Thursday, December 20, 2012
Thursday, December 13, 2012
*** The education I'm getting from trying to effecively advocate for my son is amazing. Neurobiology, Law, Public Policy, Education Theory, man you name it.
Tuesday, December 11, 2012
731 HART SENATE OFFICE BUILDING WASHINGTON DC 20510
Web Form: www.harkin.senate.gov/contact.cfm
Mikulski, Barbara A. (MD)
Bingaman, Jeff (NM)
Murray, Patty (WA)
Sanders, Bernard (VT)
Casey, Robert P. (PA)
Hagan, Kay R. (NC)
Merkley, Jeff (OR)
Franken, Al (MN)
Bennet, Michael F. (CO)
Whitehouse, Sheldon (RI)
Blumenthal, Richard (CT)
Enzi, Michael B. (WY), Ranking Member
Alexander, Lamar (TN)
Burr, Richard (NC)
Isakson, Johnny (GA)
Paul, Rand (KY)
Hatch, Orrin G. (UT)
McCain, John (AZ)
Roberts, Pat (KS)
Murkowski, Lisa (AK)
Kirk, Mark (IL)
Friday, December 7, 2012
“Exercise turns on the attention system, the so called executive functions-sequencing, working memory, prioritizing, inhibiting and sustaining attention…. On a practical level it causes kids to be less impulsive which makes them more primed to learn.”
1. Make sure Little Man is getting enough exercise, at minimum one hour a day. 90 minutes is actually the amount recommended by doctors for ALL children so that may be an even better goal for our children effected with FASD. (I’m betting this won’t be a problem for those whose children also have ADHD)
2. Build on Little Man’s strengths. Allow him to do physical activities he is good at instead of insisting on practice of skills he doesn’t have. Little Man LOVES to run. His ball skills for kicking, throwing, catching, bouncing etc. are not so good. I know at school they make him work on dribbling, hand and foot, and playing catch. Great, good – for skill development but for just getting the heart going and neurons growing – hell let him RUN.
Tuesday, December 4, 2012
I really don't understand why. Autism Spectrum Disorder (ASD) and Fetal Alcohol Spectrum Disorder (FASD) are similar in several symptoms and may be mistaken for one another. They are not, however, the same. In general, it is more socially acceptable to diagnose ASD than FASD because there is no definitive known cause for ASD and therefore doctors can avoid the blame / shame problem associated with FASD. The problem with this is that while some treatment protocols / therapies for ASD are helpful to children with FASD, many are not. So misdiagnosing leads to less than optimal treatment of children who have FASD and inclusion of FASD children in studies of treatments to help ASD cloud the results. We need to remove the stigma from FASD so that children with each disorder may be properly diagnosed and treated in ways that maximize their potential.
The comment that some children diagnosed with ASD really have FASD (or perhaps have BOTH) is not aimed at dismissing the seriousness of ASD in our country today. Nor does it deny the importance of ASD research and treatment.
The same problems happens with ADHD (attention deficit hyperactivity disorder), ODD (oppositional defiant disorder), SPD (sensory processing disorder) and a whole host of others. Children with FASD may exhibit symptoms that look like any one of these. Again - that does not dismiss those disorders nor minimize their prevelance. But misdiagnosing children with any of these leads to less than optimal help for the children and contaminates study results on the effectiveness for treatments for the disorder while preventing an opportunity for study of effective treatment for FASD.
Unless I am missing something the only controversy here is people getting offended that you might be saying their child's problems were caused by their behavior. Um - doesn't that kind of prove my point? Until we remove the blame and stigma from an FASD diagnosis people are going to try and avoid that "label" and slap on a more socially acceptable, but incorrect, one.
Monday, November 26, 2012
Wednesday, November 21, 2012
I bet you think I am over thinking this. In some cases I may be. For example - I have listed Bed Time is 8 PM. Will it kill anyone if I didn't list that or if the kids are up later? No, but it will make for disrupted schedule which leads to bad days at school and weeks of getting back on track. However, we'd all survive.
Some things, like what meds to give and when (especially with Little Man's chronic infection and his constipation problems even one missed dose is a big issue) and where the nebulizer is stored if our daughter has an asthma attack (rare these days but possible) are actually important. You'd think my husband would know these things but you'd be wrong.
