Merry Neuro Compromised Christmas

Even though our extended family understands that Little Man has FASD they still just do not get what that means some times.  Holidays are almost always one of them.  Some things that children (and adults) look forward to with pleasure all year are absolute torture for a child who has neurological differences effecting his sensory processing and emotional regulation.  So there are things we just don’t do – no matter how much begging we get from the family and no matter how mean they think we are over it.  For example we will not be:

Riding the polar express – For neuro typical children it’s a magical one hour train ride where they read the story book aloud, serve hot cocoa, and get to meet Santa.  For our son its 60 minutes of not being able to sort out the story from all the other noises, too many people he doesn’t know all crowded too close to him, a treat everyone else can have but him (allergy to chocolate), and way too long a time spent in a line for way too short a time spent with “The MAN”.  Then inevitable scene as we drag him away from Santa so someone else can have their turn.  No thanks – we will stay home and watch the movie together eating hot air popped popcorn with plenty of real melted butter ( a treat he can have).

Doing “Elf on the Shelf” – most kids are mature enough by 6 years old to control their impulse to scale the side of the refrigerator to get to the “elf”.  My son?   Not yet.  Not to mention the fact that he thinks they are scary looking. 

Caroling – it takes little man a very long time to learn the words to a song due to his slower than average auditory processing.  He can and once he has memorized one he never forgets it.  But getting him to sing them in front of people is very hard if not impossible – even people he knows well.  So a command performance is just not gonna happen.  We do sing together  - but usually in the car.  Since no one is looking at him there he is happy singing along with his favorite CD of Christmas songs.  And we go see the Nutcracker.  He is enthralled and soothed by classical music and as long as we sit in the back we can slip out without disturbing others if for some reason he cannot make it through the whole performance.

Midnight Mass – Messing with the schedule is always a major no no.  With all the other unusual stuff going on (no school, Christmas tree and lights at the house, people stopping by) there is no way I’m keeping him up 4 hours after his usual bed time.  The church we attend has a 5 PM service.  We will be going to that.  Little man is even going to be in the nativity play.  I figure there was probably at least one shepherd at the real event that looked sort of confused and out of it so he’ll be authentic. 

Displaying wrapped gifts from the family under the tree before Christmas morning –  I’m sorry, I think that is mean for all children.  For mine it is a temptation that is totally beyond his ability to resist.  Wrapped gifts stay tucked away until after he is a sleep Christmas eve.

Big Family Christmas parties – these are way to over stimulating for Little Man.  We go when we cannot avoid it but I would so prefer not to.  There is always food he cannot have and that we have to watch to  be sure he doesn’t get into, too much noise, and too many people.  He doesn’t enjoy them and usually ends up hiding in a corner or under a table.  And gift time almost always ends in some kind of tantrum – large or small, because he wants what someone else has.  I like it when we can manage smaller groups best.  Little Man can actually enjoy those.

I’m sure that other families have other cherished traditions that we could not participate in but these are the ones that seem to irk mine the most.  Christmas is supposed to be magical and fun for kids.  There are certain things I just have to do differently to make sure it is for mine.

Legal Eagle***

Since I’ve been pushing folks to write their senators in support of s2262 legislation Advancing FASD Research, Prevention, and Services Act here, on Facebook, and in person pretty hard I thought it might be interesting for folks to know the status of legislation regarding FASD in general.  I make it a habit to keep up with the Substance Abuse and Mental Health Services Administration (SAMHSA) Fetal Alcohol Spectrum Disorders (FASD) Center for Excellence’s (the Center)  Fetal Alcohol Spectrum Disorders Legislation Report which comes out biannually.  The latest issue of the report was published in October 2012 so the results are quite current.

