with his French toast. He was sitting quietly at “his” table (he likes to sit in the corner table and eat by himself--it's not as pathetic as it sounds as he's right next to the other, more crowded table). I sat with him for a moment and he put his head on my chest, his arms wrapped tightly around mine. He sat quietly and just let me rub his back. He is rarely still like this.
This weekend the goal is to be in complete opposition to last weekend, which was fun, (marathon grocery shopping, birthday party, parade, play date) but severely overscheduled. I think we all need a break and some down time.
This weekend the being a grown-up fun doesn’t end as my chore will be to gather up all the information for our taxes to be sent to the accountant. Good thing I can eat Frosted Flakes for breakfast and stay up as late as I want because honestly, this adult thing kind of sucks sometimes.
In Leo morning news, we had another less than stellar a.m. I’ve gotten the kids into a habit where they have snacks in the car on the way to daycare in the morning. Most mornings I think they both suffer from serious cases of l.b.s. (low blood sugar). The kids both eat breakfast that I pack them at daycare and so the precious little sandwich bags of pretzels or Trader Joe’s cheese crackers wonder do us all good. And it all works out fine as long as Leo is happy with the options, but today, nothing pleased him and he became increasingly frustrated with my questions: graham cracker? No! Veggy sticks? No! (followed by foot stomping and then Jello Boy.)
Honestly I think he would do so much better if I had all the time in the world to let him pause and think and decide. I don’t think he does well when barraged with questions and forced to make a quick decision (really, show me a four year old who does). Or maybe he was tired. Or maybe he just didn’t want to go anywhere. Or maybe I am just over thinking this whole thing. In any case I took Ellie out to the car and hoped that Leo would be a better mood when I popped back inside to get him but he was not improved or happier in any way. And even though my back had finally started to feel better this morning, I did what I swore I wouldn’t do which is carry him out to the car. I didn’t feel like I had a choice, considering Ellie was alone in the car out front (driveway, but still I'm not a huge fan of leaving kids in cars unattended).
There were tears in the car, but I was able to distract him by pointing out the clock that he likes to talk about, at an intersection not far from our house. He was fine by the time we reached daycare but then once inside he had some kind of meltdown, he tried to go into the director’s office where he likes to hide under the desk (adorable!). I wasn’t able to catch him in time and so there I was, trying to drag him out from under the desk by his pants (it sounds worse than it was but it still wasn’t good). Honestly this morning I felt defeated and a little embarrassed by the antics. I know it’s not my fault and it’s not really Leo’s fault but I can’t help but wonder, what do people think? I know that I shouldn't care but it's impossible for this not to cross my mind.
I wish that I could have calmly stood there and quietly talked Leo out from under the desk, but I had a bus to catch and a job to get to. Again, I think that Leo needs more of my time. What if I had all day to give just to him? Well than he wouldn’t be at daycare and I wouldn’t be trying to convince him to get in the car to go to daycare only to be standing there trying to fish him out from under a desk. Again, sigh.
After I dropped Ellie in the toddler room with her breakfast, I ducked into Leo’s room to give him some sliced pears to go with his French toast. He was sitting quietly at “his” table (he likes to sit in the corner table and eat by himself--it's not as pathetic as it sounds as he's right next to the other, more crowded table). I sat with him for a moment and he put his head on my chest, his arms wrapped tightly around mine. He sat quietly and just let me rub his back. He is rarely still like this.
This weekend the goal is to be in complete opposition to last weekend, which was fun, (marathon grocery shopping, birthday party, parade, play date) but severely overscheduled. I think we all need a break and some down time.
Wednesday, March 18, 2009
Count to Ten
I should have known what kind of a morning it was going to be when I took one last (admittedly my first) glance in the mirror before leaving for daycare/work and realized I had MY SKIRT ON INSIDE-OUT.
In the history of mornings, today wasn’t that bad I guess. I just HATE yelling at Leo. And that’s what I did. I think I am pretty patient about 97 percent of the time. I know that he takes his time doing things, I know that when I ask him to turn off the TV or tell him that it’s time to go, he doesn’t do things immediately. He shuffles a little. He pauses at the top of the porch steps to listen to the birdies and the garbage truck roaring by (Dee-dee! Whaz-zat?). And that’s OK. It's actually quite sweet and most of the time, endearing. But when he goes all Jello on me when I’m trying to get him into the car seat and starts to kick me, that is not OK and yes, I raised my voice today. I hate doing it and I need to work on the whole “count to ten” thing. But I didn’t count to ten this morning and I yelled. I can only imagine what the neighbors must think. I chalk most of it up to the fact that I hurt my back again. I have this chronic, stupid injury (college crew + c-sections) that rears it’s burning, aching head every few months. It usually goes away after about a week but for a week I am uncomfortable and I have a short fuse and the last thing I want to do is try to fish a slippery 4 ½ year old from the back of a mini van (where he escapes to if he squirms free of me trying to fasten him into the car seat). And so I yelled.
Then at daycare he wouldn’t go into his room. He crawled into the kitchen like a dog and tried to hide behind the refrigerator. It is getting harder and harder to carry him and when he doesn’t want to do something it’s Jello all the way. It happens less and less but when my back is acting up it’s just intolerable. Do you hear that Leo?
But before I left him for the day we kissed and made up. I brought him his beloved pears and he kissed me and hugged me and he didn’t seem any worse for the wear.
I think I was the one who felt beaten up.
In the history of mornings, today wasn’t that bad I guess. I just HATE yelling at Leo. And that’s what I did. I think I am pretty patient about 97 percent of the time. I know that he takes his time doing things, I know that when I ask him to turn off the TV or tell him that it’s time to go, he doesn’t do things immediately. He shuffles a little. He pauses at the top of the porch steps to listen to the birdies and the garbage truck roaring by (Dee-dee! Whaz-zat?). And that’s OK. It's actually quite sweet and most of the time, endearing. But when he goes all Jello on me when I’m trying to get him into the car seat and starts to kick me, that is not OK and yes, I raised my voice today. I hate doing it and I need to work on the whole “count to ten” thing. But I didn’t count to ten this morning and I yelled. I can only imagine what the neighbors must think. I chalk most of it up to the fact that I hurt my back again. I have this chronic, stupid injury (college crew + c-sections) that rears it’s burning, aching head every few months. It usually goes away after about a week but for a week I am uncomfortable and I have a short fuse and the last thing I want to do is try to fish a slippery 4 ½ year old from the back of a mini van (where he escapes to if he squirms free of me trying to fasten him into the car seat). And so I yelled.
Then at daycare he wouldn’t go into his room. He crawled into the kitchen like a dog and tried to hide behind the refrigerator. It is getting harder and harder to carry him and when he doesn’t want to do something it’s Jello all the way. It happens less and less but when my back is acting up it’s just intolerable. Do you hear that Leo?
But before I left him for the day we kissed and made up. I brought him his beloved pears and he kissed me and hugged me and he didn’t seem any worse for the wear.
I think I was the one who felt beaten up.
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