Many years ago, my mother was a special education teacher. And some of her “favorite” students? They had Down syndrome.
Over twenty years later, I still remember little David. He was tiny (well he was only four), with straight, warm chocolate colored brown hair, cut in a bowl shape (give him a break, it was the mid-eighties). You walked into the classroom and David threw his miniature arms around you. Inappropriate? Of course. Sweet and irresistible? That too.
A few times a year my mom would let me skip class and come to her school. I adored these sweet, affectionate little children (it was a “multiply disabled” preschool class, some had Down syndrome, some had other general developmental delays). They could also be scary. They had tantrums and outbursts. Sometimes it was hard to understand what they were saying, and that was the kids who talked at all.
But I knew the day I met him why David was my mom’s favorite. He was a charmer. He took you by the hand and led you to what he wanted to do, whether it was books or dress-up or wooden blocks. He was also sneaky. Sure David, you can have another cookie! Oh, whoops, they aren't supposed to have anymore cookies? David didn't speak much, but he never failed to get his point across. And that smile? Killer. Hmm...remind you of anyone?
Of course, the irony is not lost on me, how much my mother could have helped me with Leo, if she was still here, as a special education teacher, and of course as a mother and grandmother (my mother actually went on to teach "regular" elementary ed, but I'm sure she would have had plenty to add when Leo showed up).
Also, I can’t help thinking about my fourteen year old self, sitting in that huddle of preschoolers during story time. I had no idea what my future held, that my fortune held a child not so unlike one of them. Life is funny, isn’t it?
In those dark, early days after Leo’s birth, when I stared for hours at this little unexpected stranger with the extra chromosome, sleeping sweetly in the infant swing, I had countless one-sided conversations with my mother. Why did this happen? What do I do? What will he be like? What is he capable of? What should I expect?
And also? There was shame. Shame that I had not given her the “perfect” grandson.
Obviously I can only speculate as to what her reaction would have been. I think she would have grieved with me, but that wouldn't have lasted. In many ways, my mother was a very no-nonsense person. Not one to linger in tragedy (as I melodramatically viewed Down syndrome back then), her style was more to get up, brush yourself off and figure out What To Do Next. It’s no accident that one of the adages of hers that I repeat in times of trouble is “Every problem has a solution.” (Which is not to say that Leo is a problem, but when he was first born? Down syndrome was a big problem for me.)
Of course I know now that my apologies to her would have been more than unnecessary. There were so many years that she never thought she’d even have a grandchild, Leo was a gift, with or without Down syndrome.
At the worst, I think she would have worried. She would have worried for Leo’s health and worried about the added challenges that we would have with Leo (and that Leo would have). But if anyone were capable of loving a grandchild too much, it would have been my mother, who was unequivocally born to be a generous, doting grandmother.
I look at Leo today and I see the little David that Leo’s grandmother adored. And I also see glimmers of Leo’s grandmother, dancing around in his round little face, on his light brown hair, (grandma’s exact shade) and in his steely blue eyes and his cleft chin, the chin that is just like grandma’s.
She is never far from us, even though I know of course, that she is.
Friday, March 26, 2010
Wednesday, March 24, 2010
It Takes a Village
This morning was Leo’s spring parent-teacher conference. I last met with Leo’s teacher in the fall. I speak with her on the phone or via email or Leo’s communication book fairly regularly, so I didn’t learn much that I didn’t already know.
Even though it made the morning a bit extra hectic (and I had to bring Ellie with me) I like to get to Leo’s school as often as I can and it’s fun to visit Leo’s classroom. This morning, for example, I found out they are growing potatoes! Leo pointed to the tiny green sprouts poking through the dirt in the big purple Rubbermaid container and signed “baby.” Well they were baby potatoes, he was right.
Perhaps my favorite detail about this morning was seeing pictures from the Dr. Seuss Birthday celebration a few weeks ago. There was Leo, in a circle with a group of (all typical girls). He had his legs crossed, was leaning back in his chair and reading aloud from The Cat in the Hat and the girls were enthralled, clearly under Leo’s spell.
You certainly can’t complain about a meeting with a teacher that begins, “Well everyone loves Leo.”
I’m not surprised to learn that Leo is the “mayor” of his school. He greets everyone in the hall and everyone knows him. He is collectively adored.
I pressed her for the negative. It couldn’t be a total love-fest. Was there anything he needed to work on? Anything we should be doing with him at home?
He still has a hard time transitioning sometimes, but he is easily “redirected” when reminded of an upcoming fun activity. He can be a little overly “chatty,” both with his neighbors and teachers. He is constantly asking questions. Why? What’s that? (Obviously not much of a “problem” in my book for the speech delayed kid to be talking too much but I can imagine it can be annoying as a teacher).
Mrs. L. does think Leo could improve his handwriting, which I was surprised to hear, since I think it’s pretty darn impressive. But clearly I’m a little biased.
The discussion turned to the haircut/sensory concerns. Mrs. L. wanted to know what exactly was Leo’s “issue” with getting his hair cut, so that she and the Occupational therapist could figure out some techniques to help him overcome it. I explained in highly technical terms, that he basically flips. Out. I shared with her the fact that Leo’s been seeing an ENT since he was about six months old. Maybe he just doesn’t like people going at his head with sharp objects?
She agreed they would continue to work on it and even joked she’d been tempted to make a few snips here and there, when they were working with the scissors, but she was worried Leo would get the wrong idea and think it was acceptable to use scissors on other people’s hair.
And then I said in all seriousness, if you can cut Leo’s hair, I give you my blessing. For real. I was pretty much convinced she would have better luck than we do at home. I think we can all agree that most (all?) children are completey different people at school vs. home, so why not? I can see someone reading this and thinking, what, you can't even cut your own kid's hair? But it's not that simple. It reminds me of how Leo was potty trained at school for ages while he still continued to have accidents at home, or how he has always been so good about holding the hands of teachers or aides but up until very recently, would try to bolt when I walked with him.
