Archive for July 2009

July 16, 2009

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.