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Mark it down people. 6:27 this morning my son stood up and banged a bowl and spoon together (as is his wont) without holding onto anything. I had enough time to look around him to make sure he wasn't touching a chair or something, but no, 5 seconds of standing.
It's a good news/bad news thing.
Dec. 22nd, 2008 09:13 pmGood news: We're safely at Home_north.
Bad news: We forgot the ukulele.
Good news: We forgot the ukulele.
Bad news: We know people who might lend us a ukulele.
Bad news: We forgot the ukulele.
Good news: We forgot the ukulele.
Bad news: We know people who might lend us a ukulele.
(no subject)
Dec. 19th, 2008 07:48 pmNico did something like a step today on several different occasions. I didn't see the first, as I was foraging in the wild jungles for more information about the sword of justice as a papal and crusading symbol, but I got a detailed report. This evening, I took his "car" toy and got him to go from the couch to the coffee table, each time moving the table a little farther away from the couch. He's not walking, but he is controlling the release from the first surface, and stepping as he catches the second surface.
This is much more fun than the plateau phase.
Note to self - pack snow suit.
This is much more fun than the plateau phase.
Note to self - pack snow suit.
Nico progress report.
Dec. 18th, 2008 07:45 pmLooking back on the last semester - it was long and hard. Beyond the work and the difficult schedule and our own lives, parenting was extra difficult. Nico was stuck on really all issues - walking, communication, overall body strength, eating, interacting with other children, attention span ... especially attention span. It was tiring and frustrating. I know that I had begun to really feel the weight of Nico's disability. I had sort of figured that by 2, we'd be close to where most children are by 16-18 months - rudimentary speech, standing/walking to some extent, greater ability to both follow direction and initiate play. It just didn't feel like we were anywhere near those benchmarks.
As a father of a child with Down's, I work hard to parent without expectations - I don't want to set limits for Nico's potential, but nor do I want to expect certain things to happen on any particular schedule. It's a challenge, and I had, it turns out, set these "by two" benchmarks.
Since Thanksgiving, Nico has made great strides in essentially every category. He also seems to have grown last week (it's not just the Lightning McQueen sneakers!), as he towers above objects that just recently were at his eye level. His attention span is great. He's signing consistently (baby, mommy, daddy, eat, drink, bath/potty, sleep, no, yes (sometimes), love, play (not always used clearly), and no doubt others). He's making all sorts of new sounds with his mouth, some of which reflect words (I say, "ba-ba-ba bath." He says, "buh buh buh buh buh!"). He's following directions of increasing complexity and showing attention to completing whole tasks (unload all the blocks. Pause. Put all the blocks back in) rather than starting many things. All his therapies have been fantastic this last week - from group play to communication to eating with a spoon to lots of standing in PT.
It's beginning to look a lot like Christmas?
As a father of a child with Down's, I work hard to parent without expectations - I don't want to set limits for Nico's potential, but nor do I want to expect certain things to happen on any particular schedule. It's a challenge, and I had, it turns out, set these "by two" benchmarks.
Since Thanksgiving, Nico has made great strides in essentially every category. He also seems to have grown last week (it's not just the Lightning McQueen sneakers!), as he towers above objects that just recently were at his eye level. His attention span is great. He's signing consistently (baby, mommy, daddy, eat, drink, bath/potty, sleep, no, yes (sometimes), love, play (not always used clearly), and no doubt others). He's making all sorts of new sounds with his mouth, some of which reflect words (I say, "ba-ba-ba bath." He says, "buh buh buh buh buh!"). He's following directions of increasing complexity and showing attention to completing whole tasks (unload all the blocks. Pause. Put all the blocks back in) rather than starting many things. All his therapies have been fantastic this last week - from group play to communication to eating with a spoon to lots of standing in PT.
It's beginning to look a lot like Christmas?
(no subject)
Dec. 14th, 2008 12:25 pmThere's a post out there today of a "friend" (not someone I actually know that well) who has been out of touch with LJ.
He's asking for updates because, "If there's something you've been assuming I know because you wrote about it on LJ and in the past I've reliably read your LJ, you might want to point it out to me. Alternately, you can just regard me as the retard in the corner who never knows what's going on."