They are just different creatures, when they're away from us. I firmly believe this.
Back to today. I arrived at work this morning (about an hour after meeting with Leo’s teacher) to a phone message from Ms. L.
“Just wanted to let you know we’ve made some progress in trimming Leo’s hair. It’s not finished yet but it’s a big improvement! I’ll keep you posted.”
And then an email, a few hours later:
Hi Maya,
As per my phone message to your work number, we are still working on Leo's hair - it's definitely a work in progress and will take days to complete. The Health teacher, came in today and told us that she used to be a hairdresser. She has all her equipment at home and will be happy to cut his hair (fix what I've done) once we feel he is ready. We're aiming for the Wednesday after vacation. She would like to know how you would like it cut. If you could find a picture of a haircut you like and could send it in that would be great.
Mrs. L.
And shortly after that email, another note arrived, with these attached:
It’s clear that they are using this as a “teachable moment” which I think is sweet. And smart.
Mrs. L. said that Leo "fussed a bit" [I had written her back inquiring how he reacted to the haircut]. She went on to say: "I did a little at a time. We used a doll and "cut" the dolls hair ( it didn't even have any hair) and then Leo's hair. I'll try to do a little every day to even it out. Tomorrow we talked about doing the front (just so it's not hanging in his eyes)."
Mrs. L.
My heart is swelling. It takes a village, indeed.
Even though it made the morning a bit extra hectic (and I had to bring Ellie with me) I like to get to Leo’s school as often as I can and it’s fun to visit Leo’s classroom. This morning, for example, I found out they are growing potatoes! Leo pointed to the tiny green sprouts poking through the dirt in the big purple Rubbermaid container and signed “baby.” Well they were baby potatoes, he was right.
Perhaps my favorite detail about this morning was seeing pictures from the Dr. Seuss Birthday celebration a few weeks ago. There was Leo, in a circle with a group of (all typical girls). He had his legs crossed, was leaning back in his chair and reading aloud from The Cat in the Hat and the girls were enthralled, clearly under Leo’s spell.
You certainly can’t complain about a meeting with a teacher that begins, “Well everyone loves Leo.”
I’m not surprised to learn that Leo is the “mayor” of his school. He greets everyone in the hall and everyone knows him. He is collectively adored.
I pressed her for the negative. It couldn’t be a total love-fest. Was there anything he needed to work on? Anything we should be doing with him at home?
He still has a hard time transitioning sometimes, but he is easily “redirected” when reminded of an upcoming fun activity. He can be a little overly “chatty,” both with his neighbors and teachers. He is constantly asking questions. Why? What’s that? (Obviously not much of a “problem” in my book for the speech delayed kid to be talking too much but I can imagine it can be annoying as a teacher).
Mrs. L. does think Leo could improve his handwriting, which I was surprised to hear, since I think it’s pretty darn impressive. But clearly I’m a little biased.
The discussion turned to the haircut/sensory concerns. Mrs. L. wanted to know what exactly was Leo’s “issue” with getting his hair cut, so that she and the Occupational therapist could figure out some techniques to help him overcome it. I explained in highly technical terms, that he basically flips. Out. I shared with her the fact that Leo’s been seeing an ENT since he was about six months old. Maybe he just doesn’t like people going at his head with sharp objects?
She agreed they would continue to work on it and even joked she’d been tempted to make a few snips here and there, when they were working with the scissors, but she was worried Leo would get the wrong idea and think it was acceptable to use scissors on other people’s hair.
And then I said in all seriousness, if you can cut Leo’s hair, I give you my blessing. For real. I was pretty much convinced she would have better luck than we do at home. I think we can all agree that most (all?) children are completey different people at school vs. home, so why not? I can see someone reading this and thinking, what, you can't even cut your own kid's hair? But it's not that simple. It reminds me of how Leo was potty trained at school for ages while he still continued to have accidents at home, or how he has always been so good about holding the hands of teachers or aides but up until very recently, would try to bolt when I walked with him.
They are just different creatures, when they're away from us. I firmly believe this.
Back to today. I arrived at work this morning (about an hour after meeting with Leo’s teacher) to a phone message from Ms. L.
“Just wanted to let you know we’ve made some progress in trimming Leo’s hair. It’s not finished yet but it’s a big improvement! I’ll keep you posted.”
And then an email, a few hours later:
Hi Maya,
As per my phone message to your work number, we are still working on Leo's hair - it's definitely a work in progress and will take days to complete. The Health teacher, came in today and told us that she used to be a hairdresser. She has all her equipment at home and will be happy to cut his hair (fix what I've done) once we feel he is ready. We're aiming for the Wednesday after vacation. She would like to know how you would like it cut. If you could find a picture of a haircut you like and could send it in that would be great.
Mrs. L.
And shortly after that email, another note arrived, with these attached:
It’s clear that they are using this as a “teachable moment” which I think is sweet. And smart.
Mrs. L. said that Leo "fussed a bit" [I had written her back inquiring how he reacted to the haircut]. She went on to say: "I did a little at a time. We used a doll and "cut" the dolls hair ( it didn't even have any hair) and then Leo's hair. I'll try to do a little every day to even it out. Tomorrow we talked about doing the front (just so it's not hanging in his eyes)."
Mrs. L.
My heart is swelling. It takes a village, indeed.
Friday, March 19, 2010
Friday Listiness
1. The forecast for today is 70 degrees. SEVENTY. Yes, I’m shouting. Less than a month ago we had a blizzard. I love the three days of spring (and I know, I know this isn't spring yet but just a tease) we get in New York City. Trust me, we go from cherry blossoms to jungle humidity in about sixty hours here and I am relishing every minute of this little spring preview.
