Sunday, April 19, 2009

Sleep disorders

Quinn is up again, wide awake and jumping, for no discernible reason. Sarah and I are having a very difficult time. We're going to have to take another crack at this. 2.5mL of liquid melatonin isn't working. The sleep deprivation makes so many other things miserably difficult. And it makes it emotionally very difficult for me.

Thursday, April 16, 2009

Children needed for cognitive research

My friend, Dr. Silvia Bunge, needs children for a research project involving children's cognition. They've got some very promising preliminary results (including significant increases in IQ after an 8-week after school program), but need to recruit more children. Here's the link to their lab. It's in Berkeley, CA on the UC Berkeley campus. Quinn's too young to do this, but I thought other readers might have kids who would fit their needs.

Disclosure: I might be working with the Bunge Lab, so I have an incentive to be nice to them.

Sunday, April 12, 2009

Happy Easter!

Quinn hunts for eggs at our neighbor's annual egg hunt. Quinn didn't
quite get the whole "collection" concept and would often re-hide the
eggs after finding them. But he seemed to have fun and liked the
treats inside. He quickly got overwhelmed by all the people though.

Saturday, April 11, 2009

Quinn attempts to climb into the otter enclosure

We went to the Oakland Zoo today. Quinn pointed to many of the
animals. He liked the otters a lot, or maybe just wanted to play in
their water. Here he is casting aside his drink and attempting to
scale the fence. We are happy to report he was unsuccessful in the

Friday, April 10, 2009

He has pooped...

...and the explanation for the wakeup is revealed to us. Now perhaps he
will go back to sleep.

No, he wasn't asleep

Update to previous post: he's still awake. His crying got louder so we
brought him into the bed. This seemed to cheer him up, but didn't help
him get to sleep. So we put him back in his crib. I'm going to get a
snack. I'm over the anger part and now I'm in the zombie part.

Note: the times on these posts are integral to the content.

Bad sleep is back again

Quinn is once again having whimpering wake-ups for no discernible
reason. This pushes my helpless rage buttons more than just about
anything else. Once I've figured out that he's got his pacifier, hasn't
pooped, and hasn't wedged his limbs into the crib, there's really
nothing to do but wait him out. He usually goes back to sleep in 30-60
minutes. But the disruption is often enough so that I don't feel quite
right the next day, even if the total number of hours of sleep I get is
adequate. The urge to scream SHUT UP! at the top of my lungs (and I have
a loud voice that's been trained for theater) is sometimes hard to
resist, but I always manage.

Things seem quiet now. I'll see if I can get back to sleep. Maybe if I
just think of this sort of thing as routine it won't trigger such a
reaction in me.

Wednesday, April 8, 2009

Grateful and a little depressed

We just received yet another developmental assessment. We've read quite a few in the past year, written by Quinn's many village members. This most recent one is by the wonderful folks at Quinn's amazing new super-intensive early intervention program. This is a pretty thorough report, discussing each area of Quinn's development. And these folks know what they are talking about because they spend hours with Quinn each day. 

Reading about what these folks are working on with Quinn, and how they are doing it (with a combination of TEACHH, PECS, ABA, and Floortime!) gives me an extraordinary appreciation for their work. I've observed Quinn in the classroom there, and the patience, knowledge, commitment, and professionalism these folks exhibit is stunning. So that's what I'm grateful for.

Now for the depressing part. Quinn is really delayed. Assessments are an imperfect measure, and they all differ, and the instruments don't capture all the strengths, and the reliability and validity may be questionable and who cares anyway about the numbers, and yada yada yada. But it's just a downer to read that your 30-month-old has the cognitive development of an 8-month-old.  And even the areas of relative strengths show a 50% delay, so around 15-16-month level. Just not that fun to read, really. None of this is a shock, but well, it always is, a little bit, to see it in black and white, after all the work, all the "more" games and putting blocks away one-at-a-time.

And even though I am blown away with the patience of the folks working with Quinn, that also makes me a bit sad. Because frankly, I just don't have the patience to to exchange a PECS card for a Pepperidge Farm goldfish 30 times at every snack, like they do at his program. (Quinn eats a lot of goldfish - yum!) Even if I were not working, I probably wouldn't do it, which makes me feel a little guilty and inadequate...and grateful that Quinn has people in his life who will do that every day for a few hours.