Other things are really for their benefit:
Do homework first before the ADHD meds wear off. (If they wait its gonna be a long miserable night!!)
Two stories, 10 minutes rocking, and the weighted blanket with Little Man will save them a lot of sleep.
And some are clearly for my benefit:
Remember I am three hours behind you - if you call before 8 AM your time someone better be dying.
If someone is dying, or bleeding, or unconscious, or if you locked yourself out, or the car won't start, or you can't find something - call someone closer before you call me! What am I going to do about it from here anyway?
And most important - if you even THINK one of the kids might need to go to the emergency room - TAKE THEM to the emergency room and don't call me until you are on the way.
And yes, I know from experience I DO need to include those last three.
Tuesday, November 20, 2012
So mama had about 3 hours of sleep last night and spent most of today chasing around at follow up appointments, getting multiple scripts filled - looking for specialty glasses that allow him to see but do not put any pressure on the bridge of his nose where the infection always seems to start from, etc.
If its not one thing its another.
Wednesday, November 7, 2012
Friday, November 2, 2012
Diane is the executive director of FASCETS, a private, non-profit 501(c)3 organization dedicated to prevention of FASD and to preventing secondary defensive behaviors and improving outcomes for people who have FASD (by increasing understanding of FASD as a brain-based physical disability). She was recognized by NOFAS in August of 2012 for her outstanding contributions to the efforts to combat FASD.
Tuesday, October 30, 2012
Monday, October 29, 2012
In times of absolute desperation - cosleeping. We don't get much sleep if we allow little man in bed with us. Its kind of like trying to sleep inside a cememt mixer. But his bed has a trundle and I will at times sleep there with him if it i s the only way to get any sleep. there is no research or recommendations I found for this - its my own last ditch idea before we found the things above.
Thursday, October 25, 2012
I am working on a couple of things for this blog though and will try to get the energy together to start getting them up here. One is a post on sleep issues and what things we have found to be helpful with Little Man. for another - I have been rereading Diane Mablin's book Trying Differently Rather than Harder.
I really like the book. I find it useful in a number of ways and wanted to write sort of a combination of book review with the spin off thoughts her work has inspired in me. One piece of advice I can give easily is if you do not have a copy of the book get one and read it. If you already have - reread it fairly regularly. I am always surprised at how I can find something new or often I really need just a reminder of certain things.
Oh yeah, one final thing before I collapse back into a sniffling hacking heap - the schools assessments came back and they have decided to classify Little Man as "Other Health Impaired" and "Speech and Language Delayed". I think of the 14 categories they have to chose from that is probably the best fit they could find. He remains qualified for special education services for the next three years based on this. I am, as usual following one of these meetings, happy and sad. Sad because it is necessary. I am so deeply sorrowful that there is no "cure" for him that will make the extra support un-needed some day. It can be an endless sticky pit if I let myself dwell there so I don't dwell. No amount of positive thinking completely erases all shadows of that grief though.
Of course, I am also very glad that there is official documentation of the support he needs. I don't kid myself that just having that will ensure it is all be smooth sailing for the next three years. I believe (almost all) of his current team are really talented dedicated professionals that care about Little Man's success. I also believe that the criminal underfunding of our public education system means I will always have to push and insist and be that squeaky wheel so that he gets all that he needs - but having the paperwork in place to support that is one less hurdle. And given how little energy I have at the moment I am very grateful that it all happened smoothly and with no fight this time.
Monday, October 8, 2012
I think any surgery for a child, no matter how minimal, is emotionally fraught for the parents. I may be biased but I think with a special needs child there are – well - maybe not more worries but special worries. Because Little Man understands and operates younger than his 6 years it was very hard to explain to him what was going to happen. I know his ENT doesn’t see him enough to understand his limitations so it’s not all that surprising he was unprepared for how freaked out Little Man was by the anesthesia mask. I did warn the doctor that although Little Man listened calmly to his description and seemed unconcerned, that it was not going to go smoothly once we were in the operating room. I don’t think he fully believed (or maybe just did not fully appreciate the magnitude of) my warning until I was pinning my screaming, flailing son to the gurney while he and the nurse tried to still his thrashing head enough to get the mask in place. I cried the whole time I pressed his little body down and sang his favorite lullaby and eventually he succumbed. I then cried my way out to the waiting room.