2. People are walking around midtown Manhattan in flip flops and short sleeved shirts. We are desperate (clearly) for warmth. Tomorrow is supposed to be more of the same. Our big plans include a trip to Trader Joe’s for homemade salsa ingredients and, well, coming home to make homemade salsa. And play outside. Compensate for last weekend's very busy weekend which included heading into Manhattan not once, but twice, and on the same day of the worst storm in our area's history. Weeee!
3. OK, fine. I guess I’ll throw in a little vacuuming, laundry and yard work too, just because the house/yard is crying out for it.
4. All this warm(ish) weather has me craving these for Leo:
And for Ellie:
I’m probably jumping the gun just a tad regarding sandal planning (we could certainly get more snow knowing the way things go around here) but hey, a girl has to dream, have goals and make plans.
5. For those who may not know, Leo’s favorite color is yellow. If given a color choice, ever, it’s always yellow. A yellow balloon at Trader Joe’s, a yellow cupcake from Magnolia. He meets yellow items with such enthusiasm that I’m not sure what he’s going to do when he gets yellow shoes. But I’m going to risk it.
I admit, I went a little back and forth on the yellow ones. Are they a little too something? Maybe. I don’t know. Honestly though, isn’t life too short not to wear yellow shoes, if given the chance?
6. Ellie has become our sporadic translator. For the most part, I can understand Leo pretty well and a lot of his language is contextual, that is I get what he’s saying based on what we’ve been talking about already. But sometimes, I am just stumped. What did he say? That’s when Ellie steps in and matter-of-factly announces “he said rock” or “he said owl.” I love that they know each other this well.
7. I finally got my act together and contacted Leo’s occupational therapist about his “sensory issues” surrounding haircuts (or should I say his hysterical, scary, traumatic (for all of us) refusal to even entertain the possibility of a haircut). I tried to make a little joke of it in my note to the OT, saying something like “in case you hadn’t noticed, Leo will not tolerate a haircut" (my little ragamuffin). Parent/Teacher conferences are next week and she’s agreed to meet with me then. In the meantime she said she’s going to start doing some exercises with him that should help. I’m interested to know what those entail.
If all else fails, maybe the OT will cut Leo’s hair? Cause that's totally in her job description, right? (It's a shame the bus driver obviously failed to take the hint that he too could cut Leo's hair).
8. Lastly, an answer to my thank you note to Leo’s speech therapist for her note about Leo's reading of The Runaway Bunny (yes I am one of those parents who thanks teachers and therapists for every little thing they do, including taking the time to write me a note with a sweet detail about my child’s day. What can I say but that I come from a family of teachers and I know how hard they work/how overworked they are).
Her response:
"It is always my pleasure to work with Leo. He is a very, very hard worker. Each day continues to be richer than the last. Incorporating literacy into the sessions is an important part of speech therapy for my students. Leo responds very positively to books. Today he read "Brown Bear" along with me and did very well sounding out the words. Perhaps he has already read it at home, since he did such a great job. We worked on prediciton as well, and he was right on. Yes, Leo has become increasingly engaged and verbal recently and I believe this is the beginning of some very exciting times!"
I couldn't agree more.
2. People are walking around midtown Manhattan in flip flops and short sleeved shirts. We are desperate (clearly) for warmth. Tomorrow is supposed to be more of the same. Our big plans include a trip to Trader Joe’s for homemade salsa ingredients and, well, coming home to make homemade salsa. And play outside. Compensate for last weekend's very busy weekend which included heading into Manhattan not once, but twice, and on the same day of the worst storm in our area's history. Weeee!
3. OK, fine. I guess I’ll throw in a little vacuuming, laundry and yard work too, just because the house/yard is crying out for it.
4. All this warm(ish) weather has me craving these for Leo:
And for Ellie:
I’m probably jumping the gun just a tad regarding sandal planning (we could certainly get more snow knowing the way things go around here) but hey, a girl has to dream, have goals and make plans.
5. For those who may not know, Leo’s favorite color is yellow. If given a color choice, ever, it’s always yellow. A yellow balloon at Trader Joe’s, a yellow cupcake from Magnolia. He meets yellow items with such enthusiasm that I’m not sure what he’s going to do when he gets yellow shoes. But I’m going to risk it.
I admit, I went a little back and forth on the yellow ones. Are they a little too something? Maybe. I don’t know. Honestly though, isn’t life too short not to wear yellow shoes, if given the chance?
6. Ellie has become our sporadic translator. For the most part, I can understand Leo pretty well and a lot of his language is contextual, that is I get what he’s saying based on what we’ve been talking about already. But sometimes, I am just stumped. What did he say? That’s when Ellie steps in and matter-of-factly announces “he said rock” or “he said owl.” I love that they know each other this well.
7. I finally got my act together and contacted Leo’s occupational therapist about his “sensory issues” surrounding haircuts (or should I say his hysterical, scary, traumatic (for all of us) refusal to even entertain the possibility of a haircut). I tried to make a little joke of it in my note to the OT, saying something like “in case you hadn’t noticed, Leo will not tolerate a haircut" (my little ragamuffin). Parent/Teacher conferences are next week and she’s agreed to meet with me then. In the meantime she said she’s going to start doing some exercises with him that should help. I’m interested to know what those entail.
If all else fails, maybe the OT will cut Leo’s hair? Cause that's totally in her job description, right? (It's a shame the bus driver obviously failed to take the hint that he too could cut Leo's hair).
8. Lastly, an answer to my thank you note to Leo’s speech therapist for her note about Leo's reading of The Runaway Bunny (yes I am one of those parents who thanks teachers and therapists for every little thing they do, including taking the time to write me a note with a sweet detail about my child’s day. What can I say but that I come from a family of teachers and I know how hard they work/how overworked they are).
