FX video in progress, summer in progress, job landed

July 16, 2009

Check out this you tube video —




It’s hard to explain why these videos choke me up, even though I’m pretty okay about my own kids and the way they are.  I think it’s because in my eyes, my boys aren’t that affected.  I know that they are, but we are used to the way they are; their quirks and mannerisms don’t seem too strange to me.  But I see other kids doing the same things and making the same sounds, and I see how not normal it is, and then that puts me in touch with how not normal my own boys behave.  I think I don’t even see a lot of their problems in them, but I recognize them in other kids and know it’s not the way it should be.  I don’t know if that makes any sense at all.

Anyway, we are back in the land of the employed — that’s right, Mark got a great new job!  So we are all adjusting to the change of him not being here all day.  I think AJ missed him yesterday, he chewed on his shirt all day, and was very crabby and irritable at night, to the point that I wondered if he was feeling okay.

Aliza is having a wonderful summer of fun.  She banged up one of her knees, got a sliver in her foot, the summer injuries are abounding here.

I’ve been working on a video for a contest for Fragile X, I’ll of course post the link here when it’s done, but I will also send it out in an email to everyone whose email I have ever gotten ahold of, so some may feel bombarded with it — sorry in advance, I just need it to get a lot of views!  Should be done soon!  In fact, I’ll get working on that right now.


Car harnesses

July 4, 2009

I’m very excited because we have finally worked out how to keep the boys safely strapped into the car!  A therapist at Courage Center put me in touch with a vendor of special needs transportation products — she came out to Courage Center one day last week, had a list of possibilities, and we discussed the boys and what would work out best.  She came out to the car with me and looked at the booster seats we have, and showed me how the harnesses would attach to the car seats.  All that has to happen now is:

1.  The therapist writes a letter detailing why this type of harness is necessary for the safe transportation of our boys

2.  She sends the letter to our doctor, who will confirm and sign off on the letter as well

3.  The vendor will order the harnesses, and bill TEFRA for it.  The cost will come to somewhere between $400-$500 for the two of them.

Hopefully it’ll just be a couple more weeks and we’ll have them.  They even deliver them right to the house, and show us how to use them!   It is so, so wonderful.  We’ve been worried about how these boys are in the car for a long time now.

On a completely different note, I have to say that the 4th of July is not my favorite holiday.  It’s dangerous and loud, I can remember even as a little girl, when the neighbors would be out shooting off their own fireworks in their driveways, I’d be the one standing out there with the garden hose, prepared to hose anyone down who set themselves on fire.  I wonder if this is part of being a Fragile X gene carrier — it is an autism trait, definitely, to be afraid of loud noises.  Hmm, maybe I’ll have to email the list and ask if anyone else hates fireworks as much as I do.

Update long overdue

June 28, 2009

At the risk of repeating myself….sorry for the silent time between posts.

Summer now, the boys have ABA therapy every afternoon, roughly 12:30 to 7, with about an hour break in between shifts.  Three mornings a week we go to Courage Center for speech and occupational therapy.  I finally figured it out — down time is bad.  Busy, scheduled, organized time is good.

Yesterday we went to the Mothers of Multiples club picnic, and it was really nice.  Great location, great fun people.  I was surprised how many people did show up, considering the weather was less than ideal.  The boys did fine, well, AJ did fine.  He ran and played and had a terrific time.  He seems completely oblivious to the fact that he’s different from other kids.  Zack had a little more trouble, he whined and screamed through quite a bit of the day.  At one point he tried to bite a metal ladder or something, and it hurt his mouth, and he spent the whole rest of the afternoon trying to get over it. 

Somewhere between ages 3 and 4 things changed with the boys.  I feel like 3 year olds are still allowed to act like babies, somewhat, or at least toddlers.  4 year olds are definitely not babies anymore, and the ways in which AJ and Zack are different are much more pronounced now.  AJ blends a little bit — he runs with other kids, even though he won’t talk to them.  Zack has to be followed constantly, because you never know when he might run into a kid coming the other way on the climbing apparatus, and decide to lean over and bite the kid in the arm.  Other kids just don’t see that coming!

They do make some sounds now, there are just a few words you can get out of them.  Zack will say “up” if he wants you to pick him up, or just if you ask him to put his arms up.  They both will say “ball” although it sounds more like just “ba”.  We chant “Five Little Monkeys” several times a day, because they both love that.  And we’ll leave out a couple of words they can fill in:  “Five little monkeys, jumping on the – ” and they both will say “bed”.  Although it sounds more like “beh”.  “One fell off and bumped his – ” and they both will say “head” and reach up and touch their heads.  Here too, it sounds more like “heah”, they have trouble with the ending consonant for some reason.

Aliza is having a fun summer so far, although I’m aware that the long, boring part of summer is just around the corner now.  She went to two vacation bible schools and liked that.  I might have to see if there’s still a chance for me to get her into soccer or t-ball or something, somewhere.  I’d love for her to get into a drama camp or something like that, but she doesn’t want to.

Three teeth have fallen out so far — well, I use the phrase “fallen out” loosely, as two of them were knocked out when she fell down one afternoon.

Mark is still job hunting.  We are trying to make the best of this time.  Like anything, some days are better than others.  He did such an awesome job at our garage sale last week though, I’m thinking of trying to convince him to look into sales positions.  He got a guy to take our ancient, enormous snowblower that doesn’t work, and even got the guy to give him $5 for it.  He could sell the proverbial freezer to an eskimo, I bet.

An Aliza-ism

April 7, 2009

Aliza is driving a little Step2 tractor around and around the kitchen, while eating Froot Loops from a bag.

Aliza:  “Look mom, I’m eating while I’m driving.”

Mom:  “I see, you are very talented.”

Aliza:  “I know.  I may have to join the circus.”

Ronald Reagan, Michael J. Fox & Me

April 1, 2009

It’s funny, the connections you never anticipated.  I loved Michael J. Fox as a kid, anyone who knew me will tell you, I had pictures of him up all over my bedroom.  I was a freak, it’s embarrassing, really.

What I could never have guessed — that we’d have a connection, years later.  Well, us and Ronald Reagan.  Our paths have never crossed and yet we have something major in common — we’re all highly interested in stem cell research, because it could help find a cure or treatment for disorders affecting us.  Parkinson’s, Alzheimers, & Fragile X are linked somehow — I couldn’t begin to explain it — but the research that ‘s going into studying Fragile X treatment could also lead to treatments for Parkinson’s and Alzheimers.   It’s exciting because there’s sure to be more support and finances thrown toward this research if it could possibly be beneficial to several different diseases and disorders!

I was just thinking about this because MJF was on Regis & Kelly this morning, and I was remembering how I loved him.  And thinking how I could never in my wildest dreams anticipated the little connection we’d have now, 25 years later.  Ain’t life weird.

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?