Wednesday, September 24, 2008

Seasonal Sensory Shenanigans..

While Potatey does not have Sensory Processing Disorder in the sense that his sensory issues are debilitating and are interfering with his daily functioning, he DOES have sensory issues.

And every spring and fall, he and I go through the same thing. Every spring it's a battle to get him to switch from long pants, socks and long sleeved shirts/sweaters to shorts, T-shirts and sandals. And every fall is a battle to get him to switch from shorts and T-shirts and sandals, to long pants, socks and long sleeved shirts/sweaters. And for about 3 to 4 weeks, he will fight me with all he's got to NOT make the clothing transition (and then after that period, his sensory systems have become desensitized to the clothing changes and it's smooth sailing again).

While all of this may appear as a battle of wills, I know it is not (going through this in much more extreme fashion with Salamander has taught me that much). It truly is that his system needs to get "reprogrammed" to the tactile sensations of additional clothing or lack of additional clothing on his skin.

I started the transition in to fall clothes this week, as it is rapidly getting *nippier* here. So far, we've had lots of tears and tantrums in the morning (as opposed to his usual "running to his clothing drawers, picking something out and throwing the clothes on" deal). I know it'll be like that for another 2 -3 weeks or so, and then we'll be OK again.

[hmm, as this is happening every spring and fall, I am wondering if there is an allergy and/or Vit D deficiency component to this..]

This morning was a particularly exhausting battle (as he needed to wear BOTH long pants and a sweater; so a double sensory whammy) and yes, I admit it, I DID get frustrated. Especially as this is not the only battle I am fighting at the moment (see my post from last nite).

Two big things I am tackling today: I am taking Salamander to a Lindamood-Bell learning center tomorrow for additional educational diagnostic testing. He's in 5th grade now, but his basic spelling and math skills are no where near grade level (school doesn't quite see it that way..). And despite all the instruction he's had over the past 3 years in the Pragmatic Learning Center (so smaller group setting, lower pace), the skills are NOT coming on line and the gaps are getting larger. And he's getting very frustrated. So I need to figure out where the issues are (as obviously the current method of teaching him spelling and math facts are NOT doing the job - the information may stick for a day, and then "poof" it's gone again. Of course ifts easy to say that that is because of Salamander's ADHD (aka if only he "paid attention.."). My stance is; "No, we are asking Salamander's neurological wiring to do learn in a way that it cannot learn effectively, we need to find a method that DOES work with his wiring, so he CAN learn these things." Case in point - I KNOW he can learn, I know he can remember facts. I know he can RETRIEVE facts from his memory. Yesterday, he could tell me all about the wind speeds of the various storm categories, from Tropical Depression up to Stage 5 Hurricane. But the same kiddo cannot tell me what 12 - 8 is without getting utterly distressed as he doesn't have 12 fingers to be able to figure this out. So we need to find other props and then very laboriously, he can figure out basic math operations.. And that is just not how it should be.. NOT in 5th grade... Not when you are doing multiple digit additions/subtractions, multiple digit multiplications/divisions, and now exponents. You NEED your basic math facts to do these types of things (and no, giving him a calculator is not a solution. The output of a calculator is only as good as the input, and if you have no "numbers sense", how do you know what the calculator spits back at you "makes sense"?). So I just wrote a letter to school notifying them of the fact that I am going to do this educational diagnostic testing, and that my goal is to have the results available for discussion at Salamander's upcoming annual IEP review meeting.

The other big thing I need to tackle today is the events that took place yesterday in the Pragmatic Learning Center. While I completely understand that kids with challenges like Salamander melt down and that the melt downs can be intense and difficult to redirect (heck, I've lived THAT life for many years now), what happened (and I can't go into the details here) terrified Salamander. And I need to make sure he is safe and feels safe (as he cannot learn if he does NOT feel safe. Fright/flight will kick in and then HE will become the one having the meltdowns).

And then of course there's the usual paying work, grocery shopping, cooking, laundry and other house stuff that needs to get done.

So on that note, time for me to go compose a letter regarding the Pragmatic Learning Center issues.

Oh, I am going to try like heck to listen to AutismOne Radio's broadcast of the meeting called by Rep. Maloney to discuss vaccine-autism concerns. The broadcast starts at 1.50 pm EST. I HAVE heard that the broadcast will be archived for later access...