I find it a bit peculiar that the report looks at legislative activity at the state level but not the federal.  I also thing that the report tends toward an overly optimistic tone, in part because of how it divides the statistics.  The current issue covers legislation introduced between 2003 and April 30, 2012, as well as any status changes as of October 22, 2012.  During that time frame there have been 290 bills (or resolutions, memorial motions, or other pieces of legislation) either entirely or partially related to FASD, identified across 45 States and the District of Columbia.  Of the 290 identified 87 or 30% have been passed / adopted.  The Report is very upbeat about the 30% “pass rate” vs. an average 4% pass rate for bills introduced overall.  This is a bit of an overly rosy interpretation in my opinion.    The 4% rate is determined by looking at all bills (not resolutions, memorial motions etc.) introduced and passed per year.  Not only is the population they are using different the time frame, 9 years’ worth of passes vs one prevents a real apples to apples comparison.

The report also segments the data by “categories” that the legislation addresses like Prevention, Treatment, Funding and Criminalization.* They report the prevalence of legislation as follows:

Prevention                                             43%

Funding                                                 24%

Criminalization                                    13%

Treatment                                             12%

But the categorization method is misleading.  Treatment in this structure covers both treatment of individuals affected by FASD and treatment of alcohol addictions aimed at preventing FASD.  Also funding in much of the legislation is directed by the legislation at a specific target – Prevention, Awareness, or Treatment.    If you look at the details of the items in the Funding and Treatment categories in that light you end up with a very different picture of the legislative makeup:

Prevention **                       72%

Criminalization                    14%       

Treatment of FASD            7%

Also, looking at the pass fail rate of the categories is instructive:

Prevention**                        65% pass rate

Criminalization                    29% pass rate

Treatment of FASD            7% pass rate

If you strip out non-binding resolutions and memorandums passage of legislation aimed at improving the lives of individuals with FASD is WORSE than the 4% average.  So, I’m pushing a bill I think makes a difference.  Is it perfect?  No but what in this world is.  It contains elements of prevention and awareness which are important.  It advances research to better understand FASD.  It also addresses diagnosis and treatment of individuals already suffering.  If you are reading here and you haven’t yet taken action to encourage your senators to advance S2262 please do.  It’s not hard.

*Criminalization is the introduction of criminal penalties against women who have alcohol exposed pregnancies. 

** Prevention including treatment of alcoholism aimed at preventing FASD births.

*** 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.

A Small Request

Please consider sending the following letter to both your state senators and the chairman of the Senate Committee on Health, Education, Labor, and Pensions.  You can find the contact info for your senators here

http://www.senate.gov/general/contact_information/senators_cfm.cfm

A list of the committee members and the contact info for the chairman are at the end of this post.

Date:

Dear Senator ________________________________

As a parent/grandparent/relative/foster parent/ caregiver/ friend of a child with Fetal Alcohol Spectrum Disorder (FASD), I was so pleased to learn about the bill S2262: Advancing FASD Research, Prevention, and Services Act introduced 03/29/2012 by Senator Tim Johnson.  The bill, aimed at amending the Public Health Service Act to revise and extend the Fetal Alcohol Spectrum Disorders programs is sorely needed.  The bill was referred to the Committee on Health, Education, Labor, and Pensions the same day and has had no further action since.   Although FASD has been recognized as the “number one cause of preventable birth defects,” for well over 20 years it is much more than that. Our elected officials not only need to understand how to improve the Federal Government’s public health response aimed at prevention, but also how to improve its response as it relates to the education, housing, employment, public safety, criminal justice, and financial issues facing persons with FASD and their families. There are so many more things we can and should do to help our children and their families.  Things that will in the end help our entire society.

A great number of children and adults with FASD have significant behavioral, communication, and social impairments that preclude them from effectively participating in school or work and general social activities. FASD affects their ability to concentrate, focus, and perform many activities of daily living which neuro-typical people take for granted.  The families and caregivers of people with FASD are often overwhelmed with the financial implications of having both, more expenses for treatments and less time to work. They are provided little guidance, and there is a lack of “best practices” on how to help individuals with FASD become functioning members of society.  Parents (and FASD affected individuals’) dreams of college, grandchildren (a spouse / children), and retirement (career) are pushed aside to focus on mastering a variety of daily concerns like impulse control, understanding the abstract concepts of money or time, and social skills.   43% of individuals affected by FASD will not finish school.  About 50% of them will think about or try to commit suicide.  70% will be institutionalized in their life for alcohol and drug problems, mental health reasons, or crimes committed due to their impulsivity and vulnerability.  80% will not be able keep a job increasing their risk for homelessness, depression, substance abuse, etc. It becomes a vicious circle and it doesn’t have to be that way.  With the right interventions and support most people with FASD can learn and they can be gainfully employed.  They have so much that they can give to our society.

