Archive for March 2009

developmental delay vs. mental retardation

March 28, 2009

Yesterday I was thinking about the difference between the phrases Developmental Delay, and Mental Retardation.  MR is of course, bad words now.  It’s been used in a derogatory reference so much that it’s no longer just a clinical term.  It’s mean.  Developmental Delay is the new, politically correct way to refer to someone with mental deficiencies. 

The day we got the boys’ diagnosis, the doctor called me and knew he was describing something I’d never heard of.  So he used words and phrases like “language delays”, “motor skill delays”, and “learning disabilities”, all of which imply things that can be corrected.  Things that are not permanent.  Something that is “delayed” is still expected to reach it’s destination.  When you are at the airport and you look up at the arrivals and departures, if a plane is “delayed”, it doesn’t mean it isn’t going to get there at all.  Just means it’s going to take a little more time.  When that doctor talked about “delays”, I wasn’t left with an impression that this was all that horrible.  It wasn’t until I went to the National Fragile X Foundation website and saw the words “mental retardation” that I realized just how much he cushioned his description of Fragile X for me and what we were really in for.

Anyway all this is neither here not there, just something I was thinking about, for no particular reason.  This week has been long, it’s spring break for the kids so our routines are off.  Thank goodness it’s over.  Spring break is almost harder than summer, because it’s just a week, no routines can be set, there’s no time to get used to the new schedule.  We managed pretty well though.  Yesterday I took the boys to the zoo in the morning, and Zack only tried to bite 2 people, and they were both adults.  All the time he was behaving well, I praised him on how he handled himself, because I know how hard it is for him to be around a lot of people.  AJ was fine, he actually handles the crowd pretty well, as long as we aren’t there too long.  We stayed about an hour.

Facebook, the Great Time Waster

March 18, 2009

This morning I found out my true personality color is blue, and in my past life I was Ghandi.  Now there’s 45 minutes I’ll never get back.

Oooo, a quiz to find out which sexy lady I am.  Have to do that one.

Happy St. Pat’s Day

March 17, 2009

Yesterday I saw a bit of Zack’s therapy (I don’t usually, if I’m there, the boys are distracted), and I was so amazed.  He was responding to commands to make vowel sounds — he was saying “ooooh” and “aaahhh”  “oooo”.  He had more trouble with the “I” sound.  I had just never heard him try so hard to speak before.  I wish they’d let me video tape it so everyone could see, although if you don’t know the boys well, it may not mean as much to you.

Nice weather has again affected our sleep habits — the boys are sleeping better, and I’d bet money it’s because they’re spending more time outside the last few days.

I’ve been debating what to do about the boys for Easter.  Aliza is very excited to color eggs, and for the Easter bunny to come.  The boys have no clue about any of this.  They are as clueless as 1-year-olds.  So I have several options here:

1.  Get them Easter baskets and fill them with goodies, even though they won’t understand why they are getting them and likely won’t care about most of the goodies.

2.  Skip the whole thing, save the time and money, since they don’t know or care anyway.

3.  Get them small baskets with 1 or 2 goodies.

I think I’m going with #3, for Aliza’s sake more than anything else.  I want her to see that the Easter bunny brought things for her brothers too.  And that is sort of a “happy medium” between the other two options; it’s not ignoring them completely, but it’s not spending a great deal of money on something they won’t appreciate, either.

It’s just one of many times I get to wish I had 3 regular, typical kids and my biggest concern could be making sure things were equal between the three of them and treating them all the same.  Oh well.  I’m reading “Life of Pi” right now, and as you may know, sometimes I copy down particular lines from books that I like, and post them on the Books page of our family website.  Here’s one from “Life of Pi”:

“Things didn’t turn out the way they were supposed to, but what can you do?  You must take life the way it comes at you, and make the best of it.”

March 12, 2009

One More Thing

March 10, 2009

Wouldn’t Brett Favre make a great addition to next fall’s Dancing with the Stars?

And, is it me, or are the replacements to the injured stars more exciting than the original stars?

Mass Production

March 10, 2009

For the Mothers of Multiples meal swap, I made 36 servings of chicken tetrazzini yesterday, it took all afternoon.  And the worst part is, it’s not even that good.  Mark liked it, but I didn’t care for it too much.  I should have mass produced something that I’ve made before, that I knew was good, rather than trying a new recipe.  Next time I’m making tatortot hotdish.

I took this cute picture of Zack the other day, sitting at the table, and for the first time,  he smiled in response to the camera.  Such a normal kid thing to do!  He saw me raise the camera up and aim at at him, and he gave me a big silly grin.  I didn’t even have to sing “Hot Potato, Hot Potato”.

Aliza is Star of the Week at school this week, she is very excited.  I told her they didn’t do that when I was a kid, I could tell she thought I was very deprived.  We did have Show & Tell, though, I told her.

Last night I took her to a sibshop in Savage.  Sibshop is short for Siblings of Kids with Disabilities Workshop, or something like that.  She liked it although she wouldn’t tell me much about it, which I decided is fine, as long as she’s enjoying it.

I do wish I had more time for writing here.  This morning I have to get the house cleaned up, like I do every morning, I also need to run to the copy shop and get the printouts of the new member packet for tonight’s Mothers of Multiples meeting.  At some point today I need to go get some helium filled balloons to put on the tables at the meeting, which I will attach signs to, so people will know where to sit.  Oh and while I’m sitting here at the computer thinking about it, I need to email the folks who have to send me items for the April newsletter and remind them of the deadline.  And email the president and let her know how many new member cards I need her to print out and bring tonight.

At least today I’ll have more time for cleaning the house up, if I don’t get it done this morning.  Yesterday I had a meeting at 12 with the parent coordinator that works with our therapists; then I got started on the 36 servings of chicken tetrazzini; then I had an interview with a graduate student who is doing something to research or study Fragile X.  She got in touch with us through someone at the boys’ school, she’s focusing her study on AJ, which is funny because he’s the one who doesn’t care for being “observed” by strangers…..  She stayed about an hour.

Sorry for ending abruptly but I just realized it’s 9:30 and I better get a move on!