Her response:
"It is always my pleasure to work with Leo. He is a very, very hard worker. Each day continues to be richer than the last. Incorporating literacy into the sessions is an important part of speech therapy for my students. Leo responds very positively to books. Today he read "Brown Bear" along with me and did very well sounding out the words. Perhaps he has already read it at home, since he did such a great job. We worked on prediciton as well, and he was right on. Yes, Leo has become increasingly engaged and verbal recently and I believe this is the beginning of some very exciting times!"
I couldn't agree more.
Wednesday, March 17, 2010
Just Like Laura Ingalls Wilder and The Meeting
You may have heard about our weekend storm. Thankfully (and knock wood and all that) the worst thing about the Crazy Rain That Wouldn’t Stop was that we were cooped up inside for most of the weekend.
Without cable TV.
Yes, you read that right. No DVRed “Diegos” or “Doras” or “Super Whys.” No On Demand “Little Einsteins” (Leo’s new discovery—there is after all a character on the show named Leo!) or Ni Hao Kai Lan.
I know. How do we primitive pioneer people manage?
Crabbily, I assure you.
In all seriousness, we found ways to keep busy.
Let me pause quickly here to thank the inventors of the French drain, the sump pump and dehumidifiers (and the talented spouse who maintains our version of all three of these).
But I buried the lead, because hands down, the highlight of the weekend was this:
Yes it’s true. We finally got to meet the amazing Sophie. I won’t say there was instant chemistry (Leo swiftly jumped under the table at the restaurant when Sophie and her mom Amy arrived). But Leo came around quickly:
and as you can see, mere seconds later Leo was upright again and the happy couple (sorry guys, but Amy and I are planners—you heard it here first: Save the Date: 2033) were sharing scrambled eggs, Matchbox cars and Little People.
I think Ellie and Sophie enjoyed meeting too, don't you?
Just a bunch of buddies, you know, having brunch.
Without cable TV.
Yes, you read that right. No DVRed “Diegos” or “Doras” or “Super Whys.” No On Demand “Little Einsteins” (Leo’s new discovery—there is after all a character on the show named Leo!) or Ni Hao Kai Lan.
I know. How do we primitive pioneer people manage?
Crabbily, I assure you.
In all seriousness, we found ways to keep busy.
Let me pause quickly here to thank the inventors of the French drain, the sump pump and dehumidifiers (and the talented spouse who maintains our version of all three of these).
But I buried the lead, because hands down, the highlight of the weekend was this:
Yes it’s true. We finally got to meet the amazing Sophie. I won’t say there was instant chemistry (Leo swiftly jumped under the table at the restaurant when Sophie and her mom Amy arrived). But Leo came around quickly:
and as you can see, mere seconds later Leo was upright again and the happy couple (sorry guys, but Amy and I are planners—you heard it here first: Save the Date: 2033) were sharing scrambled eggs, Matchbox cars and Little People.
I think Ellie and Sophie enjoyed meeting too, don't you?
Just a bunch of buddies, you know, having brunch.
Tuesday, March 16, 2010
The Wit of the Bunny
Leo’s speech therapist wrote me a nice note yesterday:
“Leo had another wonderful session today. We read The Runaway Bunny and Leo was asked to identify elements of the story and respond to some simple questions. He really enjoyed the story. We worked on expanding his responses beyond one word. He did a great job with the response “under the tree.” If you have this book at home, he is now familiar with it and I’m sure would enjoy telling you all about it.”
It’s so wonderful to get these little glimpses into Leo’s life away from us. I know most five-year -olds, speech delayed or with Down syndrome or just garden variety “perfect” (wink, wink) with 46 chromosomes probably don’t provide most parents with loads of scintillating details of the day. Take Ellie, who can talk circles around me: half the time I know she is just making things up when I ask what she did at school. You had a birthday party for an elephant? How nice for you!
So Leo’s speech therapist wondered if we have The Runaway Bunny at home.
Um,…yeah. I bought this book before Leo was even born. I’m a huge Margaret Wise Brown fan (Goodnight Moon is my #1 all-time favorite children’s book). Now that I’m a mom I think one of the best things about having kids is sharing well-loved and remembered books. I actually started buying children’s books for my kids in my twenties, well before I had children.
I vividly remember the sunny spring day when I was still pregnant with Leo---Erin and I dropped close to $200 on children’s books at a little shop on Seventh Avenue in Park Slope, Brooklyn. We brought them home and read them aloud to each other, giddy.
Back to The Runaway Bunny.
In the movie version of the play “Wit,” the protagonist, Vivian Bearing, who is dying of cancer is read The Runaway Bunny by her mentor, Evelyn Ashford (by the way, you can watch it here if you're in need of a good cry).
Once there was a little bunny who wanted to run away.
So he said to his mother, “I am running away.”
“If you run away,” said his mother, “I will run after you.
For you are my little bunny.”
“If you run after me,” said the little bunny,
“I will become a fish in a trout stream
and I will swim away from you.”
“If you become a fish in a trout stream,” said his mother,
“I will become a fisherman and I will fish for you.”
“If you become a fisherman,” said the little bunny,
“I will become a rock on the mountain, high above you...”
Maybe it was because my own mother had just died, shortly after I first saw "Wit" (it features The Runaway Bunny, quite prominently). Maybe it’s because The Runaway Bunny has always had such a special place in my soul, but the story gets me every time. Is it about the never ending, faith, and boundless, unconditional love of a mother? Is it about the idea that those who love you (and whom you love) never truly leave you, even if they are technically gone from this Earth?
Evelyn Ashford said that the book was “a poem, a little allegory of the soul: Wherever the soul hides, God will find it.”
I like all of the possibilities. And I can’t wait to read it with Leo.
Thursday, March 11, 2010
Wisdom in the Snow
It was the day after our most recent snow storm. Ellie was inside with Erin where it was “nice and warm” (Ellie's words, honest) and I was on the back deck with Leo, attempting to build a snow man.