I find this metaphor infuriating and offensive, although I know that as with most such things he means nothing by it. What's the best response? Ignore? Post something publicly in comments? Send a private email? Write an LJ post of my own about how offensive I find it and hope someone reads it?
What do you think?
Edit - I posted what I hope was both a polite and firm comment.
He's asking for updates because, "If there's something you've been assuming I know because you wrote about it on LJ and in the past I've reliably read your LJ, you might want to point it out to me. Alternately, you can just regard me as the retard in the corner who never knows what's going on."
I find this metaphor infuriating and offensive, although I know that as with most such things he means nothing by it. What's the best response? Ignore? Post something publicly in comments? Send a private email? Write an LJ post of my own about how offensive I find it and hope someone reads it?
What do you think?
Edit - I posted what I hope was both a polite and firm comment.
(no subject)
Dec. 12th, 2008 04:24 pmMore from Europe:
( Nico vs a peach )
( Nico and me at the Papal Palace in Avignon )
( Possibly the best picture taken of me in years )
( Nico vs a peach )
( Nico and me at the Papal Palace in Avignon )
( Possibly the best picture taken of me in years )
(no subject)
Dec. 11th, 2008 05:07 pmPaul Krugman posted a LOLcat. I take back some of the negative things I have said about LOLcats, and am now revising my stance: They are permissible only in celebration of international acclimation awards of the highest caliber, and at no other time.
I just realized that these hundred+ pictures of Nico and family in France and Italy were online.
A few are spectacularly beautiful. Many relate to food. Here's one of me and my boy ... well, my head anyway.
.
If you take a look, tell me your favorites!
A few are spectacularly beautiful. Many relate to food. Here's one of me and my boy ... well, my head anyway.
.If you take a look, tell me your favorites!
Potty Humor
Dec. 6th, 2008 05:44 pmI will cut all posts about bathroom-related events. This one is quite positive, but still refers to poo. Over the next few years there are likely to be more of them. Sorry.
( Read more... )
( Read more... )
It’s not just a matter of contesting other people’s low expectations of your child, it’s a matter of recalibrating your own expectations time and time again—and not only for your own child, but for Down syndrome itself.
Read this blog.
(no subject)
Nov. 22nd, 2008 04:06 pmNico learned how to nod "yes" today. He leads with his chest. He still prefers to shake his head "no," regardless of his intention.
Also, I am probably buying Nico a ukelele tomorrow.
Also, I am probably buying Nico a ukelele tomorrow.
(no subject)
Nov. 21st, 2008 02:11 pmMy son's eating hygiene has collapsed. He now only willingly eats edamame, green beans, plain noodles, yoghurt, fruit, cottage cheese. He used to eat many more things. Like, over the last weekend. It's very frustrating.
Edit - Sweet potatoes back on the menu. Fish sticks and chicken nuggets, spaghetti-os (indistinguishable from the food he ate from jars) still off, fruit-and-nut bread still on.
Edit - Sweet potatoes back on the menu. Fish sticks and chicken nuggets, spaghetti-os (indistinguishable from the food he ate from jars) still off, fruit-and-nut bread still on.
God bless the TSA
Nov. 16th, 2008 01:03 pmHome again. There were a lot of military personnel on the flight (traveling from Fort Bragg to Fort McCoy, in WI, to train for a few weeks before they deploy). One of them said, with a heavy note of irony,
"They threw out my cans of Red Bull, but they let me keep my butane lighter and MREs."
"They threw out my cans of Red Bull, but they let me keep my butane lighter and MREs."
Today and Yesterday
Nov. 14th, 2008 10:59 pm"My sister had Down Syndrome."
"My brother has Down Syndrome."
"My 'little sister' on my swim team in highschool had Down Syndrome."
"There's a boy with Down syndrome in my congregation. My kids are in Sunday School with him, and we all feel like each one of us needs to make sure that he's included, always, that he's a part of all our families."
It's enough to make a Daddy weepy. Especially the first one, as her parents made the decision in the 60s to ignore the doctors and take their daughter home. She was one of the first people to have open heart surgery. Her parents made the world in which my son now thrives. I am so grateful.
Good night.
"My brother has Down Syndrome."
"My 'little sister' on my swim team in highschool had Down Syndrome."