How can the Senate address these issues more effectively, so that we can achieve a quantifiable difference in the lives of so many? Clearly, we need action on S2262.  Introduction of the bill was an important first step in working to ensure the human rights that children and adults with FASD deserve but now we must move forward with it. I am looking forward to seeing more attention and action on S2262  by the Committee on Health, Education, Labor, and Pensions  and the senate as a whole in the coming year.

Thank you very much for your time and consideration.

Sincerely,

Name

Address

Committee on Health, Education, Labor, and Pensions Members

Harkin, Tom (IA) , Chairman            

731 HART SENATE OFFICE BUILDING WASHINGTON DC 20510

(202) 224-3254

Web Form: www.harkin.senate.gov/contact.cfm

Members:	Members:
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)

Exercise and FASD

I recently read a review of  SPARK: THE REVOLUTIONARY NEW SCIENCE OF EXERCISE AND THE BRAIN by John J. Ratey.  In the review written by Rich Haglund I was caught by this particular paragraph:

Participation in … physical activity before school started led to significant academic achievement. On the Trends in International Mathematics and Science Study (TIMSS), Naperville students finished first in the world in science and sixth in math, behind Singapore, Korea, Taiwan, Hong Kong and Japan. Because Naperville is a “demographically advantaged school district,” Ratey looked at poorer communities where Naperville-style PE programs were applied. In Titusville, Pennsylvania, similar results occurred. Since implementing the program, scores in Titusville went from below the state average to 17 percent above the state average in reading, and to 18 percent above in math.  

I was hooked and went looking for more information.  I hoped to see if there was any cause to think that this general result would prove applicable specifically to children with FASD.  In the words of John Ratey himself I found this:

“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.”

Yowza – sounds tailor made for the FASD brain doesn’t it.  Anytime something sounds too good to be true I like to dig further to see who the source is and if there is more than just their voice.  John Ratey is an associate clinical professor of psychiatry at Harvard Medical School so I am pretty comfortable there.  I also found information on research by Dr. Brian Christie, a neuroscientist at the University of Victoria into the Exercise / FASD link.

Dr.Brian Christie  (link to the article) and Dr. Chris Bertram are hoping to prove that exercise and use of motor skills strengths can positively change the FASD brain specifically.  They have already completed animal studies on this connection and currently have a study of the impact on human subjects going on right now.

In the documentation for their animal studies they note that exercise has been used to improve the brain in other brain disorders and to help those with traumatic brain injuries for years, with much success. So logically it should follow that the same could work for FASD. You can find more info on their current study here .  They are using cardio bikes connected with video games to hold the childrens' interest in exercise for the required length of time. 

In their animal models of FASD, the scientists behind this study have been able to significantly reduce neurocognitive deficits by having animals engage in regular cardiovascular exercise. The results are dramatic, and are coupled to an increase in BDNF (brain-derived neurotrophic factor). In the present study they hope to take the first steps to translate this work into the human realm.  I only wish I lived close enough for Little Man to participate – from the video they have posted of the game element he would love it and even if it doesn’t yield the same spectacular results in humans that it does in mice *** it couldn’t hurt.

Unfortunately we don’t live anywhere near there, so what can I - as parent - take from the research that is being conducted into exercise, motor skills, and the brain?  Well there are a few things I can do right now:

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.

3.  Pick up and read a copy of Spark to see if I find more ideas!

*** Unfortunately, it is not expected to be AS successful in humans since our brain structures and function are so much more complex but it is still expected to yield positive results.  I can’t wait to see the outcome.

Everything does not have to be a fight

I was reading comments on this article about Autism and people were getting into a tizzy regarding comments about the misdiagnosis of children with FASD as autistic.   

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.