We rolled the appropriate balls together for the body. We found acorns for eyes and buttons and dried sticks for a mouth and arms and a nose. Leo’s hat was lent to our little snow man and he borrowed my gloves.
And, as I often do at moments I want to document (either here or for a photo album or whatever), I whisked the camera out of my pocket and attempted to take a picture.
Leo is often camera shy. He shakes his little fist at me and stomps his feet and yells “NO!” adamantly. I usually respect his wishes (and go ahead and sneak pictures in when I can), but this snow man was so precious and the activity had been such a delight. I wanted to have proof of it.
That’s when Leo pushed the snow man down. Destroyed it. Down went the head. The hat was thrown across the yard. The stick arms were tossed away with total disregard.
I stood, frozen. Not sure what to say or do. It all happened so fast.
To be honest, I wasn’t even angry. Just sad. Why would he do that?
And my next thought was what I often think when Leo does something "bad" and I'm a little ashamed to admit it. It’s because he has Down syndrome. He wouldn’t have done that if he didn’t have Down syndrome.
This is, of course ridiculous. Because who knows? Who knows which of Leo’s behaviors are related to Down syndrome? I mean, I have my suspicions, but again, why does it matter? It’s just an excuse to be mad. Or disappointed. Or depressed. Or to play that giant, stupid, loomy, “What If” card.
And what of all the so called "good" Down syndrome qualities? I won't even go into that list as I don't want to perpetuate stereotypes. I know, I know.
When Ellie won't stop chattering and go to sleep at 10:30 pm, or when she refuses to close the refrigerator door and sit in her chair to eat the string cheese, do I sigh and say, Oh, it's because she has 46 chromosomes? Right.
Back to the snow man.
After what seemed like forever (mere minutes), after the Appetite for Destruction of the snowman incident was over, I just quietly and calmly said to Leo, Why did you do that? Mommy helped you build a snow man and he was beautiful. And I wanted a picture of you two together.
And do you know what Leo did?
He rebuilt his snowman. Every last little body part and limb. Quietly and quickly and wordlessly, he put him back together.
And he crouched down and posed for a picture, without even being asked.
He said "Chee." (His version of "Cheese.")
Oh sure, Leo can be a little hurricane sometimes. And oh does he have a temper. But ultimately, he loves to please. And he knows how to do it. And oh does he know when he’s disappointed you.
This scares me a little, because I know how critical I can be. I’m working on trying to be more patient. Less reactive.
I should take a lesson from Leo.
I think he would have sat for photos for as long as I wanted to take them. He only stopped posing because I put the camera away, finally (and I didn't even get the Geez Mom! expression once!).
When it doesn’t involve food, Leo is one of the most patient people I know.
We rolled the appropriate balls together for the body. We found acorns for eyes and buttons and dried sticks for a mouth and arms and a nose. Leo’s hat was lent to our little snow man and he borrowed my gloves.
And, as I often do at moments I want to document (either here or for a photo album or whatever), I whisked the camera out of my pocket and attempted to take a picture.
Leo is often camera shy. He shakes his little fist at me and stomps his feet and yells “NO!” adamantly. I usually respect his wishes (and go ahead and sneak pictures in when I can), but this snow man was so precious and the activity had been such a delight. I wanted to have proof of it.
That’s when Leo pushed the snow man down. Destroyed it. Down went the head. The hat was thrown across the yard. The stick arms were tossed away with total disregard.
I stood, frozen. Not sure what to say or do. It all happened so fast.
To be honest, I wasn’t even angry. Just sad. Why would he do that?
And my next thought was what I often think when Leo does something "bad" and I'm a little ashamed to admit it. It’s because he has Down syndrome. He wouldn’t have done that if he didn’t have Down syndrome.
This is, of course ridiculous. Because who knows? Who knows which of Leo’s behaviors are related to Down syndrome? I mean, I have my suspicions, but again, why does it matter? It’s just an excuse to be mad. Or disappointed. Or depressed. Or to play that giant, stupid, loomy, “What If” card.
And what of all the so called "good" Down syndrome qualities? I won't even go into that list as I don't want to perpetuate stereotypes. I know, I know.
When Ellie won't stop chattering and go to sleep at 10:30 pm, or when she refuses to close the refrigerator door and sit in her chair to eat the string cheese, do I sigh and say, Oh, it's because she has 46 chromosomes? Right.
Back to the snow man.
After what seemed like forever (mere minutes), after the Appetite for Destruction of the snowman incident was over, I just quietly and calmly said to Leo, Why did you do that? Mommy helped you build a snow man and he was beautiful. And I wanted a picture of you two together.
And do you know what Leo did?
He rebuilt his snowman. Every last little body part and limb. Quietly and quickly and wordlessly, he put him back together.
And he crouched down and posed for a picture, without even being asked.
He said "Chee." (His version of "Cheese.")
Oh sure, Leo can be a little hurricane sometimes. And oh does he have a temper. But ultimately, he loves to please. And he knows how to do it. And oh does he know when he’s disappointed you.
This scares me a little, because I know how critical I can be. I’m working on trying to be more patient. Less reactive.
I should take a lesson from Leo.
I think he would have sat for photos for as long as I wanted to take them. He only stopped posing because I put the camera away, finally (and I didn't even get the Geez Mom! expression once!).
When it doesn’t involve food, Leo is one of the most patient people I know.
Wednesday, March 10, 2010
Too Much to Say and the Guilt
This morning I was informed by Ellie’s teacher that Ellie “more often than not does not take a nap.”
She just has too much to say, grinned Ms. K.
Ah, I see.
It’s true. Ellie narrates her life. No detail is too big or too small to tell us about: “Mommy, I want an orange. Mommy, I’m eating an orange. Mommy I want to throw my orange away.” Note: I'm not complaining here. It's wonderful to have a child who talks so much and I know the day will come (possibly) when the information isn't quite so easy to get.