"There's a boy with Down syndrome in my congregation. My kids are in Sunday School with him, and we all feel like each one of us needs to make sure that he's included, always, that he's a part of all our families."
It's enough to make a Daddy weepy. Especially the first one, as her parents made the decision in the 60s to ignore the doctors and take their daughter home. She was one of the first people to have open heart surgery. Her parents made the world in which my son now thrives. I am so grateful.
Good night.
Conversation with Nico
Nov. 10th, 2008 03:22 pmI can really think of no better example than the communication Nico and I just had to epitomize how wonderful (and where) his development is right now.
- Nico takes a drink of milk from a sippy cup, lifting his arms to do so. This is a major accomplishment because he's used to straws, which require no lifting.
- He then looks at me, a gleam in his eye. I say, "All-done spot." He looks at said all-done spot. Grins. I say, "Nico, all-done spot." He leans forward and lifts the cup in the air toward the spot as I lift my arms up a bit, ready to cheer. With authority, Nico places the cup in the cup-holder. I say, "Hooray!" and lift my arms triumphantly into the air.
- Nicholas lifts his arms in the air, draws in an audible breath, and says, "aaayyyy." Then he crosses his arms over his chest and beams at me. I tell him, "I love you too" and sign it. He presses his hand hard against his chest and grins (as if to say, "meeeeee!").
Then he throws his cup on the floor.
- Nico takes a drink of milk from a sippy cup, lifting his arms to do so. This is a major accomplishment because he's used to straws, which require no lifting.
- He then looks at me, a gleam in his eye. I say, "All-done spot." He looks at said all-done spot. Grins. I say, "Nico, all-done spot." He leans forward and lifts the cup in the air toward the spot as I lift my arms up a bit, ready to cheer. With authority, Nico places the cup in the cup-holder. I say, "Hooray!" and lift my arms triumphantly into the air.
- Nicholas lifts his arms in the air, draws in an audible breath, and says, "aaayyyy." Then he crosses his arms over his chest and beams at me. I tell him, "I love you too" and sign it. He presses his hand hard against his chest and grins (as if to say, "meeeeee!").
Then he throws his cup on the floor.
Communication
Nov. 5th, 2008 03:48 pmIt's been a long time since I wrote about Nico's development. There are ten thousand things he does better or he's learned how to do or he communicates about. But there's also a dirth of massive leaps of development: He doesn't walk yet, he doesn't really talk or sign yet, he doesn't self-feed with a spoon (that's my list of the top 3. My wife may have others).
But there are ten thousand things he's learned to do. Signs and sounds and coordination and playing and snuggling and so much more.
And every so often, there are glimpses - he forgets to hold onto something and just stands up for a moment; he picks up a spoon, dips it in his food, then pops it into his mouth; or he speaks.
On Halloween, we went up to one door and a couple came out, the woman holding her baby. Nico said, "Baby" and was very excited about the tinier person.
Today, we were listening to Bare Naked Ladies' classic song, "Popcorn." I was saying "Pop pop pop pop pop pop pop" (as the song goes), and Nico started to move his mouth along, saying "Popopopopopopopop." After, we clapped and I turned it on again. When we got to the popping part, I said pop a lot, then said, "Your turn!" Nico responded, "ay tur." It was unmistakeably him saying, "My turn," something we say to him a lot.
So it's still a struggle to get him to replicate his speech, but it's coming ... it's coming.
But there are ten thousand things he's learned to do. Signs and sounds and coordination and playing and snuggling and so much more.
And every so often, there are glimpses - he forgets to hold onto something and just stands up for a moment; he picks up a spoon, dips it in his food, then pops it into his mouth; or he speaks.
On Halloween, we went up to one door and a couple came out, the woman holding her baby. Nico said, "Baby" and was very excited about the tinier person.
Today, we were listening to Bare Naked Ladies' classic song, "Popcorn." I was saying "Pop pop pop pop pop pop pop" (as the song goes), and Nico started to move his mouth along, saying "Popopopopopopopop." After, we clapped and I turned it on again. When we got to the popping part, I said pop a lot, then said, "Your turn!" Nico responded, "ay tur." It was unmistakeably him saying, "My turn," something we say to him a lot.
So it's still a struggle to get him to replicate his speech, but it's coming ... it's coming.