At 10:30 AM, September 24, 2008 , Blogger Petra said...

I am adding some info on the Maloney briefing as a comment. Look at the incredible list of attendees - and the only reason that these folks are attending is because a very dedicated group of moms and dads burned up the wires, kicked these folks' butt and reminded them on how exactly votes them into office.

The following provides a running tally of the Senators and Representatives who have RSVP'd in some fashion for Representative Carolyn Maloney's (D-NY) vaccine-autism meeting on Wednesday, September 24th at 2:00pm. Click HERE for details. Are your government officials on the list yet? We've learned that you need to ask for the email address of the "Scheduler" for your Congressperson. Send that person an email.



Rep. Carolyn Maloney (D-NY)*
Rep. Chris Smith (R-NJ) Autism Caucus Co-Chair ("He read EOH cover to cover")*
Rep. Hank Johnson (D-GA)
Rep. Dan Burton (R-IN)*
Rep. Tom Price (R-GA)
Rep. Christopher Carney (D-PA) (Will attend in person)*
Rep. Carney's Health Care Legislative Aide
Rep. Kirsten Gillibrand (D-NY)
Rep. Paul Brown (D-GA) (Will try to attend in person)
Rep. Michael McNulty (D-NY) ("Likely)*
Rep. Gary Ackerman (D-NY)*
Rep. Marsha Blackburn (R-TN)
Rep. Lincoln Davis (D-TN)*
Rep. Neil Abercrombie (D-HI)*
Rep. Steven LaTourette (R-OH)
Rep. Charlie Wilson (D-OH)*
Rep. Eliot Engel (D-NY) – (Will attend in person)*
Rep. Xavier Becerra (D-CA)*
Rep. Earl Blumenauer (D-OR)*
Rep. Michael Capuano (D-MA)*
Rep. Andre Carson (D-IN)*
Rep. John Duncan (R-TN) – (Will try to attend in person)*
Rep. Jim Langevin (D-RI)*
Rep. Robert Brady (D-PA)*
Rep. Gabrielle Giffords (D-AZ)*
Rep. Phil Gingrey (R-GA)*
Rep. Gene Green (D-TX)*
Rep. Marcy Kaptur (D-OH)*
Rep. Patrick Kennedy (D-RI)*
Rep. Susan Davis (D-CA)*
Rep. Ron Kind (D-WI)*
Rep. John Kline (R-MN) – ("They really want to be a part of this.")*
Rep. Mark Steven Kirk (R-IL)*
Rep. Raul Grijalva – (D-AZ)
Rep. Jim Langevin (D-RI)*
Rep. Sander Levin (D-MI)*
Rep. Mike Michaud (D-ME)*
Rep. Frank LoBiondo (R-NJ)
Rep. Phil English (R-PA)*
Rep. Anna Eshoo (D-CA) (Most likely)*
Rep. Vito Fossella (R-NY) (Either in person or will send staff)*
Rep. Barney Frank (D-MA) – (Very likely)*
Rep. Thaddeus McCotter (D-MI)*
Rep. Jim McGovern (D-MA)*
Rep. Steven Lynch (D-MA)*
Rep. Louie Gohmert (D-TX)
Rep. Ed Whitfield (R-KY) ("Will try")
Rep. Jim Matheson (D-UT)*
Rep. Doris Matsui (D-CA) (In person or a staffer will be there)*
Rep. Carolyn McCarthy (D-NY)*
Rep. John McHugh (R-CA)*
Rep. Buck McKeon (R-CA)*
Rep. Gregory Meeks (D-NY) ("Will make every attempt possible")*
Rep. Brad Miller (D-NC)*
Rep. Jo Bonner (R-AL)
Rep. Gresham Barrett (R-SC)
Rep. Duncan Hunter (R-CA)
Rep. Rush Holt (NJ) ("Will try to attend in person, or else send staff rep")*
Rep. Virgil Goode (R-VA)*
Rep. John Barrow (D-GA) ("Will attend in person, pending events that day")
Rep. Patrick Kennedy (D-MA) ("Will try to send someone")*
Rep. Marilyn Musgrave (R-CO) ("Staffer will most likely attend")*
Rep. Tammy Baldwin (D-WI)*
Rep Van Hollen (D-MD)
Rep.Jim Moran (D-VA) ("We are ALL very interested in this issue.")*
Rep. Chip Pickering (R-MS) ("Congressman Pickering is passionate about this issue.")*
Rep. Frank Pallone (D-NJ) ("Staffer will most likely be there.")*
Rep. Bill Pascrell (D-NJ) ("Staffer will probably be present.")*
Rep. Collin Peterson (D-MN)*
Rep. John Peterson (R-PA)*
Rep. Todd Platts (R-PA)*
Rep. John P. Murtha (D-PA)*
Rep. David Price (D-NC)*
Rep. Adam Putnam (R-FL)*
Rep. Rodney Alexander (R-LA)
Rep. Nita Lowey (D-NY)*
Rep. Linda Sanchez (D-CA) – "Staffer will probably be present"*
Rep. Grace Napolitano (D-CA)*
Rep. Mike Rogers (R-MI)*
Rep. Adam Schiff (D-CA) ("Will do their best to get a staffer there")*
Rep. Pete Sessions (R-TX)*
Rep. Joe Sestak (D-PA) ("Will try their best to have someone there")*
Rep. Tom Bishop (D-NY) ("It's on his schedule")
Rep. Nick Rahall (D-WV)*
Rep. Bart Stupak (D-MI)*
Rep. Bennie Thompson (D-MS)*
Rep. Pat Tiberi (R-OH) ("Will do their best")*
Rep. Fred Upton (R-MI) ("Will do their best")*
Rep. Zach Wamp (R-TN) ("Will be there in person along with his health staffer")*
Rep. Bob Latta (R-OH) ("Will try to attend")
Rep. Anthony Weiner (D-NY)*
Rep. Dave Weldon (R-FL) ("Will try to be there in person, if not a staffer go")*
Rep. David Wu (D-OR)*
Rep. Patrick McHenry (R-NC)
Rep. Virginia Brown-Waite (R-FL)
Rep. Niki Tsongas (D-MA)
Rep. Joe Wilson (R-SC) ("Will attend in person or send a staff person")*
Rep. Earl Pomeroy (D-ND)*
Rep. Patrick Tiberi (R-OH)
Rep. Mark Udall (D-CO)