The new not napping at school news explains last night, which included a lot of collapsing and “uppy” and an eventual dissolution. On the floor. Of every room in the house. Poor girl. It’s nights like those that bring the guilt. I get home too late. The kids’ day is too long. They’re exhausted when they do finally get home and all they want to do is watch television. I can’t really blame them. I often feel the same way.
And I know that guilt is a useless emotion. And the children are happy. They are thriving. And there is no "perfect" environment for children to be in, day in, day out.
We have a thirty-minutes-of-TV-at-night-rule, which I’m strict about. While I “cook” dinner (the most complicated I get most week nights is scrambled eggs) they watch Dora or Diego or something equally scintillating. And then the TV clicks off (the latest thing to fight about is who gets to turn the TV off and more nights than not, Leo turns it off first, followed by Ellie who screams, cries and says through tears: “I wanted to turn it off!” She then turns it back on and then off again).
It’s sad, really, how little I get to see them during the week, which is why these dinners are so important. As tempting as it is load the dishwasher or organize the recycling or go through the mail while the children eat, most nights I make myself sit with them. Be with them. Those tasks can wait.
Ellie still demands to sit on my lap for most meals, and I acquiesce (there’s the guilt again), though I also take off my nice work clothes before meals too, so many nights I sit at the table with the children in just an undershirt (and pants or a skirt, geesh!). They don’t seem to mind.
You never know what will be said. An example: the majority of last night’s conversation was taken up by Leo calling Ellie a “Bad dog” and Ellie’s insistence, over and over, “I’m not a bad dog!”
I rue the day I called Ruby a “Bad Dog.” For some reason that stuck with Leo. And he’s on a “Bad Dog” kick. And you don’t have to be a dog to be called one.
***
In other news, it was a glorious weekend (I guess this is old news by now but I needed some way to introduce this gratuitously adorable picture).
As you can see there was outside play, without gloves or hats and we even hauled out the death trap tricycle to see if maybe, since a whole season has gone by, the tricycle is not so…scary. It’s cute but I still contend it’s a hazard. Too bad, because did I mention it’s cute and retro! But really, it is the most top-heavy little trike I have ever experienced. I’d post it on Craigslist but feel kind of guilty selling, you know, a death trap.
She just has too much to say, grinned Ms. K.
Ah, I see.
It’s true. Ellie narrates her life. No detail is too big or too small to tell us about: “Mommy, I want an orange. Mommy, I’m eating an orange. Mommy I want to throw my orange away.” Note: I'm not complaining here. It's wonderful to have a child who talks so much and I know the day will come (possibly) when the information isn't quite so easy to get.
The new not napping at school news explains last night, which included a lot of collapsing and “uppy” and an eventual dissolution. On the floor. Of every room in the house. Poor girl. It’s nights like those that bring the guilt. I get home too late. The kids’ day is too long. They’re exhausted when they do finally get home and all they want to do is watch television. I can’t really blame them. I often feel the same way.
And I know that guilt is a useless emotion. And the children are happy. They are thriving. And there is no "perfect" environment for children to be in, day in, day out.
We have a thirty-minutes-of-TV-at-night-rule, which I’m strict about. While I “cook” dinner (the most complicated I get most week nights is scrambled eggs) they watch Dora or Diego or something equally scintillating. And then the TV clicks off (the latest thing to fight about is who gets to turn the TV off and more nights than not, Leo turns it off first, followed by Ellie who screams, cries and says through tears: “I wanted to turn it off!” She then turns it back on and then off again).
It’s sad, really, how little I get to see them during the week, which is why these dinners are so important. As tempting as it is load the dishwasher or organize the recycling or go through the mail while the children eat, most nights I make myself sit with them. Be with them. Those tasks can wait.
Ellie still demands to sit on my lap for most meals, and I acquiesce (there’s the guilt again), though I also take off my nice work clothes before meals too, so many nights I sit at the table with the children in just an undershirt (and pants or a skirt, geesh!). They don’t seem to mind.
You never know what will be said. An example: the majority of last night’s conversation was taken up by Leo calling Ellie a “Bad dog” and Ellie’s insistence, over and over, “I’m not a bad dog!”
I rue the day I called Ruby a “Bad Dog.” For some reason that stuck with Leo. And he’s on a “Bad Dog” kick. And you don’t have to be a dog to be called one.
***
In other news, it was a glorious weekend (I guess this is old news by now but I needed some way to introduce this gratuitously adorable picture).
As you can see there was outside play, without gloves or hats and we even hauled out the death trap tricycle to see if maybe, since a whole season has gone by, the tricycle is not so…scary. It’s cute but I still contend it’s a hazard. Too bad, because did I mention it’s cute and retro! But really, it is the most top-heavy little trike I have ever experienced. I’d post it on Craigslist but feel kind of guilty selling, you know, a death trap.
Friday, March 5, 2010
Baby Steps, the Hairy Patient and Watch What You Say
The note in Leo’s “Communication book” from his teacher said it all: “Leo was coughing a lot today.” In other words, take your kid to the flipping doctor or keep him home.
So I picked the kiddos up a little earlier than usual on Wednesday and headed to the doctor. I think it’s been a whole month since our last sick visit. Impressive!
The big news is that Leo allowed the doctor to listen to his chest. I know! He sat quietly and calmly, with nary a squirm while Dr. L confirmed that his lungs were clear. I credit this, which is one of the more popular toys at our house. Leo and Ellie have been doing a lot of medical play lately. And I present to you the world’s most patient patient:
I always say there's a special spot in Heaven for our Ruby.