From the NFXF - Action Alert: The Achieving a Better Life Experience Act

Advocacy Action Alert-ABLE ACT-Make Calls and Send Emails Today
April 9, 2009
TO: All NFXF Friends and Advocates 
FROM:  Your NFXF Washington Team
Dear National Fragile X Foundation Advocates,
The Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205) was introduced last week in both the Senate and House.  The ABLE Act will give individuals with disabilities and their families the ability to save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities.  
The ABLE Act will allow individuals with disabilities to create a disability savings accounts or 'ABLE Accounts' that would accrue interest tax-free.  The account could fund a variety of essential expenses for the individual, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.  The legislation prohibits amounts held by, or paid or distributed from any ABLE accounts from being treated as income or assets when determining eligibility for benefits provide by any Federal benefits program.
Asset development is one step toward improving economic self-sufficiency, and the legislation's focus on encouraging asset development will greatly incentivize people with disabilities to live more productive lives through earning and saving resources for their future.
1) If your Representative and/or Senators have not already cosponsored 
S. 493/H.R. 1205, (see list of current co-sponsors at right) please CALL and/orEMAIL them and ask them to cosponsor this important legislation.
[The CALL link above will open a window for you to enter your zip and be directed to your Member's web page with phone number. The EMAIL link above will direct you to a preselected letter you can customize and email]
If you choose to call (this will have the greatest impact) we've prepared a simple SCRIPT that you can follow.  
2)  If your Member of Congress or Senator has already cosponsored S. 493/H.R.1205, (see list to right) please send them a brief email or letter thanking them for their support of this important legislation. 
[All you need to do is click on the THANK YOU link above and enter your zip code and the system will select the correct letter-the please cosponsor or the thank you letter]

Forward this to friends and family-everyone can participate.
Your NFXF Washington Team
House Cosponsors
Rep Crenshaw,FL-4 
Rep Akin, [MO-2]
Rep Andrews, NJ-1
Rep Bachus, AL-6 Rep Bean, IL-8
Rep Berkley, NV-1
Rep Blackburn, TN-7
Rep Blunt, MO-7
Rep Boozman, AR-3
Rep Bordallo, GU
Rep Brady, TX-8
Rep Brown, FL-3
Rep Brown Waite, FL-5
Rep Burton, IN-5
Rep Campbell,CA-48
Rep Cantor, VA-7
Rep Carson, IN-7
Rep Cohen, TN-9
Rep Davis, KY-4
Rep Diaz-Balart FL-21
Rep Dreier, CA-26
Rep Ehlers, MI-3
Rep Filner, CA-51
Rep Frank, MA-4
Rep Gordon, TN-6
Rep Graves, MO-6
Rep Hare, IL-17
Rep Harper, MS-3
Rep Heller, NV-2
Rep Holden, PA-17
Rep Holt, NJ-12
Rep Kennedy, RI-1
Rep King, NY-3
Rep Kirk, IL-10
Rep Mack, FL-14
Rep Marshall, GA-8
Rep McMorris WA-5
Rep Meek, FL-17
Rep Mica, FL-7
Rep Moore, KS-3
Rep Moran, VA-8
Rep Neugebauer, TX-19
Rep Norton, DC
Rep Nunes, CA-21
Rep Olson, TX-22
Rep Paul, TX-14
Rep Paulsen, MN-3
Rep Pence, IN-6
Rep Platts, PA-19
Rep Roe, TN-1
Rep Rooney, FL-16
Rep Ros-Lehtinen, FL-18
Rep Roskam, IL-6
Rep Rothman, NJ-9
Rep Ryan, OH-17
Rep Schmidt, OH-2
Rep Sessions TX-32
Rep Smith, NJ-4
Rep TauscherCA-10
Rep Thompson,CA-1
Rep Wolf, VA-10
Rep Young, FL-10

Senate  Cosponsors
Sen Casey,  [PA] Sen Brownback, [KS]
Sen Burr,  [NC]  Sen Dodd, [CT]
Sen Hatch, [UT] 
Sen Kennedy MA Sen Specter PA 
Sen Wicker, MS