Sen. Evan Bayh (D-IN) ("Likely")
Sen. John Isakson (R-GA)*
Sen. Thad Cochrane (R-MS) ("Will try")
Sen. Sherrod Brown (D-OH)*
Sen. Maria Cantwell (D-WA)*
Sen. Bob Corker (R-TN)
Sen. Lamar Alexander (R-TN)
Sen. Robert Casey (D-PA)
Sen. Jeff Sessions (R-AL)
Sen. Hillary Clinton (D-NY) ("Will try to send someone")*
Sen. Patty Murray (D-WA)
Sen. Saxby Chambliss (R-GA)
Sen. Frank Lautenberg (D-NJ)
Sen. Kent Conrad – (D-ND)
Sen. Jack Reed – (D-RI)
Sen. Sheldon Whitehouse (D-RI)
Sen. Byron Dorgan (D-ND)
Sen. Norm Coleman (R-MN)
Sen. John McCain (R-AZ) ("Health staffer will try")
Sen. Lindsay Graham (R-SC)
Sen. Tim Johnson (D-SD)
Sen. John Thune (R-SD) ("Staffer will try to attend")
Sen. Chuck Schumer (D-NY)*
Sen. Barbara Mikulski (D-MD) ("Will try to have health staffer attend")*
Sen. Mary Landrieu (D-LA)
Sen Mitch McConnell (R-KY)
Sen. Lisa Murkowski (R-AK)
Sen. Richard Burr (R-NC)
Sen. George Voinovich (R-OH) ("Will try to attend in person, if not will send staff")
Sen. John Kerry (D-MA)
Sen. Kay Bailey Hutchinson (R-TX) ("Really wants to attend, but sending 2 staffers")
Sen. Claire McCaskill (D-MO)
Sen. Ken Salazar (D-CO)

HOUSE: 100

DEM: 80
GOP: 53

* Denotes a member of the 2007– 2008 Coalition for Autism Research and Education (Autism Caucus) of the 110th Congress.


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