Granted, Leo still flailed and kicked like the doctor was trying to set his ears on fire when she checked his ears, but hey. Baby steps, right? And the good news is, we left the doctor without a prescription for anything. The doctor simply pronounced Leo "croupy" and said to keep an eye on him.
In other exciting news, I am wearing a short sleeved shirt today! That alone is reason for celebration. Granted I do tend to run “hot blooded,” (i.e. when everyone else is shivering I’m opening a window. In January) but still, the being able to see my bare arms-it feels good. There’s talk of 50 degrees this weekend. Break out the kiddy pool!
***
Here’s a snippet from a morning conversation with Ellie. It’s birthday weekend (Erin’s and mine, 25! I feel so old! Ahem) at our place and so, in an effort to distract Ellie from something distressing on the drive to school this morning (“I don’t want to go to school, I want to stay home with you Mommy, I don’t want Baby Beluga! I want Baby Beluga! I no want my smoothie! I want my smoothie!”)
I give you:
Me: Ellie, do you know what Sunday is?
Ellie (Looking wide-eyed)
Me: It’s Mommy’s Birthday!
Ellie: Oh my god Mommy, you’re so silly!
Oh my god. I know, I know, as if I needed a reminder, but they listen to everything you say, don’t they?
So I picked the kiddos up a little earlier than usual on Wednesday and headed to the doctor. I think it’s been a whole month since our last sick visit. Impressive!
The big news is that Leo allowed the doctor to listen to his chest. I know! He sat quietly and calmly, with nary a squirm while Dr. L confirmed that his lungs were clear. I credit this, which is one of the more popular toys at our house. Leo and Ellie have been doing a lot of medical play lately. And I present to you the world’s most patient patient:
I always say there's a special spot in Heaven for our Ruby.
Granted, Leo still flailed and kicked like the doctor was trying to set his ears on fire when she checked his ears, but hey. Baby steps, right? And the good news is, we left the doctor without a prescription for anything. The doctor simply pronounced Leo "croupy" and said to keep an eye on him.
In other exciting news, I am wearing a short sleeved shirt today! That alone is reason for celebration. Granted I do tend to run “hot blooded,” (i.e. when everyone else is shivering I’m opening a window. In January) but still, the being able to see my bare arms-it feels good. There’s talk of 50 degrees this weekend. Break out the kiddy pool!
***
Here’s a snippet from a morning conversation with Ellie. It’s birthday weekend (Erin’s and mine, 25! I feel so old! Ahem) at our place and so, in an effort to distract Ellie from something distressing on the drive to school this morning (“I don’t want to go to school, I want to stay home with you Mommy, I don’t want Baby Beluga! I want Baby Beluga! I no want my smoothie! I want my smoothie!”)
I give you:
Me: Ellie, do you know what Sunday is?
Ellie (Looking wide-eyed)
Me: It’s Mommy’s Birthday!
Ellie: Oh my god Mommy, you’re so silly!
Oh my god. I know, I know, as if I needed a reminder, but they listen to everything you say, don’t they?
Tuesday, March 2, 2010
Unplanned Hiatus, A Return Thanks to Chemistry and Also: the “S” Word. Again.
What have we been up to? I’m so glad you asked.
You may have heard that it snowed (how many times am I going to say that this winter?) While nothing compared to the inundation that the DC-area has seen, last week was pretty impressive.
There have been snow men.
And of course, snow elephants.
And the Loch Ness Snow Monster made his home on our snow covered patio furniture.
There were a lot of Hayrides.
I came down with a wacky, miserable illness that I feared was going to land me on “Mystery Diagnosis” or “House.” Thankfully some good old pharmaceuticals stepped in and seem to be doing their job.
Leo continues his love for "Curious George: The Movie." I’d like to take this opportunity to publicly thank the compassionate librarian who took pity on me and let me re-check out the Curious George DVD (apparently that’s strictly forbidden). I had to pry that DVD out of Leo’s little hand when I went to renew it (and then discovered you’re not supposed to renew DVDs).
Leo discovered Peter Pan (the Disney version). Pirates. That’s all he needs.
I’ve started going to the library every Saturday and bringing home a heaping grocery bag of picture books for the kids. I know, I’m a little late to this. I think I got turned off on the library because I made the mistake of taking the children there to pick out books and they just aren’t ready for that yet—too overwhelming. Or maybe I need to up my medication to be able to handle taking them there. Kidding.
Ellie’s attention span for books has exploded in the last couple of weeks.
She wants to read the same book again and again and again. On repeat right now? The Max and Ruby books. They are adorable, I’ll admit. A way more palatable book-TV tie-in then that Dora girl.
What else? Let’s see.
Ellie got a haircut.
We plan on keeping it short for as long as she’ll tolerate it. I always thought long hair for a little girl would be a given, but Ellie’s not crazy about barrettes or pigtails, so for now, bob it is. She’s a little bit Coco Chanel, a little bit Ramona Quimby. It really suits her personality too.
Leo...
did not get a haircut.
To be fair, we have tried everything. Promises of ice cream cones while cutting hair, ice cream cones while watching "Dora" and getting a haircut, trips to the toy store after hair cutting. Nothing. I joke about it, but it really is troubling. I want him to look well-kept. Also, I hate that it is so upsetting and distressing to him to even consider a haircut. I cannot overemphasize how terrified he gets. I'm not sure how long we can go on my secret late night haircuts. I emailed Leo's teacher today to see if we can talk about some strategies. I guess it's sensory. Maybe his O.T. can help? Is there behavioral therapy for hair cuts?
Oy. Back to lighter topics.
The snow doesn't close our playground.
Ellie and I took a walk on Sunday afternoon.
She walked about two blocks before she announced “Uppy.” We went home to get the stroller, but the walking was fun while it lasted. When she’s not exhausted she can be a great little listener. It just never ceases to amaze me how she attends and follows me and stays close to me.
Ellie’s school (and Leo’s aftercare program) moved to a new location, about four minutes down the road. It’s a much nicer location and they’ll have a huge playground and garden once it warms up, but logistically, I’m not thrilled. It means I pick them up ten minutes later than I used to, and they’ve tightened the rules about lateness, apparently they’re going to start charging when they didn’t used to. I’m at the mercy of my bus (the 5:20) and the New Jersey Turnpike. Not a great combination.
I was worried when I learned the new bus Leo would be taking to the aftercare program would have him riding for almost an hour after school (OK, confession, I had a near freak-out). But then Erin calmed me down as she always does and made me look at it from another angle. We talked about whether it was so terrible for Leo to have a little time to decompress? He’s go-go-go all day at school. Hell, maybe he’ll even nap on the bus (the horrors!). A moving vehicle is the only way I can ever get him to sleep during the day.
So, yes. The one hour bus ride. At first it was feared, but now I think it's almost (almost) serendipitous. It's all about perspective.
I wonder, if he falls asleep on the bus, could they cut his hair?
You may have heard that it snowed (how many times am I going to say that this winter?) While nothing compared to the inundation that the DC-area has seen, last week was pretty impressive.
There have been snow men.
And of course, snow elephants.
And the Loch Ness Snow Monster made his home on our snow covered patio furniture.
There were a lot of Hayrides.
I came down with a wacky, miserable illness that I feared was going to land me on “Mystery Diagnosis” or “House.” Thankfully some good old pharmaceuticals stepped in and seem to be doing their job.
Leo continues his love for "Curious George: The Movie." I’d like to take this opportunity to publicly thank the compassionate librarian who took pity on me and let me re-check out the Curious George DVD (apparently that’s strictly forbidden). I had to pry that DVD out of Leo’s little hand when I went to renew it (and then discovered you’re not supposed to renew DVDs).
Leo discovered Peter Pan (the Disney version). Pirates. That’s all he needs.
I’ve started going to the library every Saturday and bringing home a heaping grocery bag of picture books for the kids. I know, I’m a little late to this. I think I got turned off on the library because I made the mistake of taking the children there to pick out books and they just aren’t ready for that yet—too overwhelming. Or maybe I need to up my medication to be able to handle taking them there. Kidding.
Ellie’s attention span for books has exploded in the last couple of weeks.
She wants to read the same book again and again and again. On repeat right now? The Max and Ruby books. They are adorable, I’ll admit. A way more palatable book-TV tie-in then that Dora girl.
What else? Let’s see.
Ellie got a haircut.
We plan on keeping it short for as long as she’ll tolerate it. I always thought long hair for a little girl would be a given, but Ellie’s not crazy about barrettes or pigtails, so for now, bob it is. She’s a little bit Coco Chanel, a little bit Ramona Quimby. It really suits her personality too.
Leo...
did not get a haircut.
To be fair, we have tried everything. Promises of ice cream cones while cutting hair, ice cream cones while watching "Dora" and getting a haircut, trips to the toy store after hair cutting. Nothing. I joke about it, but it really is troubling. I want him to look well-kept. Also, I hate that it is so upsetting and distressing to him to even consider a haircut. I cannot overemphasize how terrified he gets. I'm not sure how long we can go on my secret late night haircuts. I emailed Leo's teacher today to see if we can talk about some strategies. I guess it's sensory. Maybe his O.T. can help? Is there behavioral therapy for hair cuts?
Oy. Back to lighter topics.
The snow doesn't close our playground.
Ellie and I took a walk on Sunday afternoon.
She walked about two blocks before she announced “Uppy.” We went home to get the stroller, but the walking was fun while it lasted. When she’s not exhausted she can be a great little listener. It just never ceases to amaze me how she attends and follows me and stays close to me.
Ellie’s school (and Leo’s aftercare program) moved to a new location, about four minutes down the road. It’s a much nicer location and they’ll have a huge playground and garden once it warms up, but logistically, I’m not thrilled. It means I pick them up ten minutes later than I used to, and they’ve tightened the rules about lateness, apparently they’re going to start charging when they didn’t used to. I’m at the mercy of my bus (the 5:20) and the New Jersey Turnpike. Not a great combination.
I was worried when I learned the new bus Leo would be taking to the aftercare program would have him riding for almost an hour after school (OK, confession, I had a near freak-out). But then Erin calmed me down as she always does and made me look at it from another angle. We talked about whether it was so terrible for Leo to have a little time to decompress? He’s go-go-go all day at school. Hell, maybe he’ll even nap on the bus (the horrors!). A moving vehicle is the only way I can ever get him to sleep during the day.
So, yes. The one hour bus ride. At first it was feared, but now I think it's almost (almost) serendipitous. It's all about perspective.
I wonder, if he falls asleep on the bus, could they cut his hair?
Busy Guy
Leo has been doing some great work at school. I realize this post might only be interesting to about three other people (Hi Grandmas and Grandpa!) but I wanted to share this.
His handwriting is really improving. The inside of the Valentine's Day card he gave us:
For some reason this one cracked me up. It's a little hard to read. It was a project for Martin Luther King Day. It says "He had a dream." Awwww....
And this is just pretty. You can't tell here but it's three-dimensional and the heart stands about an inch tall. I need to find some kind of shadow boxy frame for it. I can't really believe that Leo rolled up all these little pieces of paper (sorry) but if they say he did, I'm gonna go with that.
His handwriting is really improving. The inside of the Valentine's Day card he gave us:
For some reason this one cracked me up. It's a little hard to read. It was a project for Martin Luther King Day. It says "He had a dream." Awwww....
And this is just pretty. You can't tell here but it's three-dimensional and the heart stands about an inch tall. I need to find some kind of shadow boxy frame for it. I can't really believe that Leo rolled up all these little pieces of paper (sorry) but if they say he did, I'm gonna go with that.
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